An investigation on E-Health Records and Interoperability in China by PSSD by Federico

SCHOOL OF DESIGN MASTER DEGREE THESIS: Product Service System Design

WODEBÌNGLÌ An investigation on E-Health Records and Interoperability in China by PSSD SUPERVISORS: Prof. Daniela Sangiorgi Prof. Avril Accolla AUTHOR: Federico De Luca 894124 A.Y. 2019/2020

WODEBÌNGLÌ An investigation on E-Health Records and Interoperability in China by PSSD

ABSTRACT Nei prossimi decenni la Cina dovrà affrontare sfide sanitarie impegnative: la sua popolazione sta invecchiando rapidamente, l’urbanizzazione e i mutati stili di consumo hanno generato nuovi rischi sanitari, il degrado ambientale ha raggiunto livelli critici. Questi fattori contribuiscono ad alimentare una rapida crescita del tasso di malattie croniche come il diabete, le malattie cardiovascolari e il cancro. Anche gli oneri economici associati a questa transizione epidemiologica saranno estremamente elevati. Diverse misure possono migliorare la capacità della Cina di fronteggiare queste sfide sanitarie emergenti. Il sistema sanitario dovrebbe orientarsi verso la gestione delle malattie croniche a livello di intera popolazione. La nuova prospettiva richiederà un apparato sanitario pubblico affidabile che si impegni in attività di prevenzione, promozione della salute e interventi normativi a più ampio spettro. Il sistema di cure primarie necessita di una scala operativa adeguata al fine di fornire cure accessibili ed economicamente vantaggiose per i pazienti cronici. Infine, un’appropriata gestione farmacologica delle malattie croniche è essenziale per una garantire l’efficacia degli altri interventi e livelli di salute apprezzabili. Sebbene la Cina abbia deciso di concentrarsi sull’implementazione dei sistemi di Electronic Health Records (EHR) per migliorare l’efficienza del sistema sanitario e

concentrarsi sulla prevenzione rispetto alla cura, rimangono molte sfide da affrontare. Da un lato, il successo nel superare queste sfide può migliorare la qualità dell’assistenza sanitaria fornendo agli ospedali informazioni elettroniche sui pazienti e implementando il processo decisionale. Dall’altro lato, apre la porta a una più ampia gamma di miglioramenti in settori sanitari paralleli della ricerca e della prevenzione. Tuttavia, data la velocità della trasformazione digitale dei servizi in Cina rispetto al resto del mondo e l’attenzione all’innovazione del customer journey, l’implementazione dei sistemi EHR non ha seguito l’evoluzione di altri tipi di servizi. In dieci anni, l’applicazione è divenuta obsoleta, ha perso di vista l’utenza (paziente) e la mancanza di uniformità tecnica e legislativa ha reso inefficiente questo complesso sistema, in quanto non interoperabile. Un’assistenza sanitaria efficace ha bisogno del contributo della cooperazione tra tutti gli stakeholder, in particolare, sia dei fornitori di servizi sanitari che dei pazienti. L’evoluzione nell’organizzazione del sistema sanitario ha però ridotto al minimo il coinvolgimento dei pazienti. Pertanto, sono necessari strumenti e metodi innovativi per rendere parte attiva i pazienti nelle loro cure, come la promozione della loro consapevolezza in merito ai problemi di salute, l’educazione ad una corretta conoscenza dei problemi di

salute e il supporto di una comunicazione efficace tra pazienti e medici. In particolare, i pazienti devono avere accesso alle proprie informazioni cliniche personali sulla salute e diventare partner nell’incontro sanitario. L’accesso ai dati clinici è fondamentale per spostare il paradigma, attualmente centrato solo sugli ospedali, verso la collaborazione tra paziente e strutture sanitarie. Diversi studi sostengono che l’accesso dei pazienti alle loro cartelle cliniche migliora potenzialmente la comprensione della loro condizione. In questo modo, i pazienti diventano parte attiva nella loro cura; ciò migliora la gestione medica, l’efficienza della comunicazione tra il paziente e il personale medico, l’accuratezza delle diagnosi e aumenta la conformità alle linee guida cliniche per il mantenimento di una buona salute. I sistemi-servizio sono combinazioni di persone, tecnologie e altre risorse che interagiscono con altri sistemi per creare valore reciproco e per organizzare il dialogo tra diverse configurazioni. La progettazione del sistema-servizio di un’organizzazione richiede la modulazione sinergetica di interfacce, punti di contatto, processi, ruoli delle persone e tecnologia. Poiché l’innovazione tecnologica influisce in modo diverso sulle esperienze all’interno del servizio, i progettisti devono sfruttare la tecnologia e orchestrare sistemi complessi per realizzare servizi innovativi,

e consentire al contempo un’esperienza senza soluzione di continuità. La progettazione dei servizi si basa su contributi provenienti da una ramificazione di varie discipline, tra cui il management, la tecnologia dell’informazione e la progettazione delle interazioni. Questa tesi mira allo sviluppo di una piattaforma di sistema EHR per i pazienti in Cina che superi la centralità dell’ospedale nel sistema e la gestione discontinua e frammentata dei dati clinici. Attraverso una metodologia di progettazione Double Diamond, è stato possibile sviluppare, sotto la supervisione del personale medico e attraverso la prototipazione con gli utenti, un sistema-servizio integrato con i servizi di WeChat (Tencent), l’applicazione più popolare in Cina, per consentire agli utenti di ottenere la propria Cartella Clinica (PHR) e gli strumenti per comprendere il proprio quadro clinico. La complessità della ricerca ha richiesto lo studio di diverse aree e l’analisi di diversi casi studio in tutto il mondo. Questa analisi, combinata con le caratteristiche del contesto cinese, ha permesso lo sviluppo di un modello applicativo centrato sull’utente.

ABSTRACT China is facing severe health challenges in the coming decades; its population is rapidly aging, urbanization has led to unhealthy lifestyles, and environmental degradation and smoking rates are incredibly high. These factors fuel a rapid increase in the rate of chronic diseases such as diabetes, cardiovascular diseases, and cancer. The economic burdens associated with this epidemiological transition will also be extremely high. Several steps can improve China’s ability to deal with these emerging health challenges. The health system should turn towards dealing with chronic diseases on a population level. The new perspective will be a reliable public health apparatus that engages in preventive activities, health promotion, and better public policy and regulations. The primary care system needs big implementations, as it is capable of providing cost-effective and accessible care for chronic patients. Finally, the pharmacological management of chronic diseases is essential for good health. Although China has decided to focus on the implementation of Electronic Health Records (EHR) systems to improve the efficiency of the healthcare system and focus on prevention versus treatment, many challenges remain. On the one hand, achieving these challenges improves Healthcare’s distribution by providing hospitals with electronic patient information and implementing decision-making. On the other hand, it opens

the door to a broader range of improvements in parallel health care areas of research and prevention. However, given the speed of the digital transformation of services in China compared to the rest of the world and the focus on user journey innovation, the implementation of EHR systems has differed significantly from the strong trend shown on other types of services in China. In ten years, the application has been prolonged, has lost the focus on the user (patient), and the lack of technical and legislative uniformity has made this complex system inefficient, as it is not interoperable. Effective Healthcare needs contributions from both healthcare providers and patients. However, the healthcare process has minimized the patients’ engagement in China. Thus, there is a need for innovative tools and methods to engage patients in their care, such as promoting patient awareness about their health issues, educating them to have proper health knowledge, and supporting effective communication between patients and clinicians. In particular, patients must have access to their own personal clinical health information to be real partners in the healthcare encounter. Accessing clinician-generated data is critical to shift the provider- centered paradigm to one of patient-provider collaboration. Multiple studies support that patients’ access to their medical records potentially improves the understanding of their con-

dition. In this way, patients become active participants in their care; it enhances medical management, improves the efficiency of communication between the patient and medical staff, improves the accuracy of EHRs, and increases compliance with clinical guidelines for maintaining health. Service systems are combinations of people, technologies, and other resources that interact with other service systems to make mutual value and for these configurations to talk in an organized way, the design of the organizationâ&#x20AC;&#x2122;s service system requires the definition of a mixture of interfaces, tangible evidence, processes, people roles, and technology. Because technological innovation affects service experiences differently, service designers must leverage technology and orchestrate complex service systems to make innovative services while enabling a seamless experience. Service design relies on contributions from a ramification of fields, including management, information technology, and interaction design. This thesis aimed to develop an EHR system platform for patients in China that overcomes hospital centrality in the system and the data discontinuity and fragmentation management. Through a Double Diamond design methodology, it has been possible to develop, under the supervision of medical staff and prototyping with users, a service system integrated with WeChat services, the most used ap-

plication in China, to have their Patient Health Records (PHR) and tools to understand their clinical situation. The researchâ&#x20AC;&#x2122;s complexity required the study of different areas and the analysis of different case studies around the world. This analysis, combined with the characteristics of the Chinese context, allowed the development of a user-centered application model.

TABLE OF CONTENTS LITERATURE REVIEW 1. 1.1 1.1.1 1.2 1.2.1 1.3 1.3.1.1 1.3.2 1.3.2.1 1.3.3 1.4 1.4.1 1.5 1.5.1 1.5.2 1.5.3 1.5.4 1.6 1.7

The situation of the Healthcare System in China Unequal health resources on the territory Bridging the gap between urban and rural areas with the Medical Cloud Hospital triage and Primary Care Barriers to effective triage: the patientâ&#x20AC;&#x2122;s perception loop Medical drug prescription Contrast irrational prescribing with adherence and drug interactions Role and responsibilities of pharmacies Online pharmacies in China Considerations about affordability and accessibility of pharmaceuticals Family Doctor Barriers to effective family doctor system Health Insurance The Basic Medical Insurance for Urban Employees The Basic Medical Insurance for Urban Residents The New Rural Cooperative Medical Insurance Considerations about Health Insurance Traditional Chinese Medicine Conclusions

13 15 18 20 22 26 27 29 30 31 32 34 38 38 39 40 40 41 42

2. 2.1 2.2 2.3 2.4 2.4.1. 2.4.2. 2.4.3. 2.4.4. 2.4.5. 2.4.6. 2.4.7. 2.4.8. 2.5 2.6

EHR and implementation in China A brief history of EHR reforms Current patients health record management Benefits of implementing an interoperable EHR system Challenges and Issues for EHR interoperability Lack of Unified Planning and Governance Lack of Willingness to Share Information Issue of Two Separate Systems Lack of Legislation and Regulation Issue of Interoperability Developing EHR Knowledge and Skills Working on Mobile Health Moving towards Cross-country Data Exchange Visit and interview with doctors at Shanghai Tenth People's Hospital Conclusions

46 48 49 54 55 55 56 56 57 57 58 58 59 60 62

RESEARCH METHODOLOGY 3.

Methodology

DESK AND FIELD RESEARCH 4. 4.1 4.2 4.2.1 4.2.1.1 4.2.1.2 4.3 4.3.1 4.3.1.1 4.3.2 4.4 4.4.1 4.4.1.1 4.4.2 4.4.2.1 4.4.2.2 4.4.2.3 4.4.2.4 4.4.3 4.4.4 4.5 4.5.1 4.5.2 4.5.2.1 4.5.2.2 4.6

Introduction on healthcare digitization Digitization of healthcare organizations Healthcare digitization facilitates patient access to health records with PHRs Case study: the Fascicolo Sanitario Elettronico (FSE) Benefits of FSE Considerations on FSE Digitization of Public Administration and E-Government Case Study: E-Stonia Innovative elements and novel approaches to implementation Case study: Digital Single Market Technology behind digitization Big-data utilization and emerging trends in health care Discussion about Big-Data Blockchain Technology to Ensure Security of Medical Records How Blockchain works Blockchain in Healthcare Case study: E-stoniaâ&#x20AC;&#x2122;s X-Road Considerations on Blockchain Artificial intelligence and Machine Learning for early diagnosis The growth of wearable medical devices Digital transformation in China Market and classification of Health Applications in China Tencent for EHR interoperability in China WeChat WeDoctor Conclusions

68 68 70 72 76 76 77 78 81 89 91 94 96 97 101 102 103 105 106 108 110 115 117 118 120

5. 5.1 5.2 5.3 5.3.1 5.3.2 5.3.3 5.4

Service design and implementation Service design definition Service design for healthcare Case Study: A service design approach for the implementation of EHRs Phase 1: Exploration Phase 2: Ideation and reflection Phase 3: Implementation stage Conclusions

122 122 123 125 125 126 128 130

CONCEPT GENERATION 6. 6.1 6.1.1 6.1.2 6.2 6.3 6.4 6.5

Introduction to the concept phase Problem definition WeChat Health Application User Interface Considerations and reflections of the service Concept System map Interviews Conclusions

132 132 134 139 140 142 146 146

7. 7.1 7.2 7.3 7.3.1 7.4 7.5 7.6 7.7 7.7.1 7.7.2 7.7.3 7.7.4 7.8 7.8.1 7.8.2 7.8.3 7.8.4 7.9

Co-design workshop Co-design team Co-Design program Complementary tools Personas Activity 1: Warm up Activity 2: introduction Activity 3: pick a scenario card Activity 4: Build the customer journey Activity 4: scenario 1 Activity 4: scenario 2 Activity 4: scenario 4 Activity 4: scenario 9 Activity 6: Build the user interface Activity 6: scenario 1 Activity 6: scenario 2 Activity 6: scenario 4 Activity 6: scenario 9 Conclusions

149 150 151 152 154 158 160 162 164 166 168 170 172 174 176 178 180 182 184

CONCEPT DEVELOPMENT 8. 8.1 8.2 8.3 8.4 8.5 8.6 8.7 8.8 8.8.1 8.8.2 8.8.3 8.9

Development introduction App Integration Wireframe My area Emergency Management Patient Summary and EHR management Privacy settings and data consensus Self-diagnosis Doctorâ&#x20AC;&#x2122;s access to the patientâ&#x20AC;&#x2122;s data Testing phase Testing with users Testing session program Feedbacks Conclusions

186 186 188 189 190 192 193 194 197 198 199 200 203

CONCLUSIONS 9.

Final considerations

204

BIBLIOGRAPHY 10.

Bibliography

206

ACKNOWLEDGMENTS 11.

Acknowledgments

214

CHAPTER 1 1

THE SITUATION OF THE HEALTHCARE SYSTEM IN CHINA

Compared with other countries, China faces more significant challenges regarding the distribution of quality and accessible medical services.1 Besides, China is the country with the most significant number of hospitals and inhabitants in the world. Nevertheless, the distribution and allocation of medical resources are incredibly uneven: 80% of medical supplies and patients are concentrated in large hospitals in major cities, while 20% are in general practice clinics.2 In China, public hospitals currently account for more than 80%, and the network of hospitals is classified according to a three-tier system (primary, secondary or tertiary), with each tier further divided into three functional levels.3 Hospital tiers are based on a scoring system that ranks an institution’s ability to provide medical care, medical education, and conduct medical research. The primary care facilities prevents and manages common diseases, identifies critical cases, and transfers them to a higher class hospital. The purpose of the second class hospital is to monitor the high-risk group and provide technical support for a first-class hospital. The goal of the third class is to serve large demographic areas, to offer a specialized medical service, and to deal with scientific research. Unfortunately, China’s current primary care system is fragile. People generally assume specialists and hospital care more than primary care, which leads to

being staffed with relatively less-educated workers and is under-resourced. Decades of neglect have eroded public trust to the point where many seek care for simple ailments such a cold or hypertension at a tertiary hospital. Addressing the weakness of the primary care sector and, at the same time, reducing overreliance on hospitals is essential for efficient resource allocation in the healthcare system. There is significant overcrowding in China’s urban hospitals, with doctors anecdotally seeing upwards of 60 patients a day.4 This situation limits the time available for effective diagnosis and management for each patient, with a focus instead on prescription writing and renewal.5,6 Furthermore, it makes treatment inefficient, contributes to a lack of trust in the lower classes of hospitals among patients and healthcare operators. Some studies have attributed the consequence of this negative circle to the over-exploitation of the third category hospitals, the emptying of the lower category hospitals, the waste of time and money in over-examinations. Since hospitals do not have an archive of shared data and do not communicate with each other, patients’ health information is limited to the facilities they visit. Also, patients are only in possession of their health records through a health booklet that is frequently lost and whose information is limited and untransparent.7 The heart of the new health reforms, which have been under development since 2009, is the tran-

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Introduction of the characteristics of the Chinese health system and the challenges of the coming years.

sition to a patient-centered health model.8 In recent years, doctor-patient conflicts resulting from the difficulties of interaction between patients with the health system. Furthermore, tertiary hospitals often take on teaching and research activities and are pioneers in adopting Health Information Technology (HIT). HIT has the potential to improve the efficiency and quality of modern healthcare systems, re-thinking current health record practices, and create new inclusive systems that give patients increased access to their medical records and implementing the communication lower-classes facilities. With the creation of alliances between hospitals, the Government wanted to encourage collaboration between different structures, promoting better support for the lower hospital dropouts where there is a lack of specialization.9 However, without standardization in the processes of acquisition, storage, and use of health data, there is no opportunity to have a significant return in terms of quality and efficiency.10 From 2009, the healthcare system in China has been going through a New Medical Reform to address rising difficulties in the accessibility and affordability of its healthcare services for its citizens. The health reforms aim to improve the efficiency of the services, seeking to focus on prevention and the centrality of the person.11 However, if health reforms over the years have led to a rapid renewal of health facilities

and equipment, the lack of qualified and well-trained staff makes the transition to a preventive and efficient health system slow and challenging, as well as adversely affect the perception of the patient.12 This chapter will deepen some critical areas of the Chinese health system. These elements will serve to define a framework of common issues to bring out new opportunities.

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1.1

UNEQUAL HEALTH RESOURCES ON THE TERRITORY

A prevalent dilemma among economists is whether China will grow old before it becomes rich. If that happens, and the population gets stuck in a middle-income economy, China could face an unprecedented crisis. This risky future scenario has led China to gradually revolutionize the entire healthcare system, along with the pension system, ensuring access to different forms of personal health equipment and solutions for those most in need.13 The problematic challenges that China is facing today relate to deep-rooted problems and, therefore, will not begin to calm down until the second half of the 21st century. In terms of health personnel and hospital facilities, China has a significant disparity in resources between urban and rural areas. While the ratio of physician-to-citizen per

thousand inhabitants in urban areas is 3,92, in rural areas, it falls to 1,59.14 The most prominent problem is the disparity in health capacity between urban and rural areas. According to data provided by the National Bureau of Statistics of China (NBSC), the difference in healthcare capacity affects both human capital and physical facilities; the disparity is double to triple. The NBSC reveals that 576 million people live in rural China, so they enjoy and benefit from facilities and resources less than 2-3 times more than the remaining 813 million people living in urban areas. Moreover, the extent to which China’s urban residents benefit from the health care system is questionable. Of course, this disparity translates into a disastrous mortality rate and differences in life expectancy between the two areas.15

Figure 1 Source: NBSC. China Statitical Year Book. NBSC. (2009)

China’s Healthcare Capacity • Urban and Rural Divide, 2017 11

8,25

10,87

5,5

8,75 2,75

5,01

3,97 1,68

4,28 1,62

Doctors

Medical Technical Personnel Urban

Rural

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Many factors cause a disparity in health resources in China. The paragraph examines the challenges that cause differences in the territory by comparing data and trends.

4,19

Despite the significant progress, the outof-pocket costs to the Chinese health system are considered a significant problem. Even though in the last 17 years, out-ofpocket costs have almost halved and have been replaced by social and government benefits, compensation and expenses, however, the Chinese system is still far from being socially favorable compared to developed economies. In 2015, out-of-pocket spending corresponded to 32% of heart spending in China; while the share is 11% and 13% in the United States and Japan respectively. This data is another aspect that explains why Chinaâ&#x20AC;&#x2122;s healthcare system is not mature enough to manage an aging population.16

The structural problems of the Chinese health care system will increase exponentially as the population ages. In particular, from 2050, the Chinese economy will face a significant challenge, with around 150 million people over the age of 80. A major demographic tsunami is ready to swallow up Chinese society, so infrastructure needs to be adapted to these paradigmatic changes in its economy. China should combine technical upgrades of the entire infrastructure with policy solutions.17

Figure 2 Source: NBSC. China Statitical Year Book. NBSC. (2009)

Mortality Rate of Major Diseases per 100k People in China, 2017 160

141,6

157,6

154,4 126,6

120

52,9 36,3

6,2 0

7,4

Infectious diseases

2,7

2,8

Mental disorders Urban

Heart Disease

Stroke Rural

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External Causes of Injury

Figure 3 Source: Fu, Zhao, Zhang and Chai. (2008)

Distribution of Health Expenditure in China, 2000-2020 100 75 50 25 0 2000

2002

2004

2006

2008

2010

Out of Pocket

2012

2014

2016

Social

50 16

14,2

43 39

12,4

12,5

12,4

37,5

2020

Government

Chinaâ&#x20AC;&#x2122;s Aging Population from 1950 to 2100 50

2018

9,6

24 21

8,1

22 19 4,9

12,5

2,8

0,3

0,2

0,3

0,4

1950

1960

1970

1980

0,6

0,9

1990 2000

1,3

2010

1,9

2020

Median Age of Chinese Population

2030 2040 2050 2060

2070 2080 2090

Share of Persons Aged 80+

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2100

Figure 4 Source: United Nations & National Bureau of Statistics of China. (2020)

1.1.1

BRIDGING THE GAP BETWEEN URBAN AND RURAL AREAS WITH THE MEDICAL CLOUD

A Medical Cloud is a cloud computing service used by healthcare providers for the storage, maintenance, extraction, transfer and backup of personal health information (PHI). The Medical Cloud provides healthcare applications in Medical Imaging, Diagnostic Decision Making, Telemedicine, Video-cloud and medical collaboration solutions.18 The technology has the ability to drive healthcare services and facilities from urban to rural areas through largescale collaboration and various forms of cloud applications. Medical Cloud is a potential mass solution for the rejuvenation of healthcare infrastructure at the national level that would enable China to address the health sectorâ&#x20AC;&#x2122;s current and future challenges, reducing the distance between urban and rural areas and soften the problematic healthcare structure in China. Sharing Medical Images is one of the most important solutions that Medical Cloud in China will enable. This application includes storage, sharing, and collaboration of image reading by experts and doctors remotely, regardless of the physical location of the patient19. With the 5G connection technology, it is also possible to share real-time MI and MRI with doctors around the world, regardless of where the patient is. The application potential of this technology is, therefore, vast, and for China, it will be another possibility for rural patients to take advantage of the expertise of doctors in urban areas. The only high barrier cost

will be the use of MI and MRI devices in rural areas; however, financial costs are the secondary problems in China compared to the human capital problem. Currently, although they receive incentives to work in rural areas, Chinese doctors and medical staff prefer to work in urban areas. Doctors in rural areas receive non-standardized training, only three years of vocational schooling, and have limited experience. Legally, they also face restrictions on what treatment they can provide. Because of the low remuneration, many doctors also have to do other jobs to support themselves and their families. Clinics without qualified staff and adequate equipment fuel the cycle of mistrust of patients, towards doctors, and lead patients to go directly to better-rated level II and III hospitals.20 Although telemedicine could support these doctors, many rural areas still lack infrastructure as a stable connection and adequate technology to support progress. Medical imaging is, above all, a high-tech medical process that requires specialized personnel. Cloud-based electrocardiography (ECG) enables interoperability between mobile and fixed devices by sharing ECG data from wearable mobile health devices. Interoperability is the ability of different information systems to access, exchange, integrate, and cooperatively use data.21 The relevant aspect is the consistent tracking of data over time to assess the performance

Literature Review / 20

This paragraph examines a technological solution that can represent a potential for connecting the urban and rural areas and improving local health.

of the patient’s heart. Heart problems are the principal cause of death in China. Reasons such as air pollution, smoking, and unhealthy urban environment exacerbate the problem. Any solution to improve the cardiovascular health of the Chinese will have significant beneficial effects on a macro scale.22 Medtrum ( ) has several advanced solutions to address the problem. The company provides wearable intelligent hardware for constant cardiovascular monitoring and a health cloud application to store, share, and analyze health data with third parties and doctors.23 Tasic and Ristov’s “The Three Tier Architecture” explains the mechanisms24: health data collection is through wearable, individualbased devices, and sensors. This data and information are organized and collected through that individual’s mobile deWvice, and the entire accumulated information is shared with the cloud so that it can be reviewed and used on-demand or at any time, wherever it is needed. The whole system brings enormous efficiency with tangible macro benefits.

the one hand, less specialized doctors are instructed in the correct setting of the machines to reduce the error coefficient in diagnoses; on the other hand, patients receive better support, reduce the perception of insecurity and risk for lower hospital categories and can be monitored through electronic devices remotely. This system distributes resources evenly across the territory and helps to make the system more patient-centered. To understand the situation of the Chinese Health System and its complexity is necessary to break down the most critical areas. Then, chapter 2 will define the common denominator of these areas: Health Records.

The aim of the Medical Cloud system, which is practical for the Chinese territory, is to compensate for the lack of high-level specialized doctors by promoting the remote sharing of diagnoses, reviews of patients’ medical records, and information on the setting of Medical Imaging equipment. In this way there are multiple benefits: on

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1.2

HOSPITAL TRIAGE AND PRIMARY CARE

The first critical area examined is hospital triage. According to McCann & Ames, in medical terms, â&#x20AC;&#x153;triage is widely defined as the selection or prioritization of patients based on acuity.â&#x20AC;?25 Triage is a term that is often associated with the emergency department (ED). Patient presentations in the ER are unforeseen and unpredictable,26 which means that patients with different care needs may present themselves at the same time or in a short time. This condition makes it necessary to give priority to patient care. The purpose of triage assessed in ED is to ensure that patients receive treatment in order of clinical urgency.27 This quick clinical evaluation determines the priority with which they will be seen and treated.28 In many countries, such as China, this initial assessment is considered a nursing role.29 Performing triage and deciding on acuity assessment is an advanced and challenging task that is crucial for a personâ&#x20AC;&#x2122;s visit to ED, the decisions are made under extremely stressful conditions, under the pressure of time, and without adequate clinical information. Failure to do triage appropriately could lead to deterioration of health while waiting for very sick patients. Triage is an important step that concerns not only the user experience but also ED operations, such as patient movement through the ward and the effective use of resources.30

During the last decade, rapid economic and technological advances in mainland China have seen an increased incidence of injuries sustained in road traffic accidents, as well as chronic conditions, such as coronary artery disease, stroke, cancer, and diabetes.31 These factors highlight the need for the development of a well-designed and responsive medical system, mainly focused on manage patient flow and timely treatment. When patients go to the ED, in most cases, they will interact with a nurse who performs triage. In some Chinese mainland hospitals, nurses can use tools in their initial assessment of the patient who presents to triage. These tools consider subjective and objective patient data, including the location of pain and acute diseases, such as abdominal pain, chest pain, and myocardial infarction. Once evaluated by the triage nurse, patients will receive a priority status that helps to determine their journey through the ED, including the length of waiting time for treatment, which area of the ED they belong to, and which doctor will give them the treatment. The approach used to prioritize the patient could change according to the hospital, but the two most common approaches provide the patient with either a category or a score. Depending on the severity of their illness or injury, patients are triaged into a category, generally ranging from category two to five. The

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Primary care in China is underused. This paragraph describes the factors that determine this situation.

category they receive will decree their wait to be seen and treated.32 The new guidelines of the MoH support for a four-tier approach to triage, with categories that include: life-threatening, emergent, urgent, and non-urgent. “Patients who receive a level 1 category should be seen and treated immediately. Patients in the level 2 category should be seen within 10 min by a doctor in the resuscitation room or rescue room. The waiting time for patients with a level 3 category must not exceed 30 min. The guideline does not give the details about waiting time for patients in the level 4 category;” (Ministry of Health of the People’s Republic of China, 2012b).33 After triage assessment, patients should wait in designated waiting areas, rather than a communal waiting area. Preparation for triage appears to be

primarily driven by the employer and mentorship by a nurse experienced in triage through short courses and workshops, and it involves not only by nurses working in the ED but also by nursing students. The content of triage training currently includes “triage assessment, triage process, how to register patient information, and how to deal with sudden events.”34 A study by Ge et al. (2012),35 which explored the training needs of triage nurses, found a demand for essential life support, abnormal electrocardiogram identification, triage skills, and protection from workplace violence.

Figure 5 Triage registration room of Shanghai Tenth People’s Hospital of Tongji University

Source: Federico De Luca Field Research, (Nov. 2019)

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1.2.1

BARRIERS TO EFFECTIVE TRIAGE: THE PATIENT’S PERCEPTION LOOP

The lack of guidelines for triage training and the variation of content in the country has limited the preparation of human resources. It has fuelled the perception of nursing staff not meeting the requirements. These limitations make it challenging to evaluate and validate current processes by the nurses. Another barrier to effective triage is the large numbers of non-emergent patients presenting to the ED. Daily, this presents a considerable challenge to effective triage, as it is difficult for triage staff to detect patients requiring more urgent care affecting triage accuracy and patient safety by delaying patient waiting times.36 In mainland China, the implementation of the “unlimited emergency policy” established that anyone, including the emergent and non-emergent patients, can access the ED, and the hospitals cannot refuse any patient.37 As a consequence, ED overcrowding is the result of a general lack of understanding by the public regarding the role of ED and ED triage.38 Thus, increasing public awareness of the role of ED and triage is necessary by the government, including an immediate need for further research into the development of ED triage. Although the government has promoted and encouraged the use of the primary care system, Chinese patients increasingly prefer access to higher-level hospitals. The resulting overcrowding of top-level hospitals and under-use of primary care facilities

is detrimental to the population’s investment in health. The organization of the Chinese hospital system is in three levels, of which the lowest level (level 1), together with unclassified facilities, constitutes the primary care system. As there is no formal access selection, patients can access the system at any level and facility of their choice. It is often the case that patients prefer access to higher-level hospitals, thus directly bypassing primary care facilities. As a result, upper-level hospitals are overcrowded. At the same time, primary care facilities remain underused. The healthcare reform launched in 2009 has led to significant investment in strengthening lower-level hospitals and several policies to improve the use of lower-level facilities. However, the number of visits to lower-level facilities continues to decrease compared to the total number of visits, while the share of visits to upper-level hospitals continues to increase.39 The lack of efficient use of primary care makes the health system investments made over the last decade in improving health outcomes less effective.40 This dynamic is particularly frequent for rural residents, resulting in worsening inequalities in access to health services and health outcomes between rural and urban residents. There is a historical reason. During the Mao era, China was a predominantly agrarian society. Barefoot doctors were the primary

Literature Review / 24

care providers and formed the backbone of the health care system.41 These workers were well regarded internationally and effective at delivering care for rural populations at low cost with a focus on public health interventions.42 This reasonably robust primary care system collapsed with Chinaâ&#x20AC;&#x2122;s market liberalization reforms as public funding evaporated. Over the next two decades, primary care languished. The number of practitioners decreased as wages and prestige were poor, training opportunities were minimal, and public trust in primary care decreased. Decades of neglect have eroded public trust to the point where many seek care for simple ailments such a cold or hypertension at a tertiary

hospital. Addressing the weakness of the primary care sector and, at the same time, reducing overreliance on hospitals is essential for efficient resource allocation in the healthcare system.43 Beside, overcrowding in higher-level hospitals has contributed to a deterioration of inpatient/doctor relations and quality of care. Medical staff â&#x20AC;&#x2122; represent an influential factor at all stages, for both areas, and with the same effects. Medical skills and personal relationships were the two aspects of the medical staff that particularly influenced the choice. The lack of competence (skills) of the staff of lower-level facilities often led citizens to choose higher-level facilities.44

Figure 6 The choice model of healthcare facilities among rural residents. OOP, out-ofpocket. Source: Liu, Yun, Liwei Zhong, Shasha Yuan, and Joris Van De Klundertm. (2018)

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Figure 7 The choice model of healthcare facilities among urban residents. OOP, out-ofpocket. Source: Liu, Yun, Liwei Zhong, Shasha Yuan, and Joris Van De Klundertm. (2018)

According to an interview with Liu Y, Zhong L, Yuan S, et al. (2018),45 patients tend to prefer healthcare facilities they know the medical staff. Patients living in urban areas are better acquainted with procedures for access to treatment. The result of the increased wealth of information and familiarity with the procedures has brought three advantages: better quality of care, better service attitude, and a lower cost because they do not have to pay extra registration fees and tests. Patients in rural areas find the procedures of higher-class hospitals more complex, leaving them disoriented and abandoned. A critical factor in patient satisfaction is the continuation of treatment by the doctor himself. In this

sense, patients have expressed their appreciation for a policy to facilitate the consultation of the same doctor for repeated visits. Conversely, they might stop treatment after their doctor has left. Another aspect that strongly influences the choice at various stages for both demographic zones is the availability of drugs or equipment. The unavailability of certain drugs or advanced equipment has led patients to turn to higher-level facilities, especially at the diagnosis stage, when specific advanced equipment is deemed necessary. According to Liu Y, Zhong L, Yuan S, et al. (2018),46 while most respondents indicated that they might avoid service in

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higher-level facilities within the case of a minor illness thanks to costs and inconvenience, some urban respondents indicated that they might choose it in any case. For them, the higher quality of care exceeded

the higher cost of transport, service, and drugs, moreover because of the discomfort of the complex physical environment.

Figure 8 Reception area in a rural hospital in Shaanxi. Source: http://www. coresponsibility. com/ruralhealthcare-fieldnotes-shaanxi/ (2017)

Figure 9 Reception area of Shanghai Tenth Peopleâ&#x20AC;&#x2122;s Hospital of Tongji University.

Source: Federico De Luca Field Research, (Nov. 2019)

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1.3

MEDICAL DRUG PRESCRIPTION

China is facing a significant epidemiological transition as chronic diseases are replacing infectious diseases as the leading causes of mortality and morbidity. China has an aging population, increasingly unhealthy lifestyle habits from rapid urbanization, and some of the highest smoking rates in the world. This situation has led to a rapid increase in rates of chronic diseases such as diabetes, cardiovascular diseases, and cancer. Dealing with the rise of chronic diseases will require a coordinated response that involves public health and primary care, strong regulations, and a pharmaceutical system able to deliver quality, affordable medicines for these conditions. The pharmaceutical environment in China, which is fragmented by regulation and perverse in market incentives, meets many challenges, including unbalanced drug quality, access, and affordability, irrational medicine use.47 However, as the second worldâ&#x20AC;&#x2122;s largest market by value, there are many opportunities to create a pharmaceutical industry capable of providing affordable quality medicines for its people and the world. Nevertheless, for irrational drug usage, it is the responsibility of the patients and physicians to avoid it.

The rapid transition in China from a government-administered system to a market-oriented one in the 1980s determined a significant decline in government spending and commensurate increases in private spending. One of the most controversial policies was the 15% Mark-up, which allowed hospitals and physicians to make a profit from drug sales. As government funding decreased, healthcare providers sought drug revenues to survive. The result was drug over-prescription and challenges with access and affordability. In 2009, the government launched radical reforms to reform the health system, identifying five priority areas, including Chinese pharmaceuticals.48

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This chapter looks at how medicines are prescribed in China and the issues related to irregular prescription of drugs.

1.3.1

IRRATIONAL PRESCRIBING AND CONTROVERSIAL INCENTIVES IN HOSPITALS

Irrational prescribing is a severe query in China, with rates of antibiotic and injection use considerably higher than recommended by international guidelines. Over-prescribing has led to high rates of antimicrobial resistance and adverse drug events. The 15% mark-up policy and patientsâ&#x20AC;&#x2122; expectations brought to think these treatments were needed. There are a series of factors that explain the irrational prescribing patterns of antibiotics and injections outlined above. From the patientsâ&#x20AC;&#x2122; side, they frequently ask for antibiotics irrespective of necessity because of a common belief among Chinese citizens that antibiotics are a remedy.49 A survey of rural Chinese residents revealed that 62% of parents gave their children antibiotics without consulting a physician.50 This self-medication is possible because of the extensive practice of pharmacies selling antibiotics even without prescriptions.51 Moreover, some patients believe that newer antibiotics are better and more effective when, in reality, they often are no better.52 Similarly, widespread belief in China holds that injections are more effective than oral medications.53 This attitude is the consequence of a lack of knowledge by the population about the adverse consequences of over-prescription, such as antimicrobial resistance and infections from injections.54,55 Some physicians have admitted to prescribing antibiotics and injections upon request

to please their patients as patients are free to choose their medical providers.56 On the providersâ&#x20AC;&#x2122; side, the Chinese Government directly finances less than 10% of the operating costs of hospitals, directing them to seek other sources of funding.57 Drug sales account for over 50% of all hospital revenues in many places, with antibiotics specifically contributing to up to 47% of drug sales.58 Besides, many hospitals link physician income and bonuses with meeting a specific prescription number,59 representing a powerful incentive for physicians to overprescribe. Historically, doctors and hospitals have received incentives to prescribe expensive and optional treatments. The fact that the majority of public hospitals are paid retrospectively via fee for service and are not held financially accountable for the quality of the service provided, made this condition incentivized. Physicians working in public hospitals typically have low base salaries but are rewarded with massive bonuses linked to overall hospital revenue, which is predominantly driven by sales of pharmaceutical products. As such, physicians have an incentive to prescribe according to the profit margin rather than clinical efficacy. Pharmaceutical manufacturers have also compromised the integrity of the physicians moving in the form of kickbacks to capitalize on their willingness to prescribe medicines to maximize profit.60

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To contrast overprescribing, the government launched a new reform in May 2014. Publicly funded hospitals adhering to the reform are required to sell drugs at the price they have bought, so as not to overburden patients and doctors will be much less inclined to prescribe excess drugs. On the other hand, publicly funded hospitals are allowed to adjust the price of their medical services, such as consulting doctors, so that hospitals and their medical staff are paid decently for their work, instead of relying on the sale of medicines.61

Key indicators of irrational prescribing in China Prescribing indicator

Number of medicines per prescription Percentage of antibiotics per 100 encounters Average of antibiotics per encounter Percentage of injections prescribed per 100 encounters

2.94 52.60 0.75 40.75

Influential factors driving irrational prescribing Influential Factors

No. (%) China (n = 67)

Health care providers’ lack of skill and knowledge

9 (13,4%)

Patients’ lack of knowledge

14 (20,9%) 2 (3,0%)

Poor quality of health services Health facility’s inadequate human resources and lack of qualified medical staff

Pressure from heavy patient load

2 (3,0%)

Pressure from patient demands

1 (1,5%)

Economic incentive and profits from prescribing medicines

20 (30,0%)

Insurance status of patients

4 (6,0%)

Lack of effective control and regulatory mechanisms on medicine use

3 (4,5%)

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Figure 10 Source: Mao W, Vu H, Xie Z, Chen W, Tang S (2015)

Figure 11 Source: Mao W, Vu H, Xie Z, Chen W, Tang S (2015)

One of the adverse consequences of irrational prescribing of antibiotics is because it can lead to critical drug reactions and allergic responses.62 In China, every year, about 2.5 million are hospitalized with severe adverse drug events. For instance, 60% of all children with acquired deafness developed the condition through the irrational use of ototoxic drugs.63 Irrational prescribing also causes antibiotic resistance, making less ef-

1.3.1.1

fective the antimicrobial drug that was initially adequate for the treatment. The consequence of the loss of effectiveness of anti-infections drugs is reflected in the increased health care costs, prolonged hospitalization, and substantially increased social and economic burden.64 The morbidity and mortality from infections caused by multidrug-resistant pathogens are higher in China than in many other countries.65

CONTRAST IRRATIONAL PRESCRIBING WITH ADHERENCE AND DRUG INTERACTIONS

Medication adherence and drug interactions represent two other critical aspects to contrast irrational prescribing. Adherence is particularly important for chronic diseases, which require patients to follow drug therapy respecting the timing of medicine consumption. According to an estimation, up to 50% of patients do not take their medicines as prescribed.66

The government has implemented policies to encourage rational prescribing such as the Zero Mark-up policy and national antibiotic stewardship campaigns. China must continue to improve the quality of prescribing by promoting physician and patient education, providing incentives for proper prescribing, and using clinical support tools such as practice guidelines and electronic medical records.67

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1.3.2

ROLE AND RESPONSIBILITIES OF PHARMACIES

Currently, over 70% of drug selling happens through hospitals, even though the new regulations require hospitals to focus on providing medical services rather than selling drugs.68 Hospitals currently derive around 40% of their revenues from drug sales. The work plan of the State Council of 2015, which foresees that the sale of medicines represents a maximum of 30% of hospital revenues, has encouraged the expansion of pharmacies. Unlike hospital pharmacies, where most sales take place, community pharmacies have a convenient location, easy accessibility, and play a key role in ensuring access to

1.3.2.1

health services. Their responsibilities have gradually increased from drug delivery to pharmaceutical service provision.69 These services include tasks such as patient education and monitoring of prescription profiles. Healthcare reforms have also underlined the responsibility of pharmacists to encourage the use of low-cost medicines and to promote the rational use of medicines. Pharmacists can play an essential role in rational prescribing and the use of cost-effective therapies, helping to decrease the prescribing of unnecessary antibiotics and cut hospitalization costs.70

ONLINE PHARMACIES IN CHINA

For many years, China highly regulated the online sale of drugs. Only a few pharmacy chains with store outlets could sell online to consumers, and the large e-retailing giants such as Alibaba were only licensed to provide information on medications to patients. Despite this, online pharmacies are undergoing a period of unprecedented growth in China. Tens of thousands of prescription drugs are freely available on the websites of two of China’s largest e-commerce companies, Alibaba and JD.com, with sellers taking advantage of a loophole to skirt regulations. The drugs are paid for on delivery, allowing Alibaba and

JD.com to classify the transactions as “offline.” Nevertheless, they host the listings, take a marketing fee from the stores and, in some cases, deliver the orders through courier companies they part-own. This dynamic represents a grey area between illicit and licit. Policies encourage the industry to make innovations but retain the space for penalties.71 Other digital realities such as WeDoctor Pharma by WeDoctor (Tencent), integrates its healthcare services to provide patients a “one-stop shop” to receive a virtual consultation and receive an electronic prescription that can be immediately filled.72

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1.3.3

CONSIDERATIONS ABOUT AFFORDABILITY AND ACCESSIBILITY OF PHARMACEUTICALS

Chinaâ&#x20AC;&#x2122;s health care expenditure in drugs is a much higher proportion of other countries. Most of this spending occurs in hospitals rather than pharmacies, which is also different from most countries. Currently, off-patent drugs dominate Chinaâ&#x20AC;&#x2122;s drug market by value. In the next years, as the number of chronically ill people increases, the list of agreed essential medicines will grow.73 Despite significant increases in government investment in healthcare, there is still a perception that healthcare is expensive.

The extent of insurance coverage is still very slight, with high co-payments and low ceilings. While generic medications were generally appropriately priced, off-patent originators were much higher in price. Surveys also demonstrate that accessibility for many medicines is challenging.74 To improve affordability and access in terms of health insurance, drug pricing, and drug reimbursement way is still long.

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1.4

FAMILY DOCTOR

The aging population, combined with the rapid growth of chronic diseases such as cancer, cardiovascular diseases, and diabetes are a challenge for China. The ability of China’s healthcare system to overcome these challenges lies in the efficiency of primary healthcare. No healthcare system in the world can meet the challenges of this size without relying on a capillary system that avoids the overload of upper-level healthcare facilities. In this context, family doctors are an essential entity to monitor and redirect patients. According to Dr. Gauden Galea (WHO Representative in China), the training of a good number of qualified general practitioners is necessary to strengthen the primary health service and lighten the enormous workload of large public hospitals. At the moment, China has less than two physicians for every 10,000 residents, according to data from the World Health Organization. Only around 60% of the nation’s licensed medical practitioners have undergraduate degrees, and only about 10% have graduate degrees.75 Chinese State Council’s target of 2-3 qualified general practitioners per 10,000 urban and rural residents by the end of 2020, will require 280,000-420,000 new general practitioners for China’s population of 1.4 billion.76 Since the health reform of 2009, there have been many achievements to improve tiered-health care service delivery. The cen-

ter of this reform focused on establishing a strong network of community health centers and rural health workers, led by family doctors, on bringing quality, affordable health care closer to the population.77 In 2016, the Government encouraged family doctors, through national guidelines, to settle in areas with a low population and limited transport. The aim is to improve service delivery capacity in primary healthcare facilities and promote innovations in service delivery, such as wearable health monitoring devices. These reforms have led to a considerable increase in the number of community health centers and certified family doctors over the last decade.78 To better understand the figure of the family doctor, it is necessary to take a step back. “China’s introduction and definition of General Practice (GP) can be traced back to 1989, over 20 years ago, when Capital Medical University established the first GP Training Center. The GP system was a status of doctors working in the community, being part of the public, and able to offer a helping hand when others were suffering from illness. Therefore, they were also called family doctors or family physicians, as part of families and serving as a primary provider in China’s health management system. The unique attitudes, skills, and knowledge of GPs have qualified them to provide sustained and comprehensive

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The Family Doctor and Primary Care are a point of reference for the weaker categories. However, there are several issues related to the underuse of these hospital categories. The paragraph examines what they are.

medical care, health maintenance, and prevention services to each family member.â&#x20AC;?79 The family doctor is the Primary Care Provider (PHC) and provides comprehensive, continuous, and appropriate health management, addressing the health problems of over 90% of the population. The health care provided by family doctors in Community Health Service Centers (CHSCs) and at home has played an active role as the â&#x20AC;&#x153;guardianâ&#x20AC;? of health systems, making efficient use of health resources. PHC services and community health education by family doctors could relieve up to 70% of

the disease burden.80 By establishing stable, long-term collaboration between family doctors and community residents, it is easier to identify and assess the health risks for contract residents, limit the incidence of Non-Communicable Diseases (NCDs or chronic diseases) and complications, reduce the likelihood of hospitalization and overdose.81 Besides, comparative studies of high-income countries have shown that the higher the ratio of family doctors-citizens, the lower the overall health care cost of the country and the better the quality assessment score.82

Figure 12 Family Bed Visits by appointment for those patients who are unable to leave their homes; this activity leads to higher levels of stress and works complexity for doctors. Source: http://www. chinadaily.com. cn/life/201602/26/content_23658992. htm (2016)

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1.4.1

BARRIERS TO EFFECTIVE FAMILY DOCTOR SYSTEM

With the official issuance of the Guidelines for the establishment of the General Medical System by the Chinese government in 2011, several well-developed pilot cities such as Beijing, Shanghai, Shenzhen have started to establish the family doctor system, facilitating residents to sign with family doctors and use CHSC-based first contact and referral services by appointment. However, the system needs critical implementations to reach the level of the most developed societies. From one side, the family doctor system needs to improve the design of service packages, the collaborative referral mechanism, staff training. Furthermore, on the other side, the main problem facing family doctors is the lack of passion and enthusiasm.83 Another issue with the system is how to attract locals to sign with family doctors. The current residents who have contracted with family doctors are mainly the elderly or patients with chronic diseases. The local government usually gave priority to the poor, the chronically ill, the elderly, and the disabled, who had more significant needs and levels of use for community health services. However, the rest of the population is not followed up by a doctor continuously, resulting in gaps in patientsâ&#x20AC;&#x2122; clinical information and treatment.

Citizens are suspicious about the professionalism of family doctors and have prejudices that prevent them from using primary health services. The family doctor system has weak cooperation between different patients during the service leading to a trust crisis. It results from the limited consciousness of sharing, including resources, information, responsibility, empathy, which influence the relationships between patients and physicians and the quality of this service directly. It also results from a lack of empathy in the whole process. Besides, family doctors organize â&#x20AC;&#x153;Family Bed Visitsâ&#x20AC;? by appointment for those patients who are unable to leave their homes; this leads to higher levels of stress and works complexity.84

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Figure 13 Source: Pan Xuedan, Xu Jingzhi, Giulia Capriotti, Simone Chiani. “Family Doctor’s Visit in Siping Community.” Tongji University – D&I Shanghai, (2018): 22.

Persona

Patient

Doctor

One-Hour Nanny

Age: 65~90

Age: 30~50

Family: Married, with a daughter Attitude and Values: Feel happy and

Family: Married, with a child Attitude and Values: Have strong sense

comfortable about doctor's visit

of responsibility for patients, and patient

Age: 30~50 Family: Married, with a child Attitude and Values: Have sense of responsibility

Family bed visits journey map

TOUCHPOINTS

EMOTIONS

EVENT TIMELINE

NOW

family, nanny doctor goes to patient’s home

doctor visits the patient (2-3 mins)

doctor chats a bit with him (5 min)

NANNY

answer patient’s question about drug list

PAPER

he takes a pic/writes he iterates the 2-3-4-5-6 prescription again on a paper to he writes doctor goes prescription remeber it to another patient

back to healthcare centre

need to go back to the pictures or the papers; info could be fragmented

other work

he must register patients INFO in the helthcare system

(other tasks)

(drugs, reasons, conditions)

PAPER

SYSTEM

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Figure 14 Source: Pan Xuedan, Xu Jingzhi, Giulia Capriotti, Simone Chiani. “Family Doctor’s Visit in Siping Community.” Tongji University – D&I Shanghai, (2018): 23.

PROBLEM STATEMENT

FAMILY DOCTORS ISSUE MAP

Family bed doctor system have WEAK COOPERATION betwee service. It results from the LIMITED RESOURCE FLEXIBILITY, a fluence the relationships between different participants direct in the whole process.

ISSUES

CONCEPTS

ENGAGEMENT

EMOTION

REPLACEMENT

A B C D E F EDUCATION PARTICIPATION PREJUDICE FREEDOM COMMUNICATION SATISFA (PROFESSIONAL & PUBLIC)

1 Family doctors are not enough; Increasing number of patients; Not everyone can have a family doctor

2 Limited knowledge about emergence & daily care (protection & prevention) for care providers, including family and nannies.

3 Some patients’ family does not trust doctors’ prescriptions without participating in the process. Doctors need help from patients’ family or nannies, when patients cannot express themselves correctly.

4 Doctors do not trust nannies who do not participant in the visit process, because of short-term employment or limited passion. (Passion – Nannies lack of motivation to interact with doctors. Nannies are not informed about patient healthy condition)

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5 Patients do not trust doctors and prejudge the prescriptions based on their life experience. Some patients ignore doctors’ medical advices.

6 Limited independence scope for patients. (Limited healthcare from patients themselves.)

7 Single information channel between doctors and patients without accompany.

8 Doctors pay hi attention and energy on first visit, and patients have alertness of fir visit. (Elderly children are diffident.)

Figure 15 Source: Pan Xuedan, Xu Jingzhi, Giulia Capriotti, Simone Chiani. “Family Doctor’s Visit in Siping Community.” Tongji University – D&I Shanghai, (2018): 17.

en different participants, and LIMITED ENGAGEMENT during the and LIMITED THE APPLICATIONS OF COMMUNICATION which intly. It also results from the LACK PARTICIPATORY AND EMPATHY

SHARING

EMPATHY

COOPERATION

G H I J K L ACTION GEOGRAPHY EFFICIENCY ACCOMPANY RELATIONSHIP ENJOYMENT RESOURCE

9 igh Doctors pay high attention and t energy on first visit, and patients have rst alertness of first visit. (Elderly children are diffident.)

10 11 Money payed Time & energy does not match wasted to go to the quality of the patients’ home. service. Financial value of older generation.

12 Time issue: There is time value gap between doctor work time and patients’ daily life schedule.

13 Doctors try to record the patient information in an easier way. Visit’s data are not registered at patients’ home. Patient data need to be registered when family doctors back to healthcare center.

14 15 Patients Family doctors followed by are required a lot family live better and more. Patients followed by nannies only, need to build a close relationship with nanny.

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16 Elderly life in nursing home and their home is not amazing/ enjoyable.

1.5

HEALTH INSURANCE

As said in chapter 1.3, after the economic reforms launched in 1978, China experienced rapid economic growth in the past two decades, benefiting many sectors of the economy. Still, the healthcare system has not reflected economic success. The shift from a centrally-planned economy to a market-oriented economy has created problems in the public health sphere. In response to the emerging difficulties in its healthcare system, the Chinese government has made numerous efforts to reconstruct a universal coverage system since the late 1990s. The health insurance system collapsed in the late 1970s, leaving a significant number of residents without insurance coverage. Since the condition

1.5.1

was particularly problematic in rural areas, the Chinese government has over decades developed three systems in both urban and rural areas, providing coverage for over 90% of the population.85 Given the fragmentation of the territory at the social and structural level, the government has established three major health insurance schemes: In urban areas, The Urban Employees Basic Medical Insurance (UEBMI) in 1998, and the Urban Residents Basic Medical Insurance in 2007; In rural areas, the New Rural Cooperative Medical Insurance (NRCM) in 2003. Below is a brief introduction to each scheme. The

THE BASIC MEDICAL INSURANCE FOR URBAN EMPLOYEES

Urban Employees’ Basic Medical Insurance System (UEBMI) took place in 1998 and represents the first step in setting the health insurance system in urban areas. With UEBMI, urban employees in public and private sectors access basic medical insurance coverage. Local governments set the level of deductibles, copayments, and reimbursement caps according to local economic levels. The employers’ contribution is 6% of the employee’s salary, while the employees’ percentage is 2%. “The rev-

enue collected from premiums is distributed evenly into two independent accounts: the medical Savings Account (MSA) and the Social Pooling Account (SPA). All employees’ contributions and about 30% of employers’ contributions go into the MSA, and the remainder of the employers’ contributions goes to SPA. The two accounts are managed separately and pay for different services: the MSA covers outpatient and emergency services and drug expenses, and the SPA covers inpatient services.”86

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Health insurance is an essential tool for access to medical care. The paragraph explains the health insurance is structured in China and the critical issues related to it.

The payment process is a three-phase passage model: first, the insured draws money from a personal account to pay medical bills; second (when the personal account is over), the insured pay the bills out of pock-

1.5.2

et; third, when there is enough credit on the card, the medical bills are jointly paid by the socially pooled account and the insured.87

THE BASIC MEDICAL INSURANCE FOR URBAN RESIDENTS

In 2007, the State Council launched the Urban Residents Basic Medical Insurance (URBMI), to cover primary and secondary school students who are not covered by the UEBMI, young children, and unemployed urban residents voluntarily. The primary purpose is to provide coverage for urban residents without formal employment to eliminate impoverishment resulting from chronic diseases, preventing catastrophes in medical expenditures. Besides, the government contributes with a smaller amount of subsidies; the financing of this insurance program mainly comes from participants’ premiums. The local government set the premium of the policy, according to the local economic level, the medical care expense level, and the participants’ family wage level. For low‐income families, disabled students, and young children government provides extra subsidies.88

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1.5.3

THE NEW RURAL COOPERATIVE MEDICAL INSURANCE

In recent years, especially after the SARS outbreak in 2003, health reform, especially in rural areas of China, has received unprecedented attention from the central government. With the collapse of rural health insurance at the end of 1970, about 90% of the rural population remained without any health insurance coverage. Therefore many had to pay out-of-pocket for medical expenses. In 2003, the State Council issued a decision to strengthen the rural health system further, establishing the new Rural Cooperative Health Insurance (NRCM).

1.5.4

The NRCM scheme covered rural residents voluntarily in order to avoid impoverishment caused by catastrophic expenditure due to infectious and endemic diseases.89 The program now covers around 98% of Chinaâ&#x20AC;&#x2122;s rural population. The government pays most of the annual premiums for insurance, but the coverage only applies to inpatient treatments at recognized hospitals that are part of the state healthcare system. Consequently, patients are still responsible for the cost of drugs and consultations during outpatient treatment.90

CONSIDERATIONS ABOUT HEALTH INSURANCE

In general, three main parties are involved in the health system: users (patients), health care providers (such as hospitals), and the government. The government, in particular, plays a vital management and monitoring role, as healthcare providers and users follow the convenience of healthcare system incentives. The limit of insurance relates to territoriality. The insurance is limited to the area of residence and often represents a limit in access to specialized health services in other areas. If the citizens want to receive medical treatment in an area not included in their insurance package, they will have

to pay out of their pocket. This situation further accentuates the disparity between urban and rural areas, the last characterized by a lack of specialized staff and state-ofthe-art equipment. Besides, a survey of a sample of individuals aged between 20 and 35 years from different areas of China but domiciled in Shanghai showed that the process of using insurance to cover medical expenses is complicated as they reside in other regions.91

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1.6

TRADITIONAL CHINESE MEDICINE

Traditional Chinese Medicine (TCM) is a holistic system for diagnosis, prevention, and treatment that has existed for thousands of years. The underlying theory of disease underlying TCM differs from western medicine. From a treatment perspective, TCM incorporates acupuncture and the use of herbal preparations. Despite numerous success stories attributed to TCM, scientific evidence of effectiveness for most TCM preparations is limited or non-existent.92 Although the use of western medicines is increasing, TCM still plays an essential role in China’s healthcare and continues to receive substantial government support. Approximately 60% of the population has consulted a TCM practitioner at least once93 TCM drugs made up approximately 30% of TPE in 201294 and they have a particularly high market share in the retail pharmacy setting.

TCM has been used in China for thousands of years and remains a core component of healthcare in China. It uses a theoretical understanding of the body and disease that is fundamentally different from the western medicine paradigm. Regulation and monitoring of the quality of TCM preparations are challenging as they are often mixtures of compounds, are easily prone to contamination, have variable manufacturing processes, and their active ingredients are often not known. Interactions with other TCM preparations and western medications pose a significant risk to patients and can be difficult to predict. That is why it is essential to provide prevention and information on the use of these medicines.96

There is a common misperception that because something is “herbal” or “natural,” it is, therefore, safe. This reasoning is patently untrue because, such as any medication, TCMs can have positive therapeutic effects but also can cause significant harm if misused. That is why post-marketing pharmacovigilance is very important, especially given the lack of a pharmacological understanding of many TCMs.95

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Compared to the West, two types of medicine coexist in China. It happens, however, that these practices often come into conflict.

1.7

CONCLUSIONS

China is facing severe health challenges in the coming decades; its population is rapidly aging, urbanization has led to unhealthier lifestyles, and environmental degradation and rates of smoking are incredibly high. These factors are fuelling a rapid increase in the rate of chronic diseases such as diabetes, cardiovascular diseases, and cancer. The economic burdens associated with this epidemiological transition will also be extremely high. There are several steps that can improve China’s ability to deal with these emerging health challenges. The health system should turn towards dealing with chronic diseases on a population level. The new perspective will be a reliable public health apparatus that engages in preventive activities, health promotion, and better public policy and regulations. The primary care system needs big implementations, as it is capable of providing cost-effective and accessible care for chronic patients. Finally, the pharmacological management of chronic diseases is essential for good health. Having a system capable of providing affordable, effective, and safe medications for common diseases such as hypertension and diabetes will be crucial. The conclusions are summarised below. •

There is still a huge disparity in health capacity between urban and rural areas. Doctors in rural areas receive non-standardized and short training and have limited experience. Legally, they also face restrictions on what treatment they can provide. Because of the low remuneration, many doctors also have to do other jobs to support themselves and their families. Clinics without qualified staff and adequate equipment fuel the cycle of mistrust of patients, towards doctors, and lead patients to go directly to higher-level hospitals. Medical Cloud is a potential solution for rural patients to take advantage of the expertise of doctors in urban areas. This application includes storage, sharing, and collaboration of image reading by ex-

perts and doctors remotely, regardless of the physical location of the patient. In this way, doctors with lesser competence can implement their knowledge, improve their skills remotely assisted by specialized physicians with reduced risk of failure. •

A robust primary care system can lead to better access, higher quality care, increased preventive activities, and more efficient use of resources, particularly in China’s specialist-driven system. Although the government has promoted and encouraged the use of the primary care system, Chinese patients increasingly prefer access to higher-level hospitals. The resulting overcrowding of top-level hospitals and under-use of primary care facilities

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Keyword: #trust #awareness #education #user-centricity #prevention

compromise the quality of the care and effectiveness of the treatments. Increased public awareness of the role of the Emergency Department and triage is necessary to avoid overcrowding of the ED. •

•

Citizens are suspicious about the professionalism of family doctors and have prejudices that prevent them from using primary health services. The family doctor system has weak cooperation between different patients during the service leading to a trust crisis. It results from the limited consciousness of sharing, including resources, information, responsibility, empathy, which influence the relationships between patients and physicians and the quality of this service directly. Moreover, the range of coverage of these essential services is still only used by the lower social levels, aggravating the perception that the service is of lesser importance. Drug interactions between Traditional Chinese Medicine and western medicine are an area of potential danger, particularly as the mechanisms of action of many TCMs are not well elucidated, and interactions with other TCMs and western medications are difficult to predict. In this situation, information and prevention are essential to avoid misuse.

•

The limit of insurance refers to territoriality. The insurance is limited to the area of residence and often represents a limit in access to specialist health services in other areas. This situation further accentuates the disparity between urban and rural areas. Moreover, the process of using insurance to cover medical expenses is complicated when residing in other regions. Patients need to be better cared for and guided, an increase in awareness of how insurance works among citizens would reduce costs and cut hospitalization times.

•

Irrational prescribing is endemic within the Chinese healthcare system. It is the consequence of controversial supplyside economic incentives as well as by demand-side factors such as incorrect beliefs about the efficacy of antibiotics and injections. Pharmacists can play an essential role in rational prescribing and the use of cost-effective therapies, helping to decrease the prescribing of unnecessary antibiotics and cut hospitalization costs. China must continue to improve the quality of prescribing by promoting physician and patient education, providing incentives for proper prescribing, and using clinical support tools such as practice guidelines and electronic medical records.

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The main issues concern the system and cannot be radically changed. In some areas, the project could improve certain aspects, especially from the patient side, who is currently the most penalized actor in the system. It is possible to intervene to implement awareness, education, and data tracking at a systemic level, at the user level and hospital level. Patientâ&#x20AC;&#x2122;s awareness, medical education represent, together with data discontinuity and fragmentation management of critical areas where the designer can intervene with the design of a service-system to facilitate the access by the user (patient and medical staff) and create more continuity and organization in the data. In this regard, it is necessary to introduce Electronic Health Records as they represent a common element in the areas mentioned in this chapter and opportunities for the project.

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CHAPTER 2 2

EHR USE AND IMPLEMENTATION IN CHINA

Since in China, the Government introduces new implementations and reforms in the short term; in this chapter, a preliminary interview has been added to the literature review to integrate the knowledge. This semi-structured interview was conducted in October 2019 and involved two types of users. In the first type of interviewees, medical staff with administrative positions and medical department managers were involved, as the information collected was technical and regulatory. The second type of users included both chronic and non-chronic out-patients. The information for this target group concerned the procedures for obtaining and managing their health data. The Chinese population is rapidly aging because of a lower death rate and, therefore, the one-child policy, which was forced to implement in 1979.97 Chinaâ&#x20AC;&#x2122;s growth rate of permanent inhabitants reached 56.1%, and senior residents (that is aged 60 and above) exceeded 220 million in 2015, which is 16.1% of the total populace. This demographic transformation causes a continuous increase in healthcare requests for quality services.98 This situation cannot be efficiently provided due to fragmented healthcare service systems and irregular distribution of healthcare service resources in China. Besides, Chinaâ&#x20AC;&#x2122;s e-health system development is significantly affected by its economy, administration, geography, de-

mography, and culture. Economic development in China is hugely unbalanced. Urban development is faster than rural development, and growth in eastern regions is more rapid than that in western areas. These features have led to healthcare challenges for the central Government, which announced a comprehensive healthcare reform in 2009 to deal with the difficulties without a detailed roadmap.99 Since the founding of the Chinese Hospital Authority (CHA) in 1990, the Chinese Government has consistently strengthened the development and implementation of the Health Information System (HIS). The purpose is to enhance the distribution of healthcare and to create improved electronic information available to managers for better decision making.100 The electronic health record is storehouse information regarding the changes in health status and treatment services given to a patient in his/her lifetime.101 Health Information Systems (HIS) can be used by different types of users, from healthcare professionals to patients, from doctors to public health officials. They collect data and compile them so that they can be used to make health-related decisions. Among the most relevant components that make up HIS are Electronic Health Records (EHR) and Electronic Medical Records (EMR). These two systems are almost used reciprocally. The electronic medical record replaces the paper version

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Introduction on the use of EHR systems in China, their potential and challenges.

of a patient’s medical history. The electronic health record includes more health data, test results, and treatments.102 Although in some societies, such as the USA, there is no difference in the use of the terms Electronic Health Records (EHRs) and Electronic Medical Records (EMRs), on the contrary, these expressions refer to completely different conceptions. Moreover, EMR and EHR have distinctive implications. In China, EMRs are linked to systems that manage patient records for medical purposes. At the same time, EHRs refer to systems that manage cross-population health data and are usually controlled by public health organizations. Both terms are essential to achieve local, regional, and national objectives to increase and improve the quality and effectiveness of patient care and reduce the costs of healthcare delivery and patient safety. However, the EHR is subordinate to the existence of EMR. EHRs cannot reach their full potential without an integrated and interoperable health support system.103

information systems supporting data collection, storage and access in hospitals or healthcare centers, to provide information and knowledge across diverse settings to improve healthcare quality, safety, and efficiency”.104 Ministry of Health (MoH) allocated $9.5 billion in 2012 for the development of medical data and the improvement of information systems in Chinese public hospitals. The EHR system has been proposed as a technology that improves the quality of patient care as it reduces medical errors, controls, and reduces medical spending. However, the financial impact is still uncertain in China. The implementation EHR system over six years has accrued a thoroughly evaluated net benefit of $559,025 in all general hospitals. The benefits accrued mainly from savings in the creation of new EHRs, reduced management time resulting in fewer full-time employees, savings in adverse drug events (ADE) and dosage errors, improved expense capture, and minimized billing mistakes.105

To remedy inequalities, the Chinese Government has set as its objective the implementation of Electronic Health and EHR to improve efficiency, quality of care, empowerment of consumers and patients, education of doctors, the extension of the scope of health care, ethics, and equity. “EHRs are defined in China as computer

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2.1

A BRIEF HISTORY OF EHR REFORMS

The Chinese Government laid a focus on the healthcare sector already from its 12th Five-Year Plan (2011-2016). The Ministry of Health in China defined its 3521 project for e-health, where the ‘3’ refers to three levels of healthcare data platform: country, province and region levels; the ‘5’ points to five applications: public health, medical services, new rural medical insurance plan, basic drug plan, and general management; the ‘2’ indicates two systems: electronic health record (EHR) system and electronic medical record (EMR) system; and the ‘1’ represents one particular network for healthcare106. Regarding the EHR and EMR, a health record is the information of health conditions about a healthcare recipient at Community Health Service Centers (CHSCs) or other health institutions. In contrast, a medical record is the information of the hospital clinic and therapy about a medical care recipient. EHRs are collected, stored, and shared by regional CHSCs, while EMRs are recorded or generated, stored, and shared by hospitals. To foster the digitization of the health, the Health Information Standards Professional Committee (HISPC) of the MoH prepared a series of guidebooks, standards, and specifications for both EHR and EMR systems. Besides, the government has developed supportive e-health policies, in-

cluding national e-health policy, national multiculturalism policy for e-health, national telemedicine policy, and e-government policy. (Implementation of E-Health Record Systems and E-Medical Record Systems in China) According to China Hospital Information Management Association (CHIMA) computerization in hospitals in China started in the late 1980s. Some economically advanced cities started to develop regional EHR systems in 2002. After studied international experiences from other countries, like the US, UK, Canada, Australia, by 2009, China had completed its pilot test of the EHR systems in major cities. In 2010, the Chinese Government financed EHR initiatives in five provinces. In these stages of EHR attempts at regional and provincial levels, some cities or provinces developed their standards and systems. Based on these systems, the MoH developed standards and specifications for subsequent stages. Until 2011, 120 EHR systems had been completed, 40 systems were under development, and 100 systems were in the planning phase. By the end of 2020 all residents will have their own e-health records.

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2.2

CURRENT PATIENTS HEALTH RECORD MANAGEMENT

Currently, obtaining a picture of the patient’s medical history requires a significant amount of time and money. A standard medical record contains a variety of structured data, like electronic prescriptions and laboratory values, but a substantial part of the clinical data is unstructured.107 Information usually has variable and complex data types and formats108,109 that are unstructured due to a lack of standardized descriptions and an easy-to-view interface. Therefore, the current medical record retrieval systems would be limited in terms of availability and universality.110 Almost every healthcare provider has set up its own electronic health record (EHR) system. Within hospitals, EHRs are also associated with the health insurance systems for payment of claims, with single patient identifiers. Though EHR systems differ significantly by the hospital and are usually not integrated or interoperable, patients often must bring with them a paper-based health record if they want to see doctors in different hospitals. Even if hospitals are under the same local bureau of health or affiliated with the same universities, EHR systems are often different. Patients generally do not access EHR systems for information, scheduling appointments, sending secure messages, refilling prescriptions, or accessing doctors’ notes. To promote collaboration between health entities of different categories to ensure access to primary care facilities for patients with minor health problems and

reduce congestion in third category hospitals, the Chinese Government has created the Hospital Alliances.111 Hospital alliances are regional hospital groups, often including one tertiary hospital and several secondary hospitals and primary care facilities.112 In this way, it is possible to implement the interconnection and sharing of medical information between hospitals, a prerequisite for building regional systems of medical partnership, integrating medical care and promoting division of labor and cooperation. From a financial perspective, an analysis of the costs and benefits of the EMRs system implemented in hospitals shows a positive return on investment. According to Yu et al. (2016), the initial results of the implementation of the Health information exchange (HIE) in the city of Shanghai, China, indicate a significant reduction in medical errors and duplication of testing, saving at least RMB 48 million per year with overall growth in the quality of care after implementation.113 Effective Healthcare needs contributions from both healthcare providers and patients. However, the healthcare process has minimized the patients’ engagement in China. With limited health resources worldwide, the provider-centric model is often less than optimal in treating patients. Thus, there is a need for innovative tools and methods to engage patients in their care, such as promoting patient awareness

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The paragraph describes patients’ access to their clinical data, the limitations, and difficulties of sharing and organizing this data among different healthcare facilities.

about their health issues, educating them to have proper health knowledge, and supporting effective communication between patients and clinicians.114 In particular, it is believed that “for patients to be true partners in the healthcare encounter, they must have access to their own personal clinical health information”.115 Accessing clinician-generated data is critical to shift the provider-centered paradigm

to one of patient-provider collaboration. As Piras and Zanutto116 describe it, such patient-centered information exchange aims to redefine the patient as “...not ‘the object described in documents exchanged among doctors,’ but rather ‘the actor most concerned with the flow of information through the carers’ network”. Multiple studies support that patients’ access to their medical records potentially

Figure 16 Source: Federico De Luca. “Provider-centric Healthcare and patient’s data in china.” (2019)

Provider-centric Healthcare and patient’s data in China Records book

B as

Patient 1

l t h I n s u ra ic Hea n ce

ist

ri c t

H o s pit

H os

p it a l 2

Emergency Digital Records 1

Hospital Centricity

Pharmacy

Emergency Pharmacy

Digital Records 2 Hospital ID Card 1

Hospital ID Card 2

Data

System Center

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improves the understanding of their condition.117 In this way, patients become active participants in their care;118 it enhances medical management;119 improves the efficiency of communication between the patient and medical staff;120,121 improves the accuracy of EHRs; and increases compliance with clinical guidelines for maintaining health.122 Moreover, various researches show that the majority of healthcare consumers desire access to oneâ&#x20AC;&#x2122;s health information using digital technologies. Besides, studies confirm that good patient awareness of their condition links with higher levels of adherence to recommended prevention and treatment programs, improved clinical efficacy and outcomes, enhanced patient protection within hospitals, and reduced the use of Healthcare. In the case of the Chinese health situation, it is of primary importance to encourage these dynamics. In China, access to health data by patients is not in line with the technological aspiration demonstrated by the nation in the last decade. Because Chinese healthcare is provider-centric, patients are left to themselves without tools to take care of their health situation. Ethnographic research conducted by Chen and Pine (2014)123, consisting of observations and interviews, examined how Chinese patients manage their medical records using a variety of artifacts accumulated and created over a lifetime of health interactions. They conducted a qualitative study

consisting of semi-structured interviews and non-participant observation examining the practices of patientsâ&#x20AC;&#x2122; self-managed medical records at outpatient departments of a Chinese health organization. They chose the outpatient medical records (paper-based) because managed by individual patients, once given by health providers. All the patients interviewed are able to access their outpatient medical records. The information patients can access includes medical history, diagnosis, prescriptions, lab results, radiology images and reports. Doctors handwrite the chief complaint and the medical history on a pocketbook of medical records. Diagnosis and prescription information is entered digitally into a hospital information system and not shared with the patient unless requested. If the patient makes a request, this information is printed and attached to the medical record book.124 Once the patients own their medical records, they are responsible for taking care of their medical records themselves. It is the responsibility of patients to collect and keep their records from different visits and to manage them in a meaningful way for doctors. Every time, during, and after their visits, patients are in charge of collecting test results from laboratory or radiology departments and return them to doctors. They also need to collect records they receive from different doctor visits or different health organizations. Ultimately,

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patients are responsible for bringing their records to their next doctor visit so that doctors can see their medical history. This set of actions allows patients to be owners and organizers of their medical records.125 First, patients keep their records. It is not unusual for patients to carry years of medical records with them during observation, or to learn that they have carefully kept all their medical records at home during interviews. The archive of personal records is extensive and permanent, with most patients keeping the original records from when they were first diagnosed, along with all subsequent visits for that particular disease. Whenever a patient receives any medical records, in the form of medical notes in a booklet, X-rays, laboratory results, or other artifacts, the patient adds these records to his or her medical information archive. The preservation of medical records is essential for patients, and this importance reflects the high degree of responsibility they feel for the storage and management of medical records for themselves and their families. Secondly, research has shown that most chronic patients organize their records according to their condition and importance. The increase over time in the number of patient records that patients file leads to the development of organizational methodologies that allow for easy consultation of their own and their family members’ records.126

Figure 17 Patient medical book from Longhua Hospital, Shanghai University of TCM. (2019)

‘‘Not only I keep all my medical records and read them from time to time, I organize these [information] resources into a ‘health information book”. In showing the organized records to the researcher, he pointed out several sheets of lab results and said ‘‘these red annotations indicate whether readings of lab results are increasing, or decreasing.’’ He proudly said: ‘‘I developed this system all by myself.’’

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Figure 18 Chronic patients organize their paper-based clinical data through methods designed by themselves. Source: Chen, Yunan, and Kathleen Pine. (2014): 409–26.

Figure 18 Source: Federico De Luca. “Access to health information by patients.” (2019)

Access to health information by patients

Medical visits journey

Patient goes to the hospital for a visit

Doctor writes a note on the medical book

Doctor requires an examination (X-ray)

Patient does the X-ray

Patient gives the result to the doctor

Patient withdraws the result

Doctor writes a note on the hospital EHR system

PAPER-BASED

Getting data from his/her journey

Patient asks the hospital for a copy of his/her EHR

Patients archive personal records

Hospital prints Diagnosis and prescription information

Figure 19 Source: Chen, Yunan, and Kathleen Pine. (2014): 409–26.

Users

Federico De Luca. Interviews (Oct. 2019) Qing Cheng, 81 Retired

Ziquan Wang, 22 Student

Chronic • Outpatient

Temporary • Outpatient

❝

I put all the important records in the big plastic bag for each hospital visit and hang them on the wall in our bedroom.

❞

Xiaowen Yu, 29 Mother of a congenital cataract patient

❝

I just moved to Shanghai to study. I don’t have a reference hospital, every time I get a booklet for my health data I lose it or I do not take care to keep track of the data.

❞

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Congenital • In/outpatient

❝

These [medical records] are the most important things for my child. I keep all the records for my child in a separate cabinet ever since he was born and will track them’til he grows up, maybe for his whole life.

❞

2.3

BENEFITS OF IMPLEMENTING AN INTEROPERABLE EHR SYSTEM

In the idealized healthcare environment of the future, our care delivery system and clinical research system will be built on a common IT platform. Both providers and researchers will have access to a comprehensive, 360° view of all anonymous patients through an integrated network of Electronic Health Record (EHR) systems that “talk to each other.” Medicine every day will provide an endless stream of new trials that can be used to improve care in a continuous cycle of innovation. In this way, the scientific world will provide answers on which therapies are most active, which treatment protocol is optimal, and perhaps also on the safety and effectiveness of experimental treatments. Already today, although EHR systems are not yet universally interoperable, they are a rich source of real-world data (RWD) available to researchers. The number of systems used in hospitals and medical practices has reached a critical mass.127 Other advantages of an interoperable HIS system are related to data management. Because the healthcare industry is continuously producing data, healthcare information systems help to collect, compile, and analyze healthcare data, improving healthcare efficiency and reducing costs. So health data analysis can improve patient care. Also, patients often need different and specialized treatments. Health information systems, such as health infor-

mation exchanges (HIEs), enable healthcare facilities to access common medical records, and deliver healthcare tailored to the characteristics of the patient. The use of digital networks to exchange health data creates efficiencies and cost savings. A further benefit relates to the management of the health of the population. Health information systems can aggregate patient data, analyze it, and identify population trends. Technology also works the other way around. Clinical decision support systems can use large amounts of data to help diagnose and treat individual patients. Besides, these systems can map geographical areas, highlight at-risk groups, and contain and predict health emergencies. Also, a better EHR system improves the productivity of the medical healthcare system to monitor the health status of the general public and enhances the management of preventive care efforts. This condition contributes to shifting towards user-centric healthcare, a primary object of the healthcare reforms.

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2.4

CHALLENGES AND ISSUES FOR EHR INTEROPERABILITY

The Basic Structure and Data Standards for Health Records defines that health records consist of personal information and the histories of health services at health service institutions, including children’s health, women’s health, disease management, disease control, and medical assistance. These are typical services provided by CHSCs, which are in charge of resident registration and data entry to EHR systems. To meet MOH’s targets of EHR adoption, local governments encourage CHSCs to register residents by incentive per registration. CHSCs visit residents at home or use residents’ household information from local police stations. Currently, EHR systems are used by CHSCs to store the health information of residents in stand-alone computers. Hospitals have developed EMR systems without a consideration to share information with EHR systems. However, efforts have been made in sharing information with EMR systems when developing

2.4.1

EHR systems by local governments. The importance of developing standardization is evident to all. These standards are crucial to secure interoperability and information sharing of clinical data. Usually, the importance of standardization is fully recognized only when health providers at all levels (including hospitals, community health centers, clinics, township hospitals, and health stations) have an interoperable hospital information system, and there is a need for sharing EMRs, managing EHRs and constructing regional health information networks. Standardization is a prerequisite, and therefore fundamental, for interoperability, still, will not make the problem of information sharing “automatically” solved. The involvement of users and providers should be encouraged in the standardization process because their knowledge and experience on these issues will provide reliable guidance for standardization in the future.128

LACK OF UNIFIED PLANNING AND GOVERNANCE

Hundreds of EHR and EMR systems are developed or are operating in different regions with no or little cross-region data sharing. There is no central governance over regional development and centralized planning for a national system. Because of the lack of a unified national approach,

precise planning, and governance framework, the quality of the EHR and EMR systems and the productivity of the development are low. The consequence has been the use of considerable resources to create repetitive, non-interoperable, and isolated products.129

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In China there is a lack of central governance over regional development and centralized planning for a national EHR system.

2.4.2

LACK OF WILLINGNESS TO SHARE INFORMATION

There is not general guidance, and individual doctors decide to share medical or health information between medical or health institutions. Hospitals have not formed a positive attitude towards sharing information for reasons such as self-funded systems, compatibility, the concern of disclosing critical information to outsiders, and the fear of criticism by fellow professionals. Large and metropolitan hospitals are typically not willing to share information with their smaller counterparts or CHSCs even though the latter is keen on shar-

2.4.3

ing information with the former. As there is an inequality between different health facilities in terms of the level of specialization of medical staff and reputation in the area, facilities are reluctant to share their data for fear of being judged negatively by health professionals in other facilities. As a consequence, doctors from large hospitals tend not to recognize diagnosis and test results from smaller hospitals because of the concern about personnelâ&#x20AC;&#x2122;s proficiency and instrumentâ&#x20AC;&#x2122;s accuracy.130

Facilities are reluctant to share their data for fear of being judged negatively by health professionals in other facilities.

ISSUE OF TWO SEPARATE SYSTEMS

Hospitals have developed EMR systems without consideration to share information with EHR systems. However, local governments put effort into developing sharing information with EMR systems when developing EHR systems. EHR systems and EMR systems are regarded as different systems and operate in parallel, respectively.

While CHSCs enter EHRs into the system, hospitals record EMRs. Data collected in haste may not be complete and accurate. Nevertheless, from EMR systems, it is possible to obtain much information included in EHR systems, where data is collected when patients visit hospitals and, therefore, should be more accurate.131

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EHR systems and EMR systems are regarded as different systems and operate in parallel, respectively.

2.4.4

LACK OF LEGISLATION AND REGULATION

Private data should be secret from non-expected users (secrecy), data should be available for meaningful use (necessity), and critical data must be correct and accurate (integrity) when data are stored in and transmitted between systems. Even though security techniques such as authentication and encryption can address these issues, legislation is necessary to define private data and regulate the meaningful use and trustful operation of the systems. Secrecy and necessity may conflict and must be balanced in system analysis and design. A low level of confidentiality increases the

2.4.5

risk of a privacy breach while an increasing need and low level of necessity may cause unfavorable impacts on health while improving secrecy. Currently, there is a lack of policy and regulation in China for recording, storing, and using personal health information132. EHR and EMR systems are developed and implemented without relevant guidance. For example, EHR system users are identified by national ID numbers, which includes personally identifiable information of residence area and date of birth, and individuals can access their EHRs with ID cards.133

EHR and EMR systems are developed and implemented without relevant guidance.

ISSUE OF INTEROPERABILITY

Because various vendors of software firms, universities, research institutions, etc. developed Chinaâ&#x20AC;&#x2122;s EHR and EMR systems, they are complex and integrate multiple techniques. Most of these systems are isolated. These systems aim to meet the specific needs of the healthcare institutions, including demographics, diagnosis,

and payment without consideration for interoperability.134 Because China has issued its standards, but the interoperation of EHR or EMR systems is more complicated than standard could define software engineering need to seek tailor-made solutions. Moreover, the current measures should be improved, also in terms of security.

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Most of Chinaâ&#x20AC;&#x2122;s EHR and EMR systems are isolated.

2.4.6

DEVELOPING EHR KNOWLEDGE AND SKILLS

Adoption of a national EHR system faces different challenges – clinical, political, technical, cultural/emotional, organizational, legal, and financial. China’s healthcare needs systematic research on EHR/ EMR initiative and EHR education. Currently, hospitals require staff to use the EMR system, and they need to learn to use the system by teaching themselves. They use an EMR system only as a digital form of traditional paper records regardless of the system’s added values. Individuals do not have access to the systems. EHR research and education are needed:

2.4.7

• Government sponsor and guide EHR research on strategies, policies, regulations, standards, framework, and system development and implementation. Researchers from multiple professions should be involved, including medicine and health, information technology, law, management, and society. • Healthcare or medical institutions should provide training for knowledge about the national system and skills to make the best use of it. The government can teach individuals to use the system using existing resources such as TV health programs, TV courses, and online tutorials.135

WORKING ON MOBILE HEALTH

Currently, China has not taken an initiative to access EHRs using mobile devices. However, the sizeable mobile population and mobile phone population determine the significance of mobile health (m-health) in China. As a result of the troubled economy, many people from impoverished regions go to urban and prosperous coastal areas in search of work. These people construct the majority of the mobile population. They rely on mobile devices more than cabled computers to access the Internet.

As of September 2019, about 1.6 billion mobile phone subscriptions had been registered in China. The number of mobile phone subscribers in China has been skyrocketing since 2011, hitting a new landmark of more than 1.25 billion users in April 2014. China should develop a mobile version for the national system, which will realize the benefits of remote monitoring using mobile devices based on the concept of the Internet of Things.136

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2.4.8

MOVING TOWARDS CROSS-COUNTRY DATA EXCHANGE

Based on the statistics released by the Shanghai Municipal Tourism Administration, the number of Shanghai inbound tourist arrivals in January and February 2019 totaled 1.1612 million, increasing by 4.8% over the same period of 2018. The number of Shanghai inbound tourist arrivals in February is 551,700, with a growth of 17.25% over the same period of 2017. As personal disposable income increases year by year, Chinese people tend to spend more on traveling. The demand of China outbound tourism grows continuously. Surveys foresee that the number of China outbound trips will reach 178.4 million, with the total tourism expenditure of about CNY 1.2727 trillion by 2022.137 Some people travel for international medical services. There is a need for a cross-country EHR exchange mechanism and platform. Although sharing EHRs with other countries is not in Chinaâ&#x20AC;&#x2122;s national agenda, local attempts have been taken in this regard.

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2.5

VISIT AND INTERVIEW WITH DOCTORS AT SHANGHAI TENTH PEOPLE'S HOSPITAL OF TONGJI UNIVERSITY

❝

The archive of personal records is extensive and lifelong, with most patients maintaining original records from when they were first diagnosed, along with all consequent visits for that particular disease.

Through a semi-structured interview, it was possible to carry out a preliminary verification of the topics analyzed.

❞

Dr. Zhou Yan

❝

Dr. Zhao YaoJie

Information sharing varies from healthcare facility. If the patient wants to obtain his or her clinical information from the hospital’s Health Information System (HIS), he or she can request a paper copy, but not a digital one. The information shared contains the patient’s medical history, diagnoses, prescriptions, lab results and examinations.

❞

❝

This hospital has joined the government-sponsored “hospital alliance.” In this way, our patient data can be shared with the HIS systems of the hospitals within the alliance. The benefits are considerable, such as saving time, money, and more effective diagnosis.

❞

Dr. Wang JianHui

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Scan the QR Code to access the questionnaire, visualize pictures, and listen to interviews (Chinese only).

Excerpt third class hospital guided visit

1. A doctor shows how to register for medical examinations through the hospital health card.

2. Inserting the patient card. The card contains only the userâ&#x20AC;&#x2122;s personal data and credit to pay for visits and examinations in that specific hospital.

3. Patient registration at the entrance of selfservice kiosks.

4. A patient scans the receipt issued by the kiosk to proceed with the payment. Payment can also be made through WeChat Pay.

5. Once the payment has been made, patients can access the visits. In the photo: Magnetic Resonance Imaging (MRI) examination.

6. Blood test carried out in the queue by a counter. Patients are under stress and their privacy is not protected.

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Figure 20 Registration, checkout and medical visits pictures of Tenth Peopleâ&#x20AC;&#x2122;s Hospital of Tongji University.

Source: Federico De Luca Field Research, (Nov. 2019)

2.6

COCLUSIONS

Although China has decided to focus on the implementation of EHR systems to improve the efficiency of the healthcare system and focus on prevention versus treatment, many challenges remain. Achieving these challenges allows, on the one hand, to improve the distribution of healthcare by providing hospitals with electronic patient information and implementing decision making and, on the other hand, opens the door to a broader range of improvements in parallel health care areas of research and prevention. However, given the speed of the digital transformation of services in China compared to the rest of the world and the focus on user journey innovation138, the implementation of EHR systems has differed significantly from the strong trend shown on other types of services in China. In ten years, the application has been prolonged, has lost the focus on the user (patient), and the lack of technical and legislative uniformity has made this complex system inefficient, as it is not interoperable. The conclusions are reviewed below. •

The clinical data in digital (EHR and EMR) and physical form are fragmented and do not follow the patient over time. This discontinuity negatively affects the quality of diagnosis and treatment. As a consequence, the patient does not trust the medical staff.

•

The lack of operational standards and uniformity of EHR on the territory, in macro and micro scale, negatively influences the efficiency of the whole system.

•

Patients are left alone in their experience in the healthcare system and have to organize their clinical information by themselves. Sometimes, despite having recent analysis and clinical information, they have to redo clinical examinations because they are not recognized or reliable by doctors in different hospitals, causing costs in terms of money and time.

•

Patients’ access to their medical records potentially improves the understanding of their condition, making them active participants in their care. The implementation of EHR involving patients enhances medical management, improves the efficiency of communication between the patient and medical staff, improves the accuracy of EHRs, and increases compliance with clinical guidelines for maintaining health.

•

The increase in tourism and chronic diseases requires a system capable of preventing and obtaining information about patients in the shortest possible time, lowering costs and time, and optimizing the accuracy of diagnosis and treatment.

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Keywords: #standardize #patientexperience #engaging #awareness

A more effective Healthcare needs contributions from both healthcare providers and patients. However, the healthcare process has minimized the patients’ engagement in China. Thus, there is a need for innovative tools and methods to engage patients in their care, such as promoting patient awareness about their health issues, educating them to have proper health knowledge, and supporting effec-

tive communication between patients and clinicians. Patients need to be real partners in the healthcare encounter, to foster it, they must have access to their own personal clinical health information. Patient-centered information exchange aims to redefine the patient as the actor most concerned with the flow of information through the carers’ network.

Negative Circles Health providers waste time in over examinations Hospitals don’t/can’t share electronic data each other

archive of health records Patients lose time and trust in health providers

The information collected is not classified in a standard way

Qualitative inequality of medical resources between different hospitals

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Patients don’t prevent, but directly treat diseases

CHAPTER 3 3

METHODOLOGY

This thesis aims to develop an EHR system platform for patients in China that overcomes the centrality of hospitals in the system and the data discontinuity and fragmentation management. To achieve this aim, it necessary to satisfy these objectives: 1. To acquire knowledge about the functioning of the Chinese health system, in particular, the acquisition and management of patient health data. 2. To highlight critical and unresolved areas that may have the implementation of EHR as a common solution. 3. To understand the contrast between the centrality of the user and the centrality of hospitals 4. To understand the needs of patients in dealing with EHRs. 5. To analyze the Service Design contribution to address the user adoption challenges, using a human-centered, participatory, holistic, and creative approach in healthcare. 6. To collect innovative case studies on service design approaches applied to the EHR system and stakeholders involved. 7. To conduct observations, interviews, and focus group to design a pilot system to validate with stakeholders.

In order to address those objectives, this thesis adopted a service design approach, that is a human centred approach to service innovation. According to Don Norman,139 the human-centered design process starts with a good understanding of people and the needs that the design is intended to meet. Since the final objective of this thesis is the prototyping of a patient-oriented service-system concept for the healthcare sector, it is appropriate that the design process is human-centered, and for this reason, the Double Diamond is the methodology adopted. The Double Diamond process is a structured design approach to tackle challenges in four stages: Discovery (the insight into the problem), Definition (of the area to focus upon), Development (potential solutions), and Delivery (solutions that work). Together, these stages work as a map designers can use to organize their thoughts to improve the creative process. The thesis work consists of four main phases: desk research (to define and frame the problem) and field research (for the development of solutions and test if they work), concept generation phase for the ideation of the solution, and the prototyping phase for the concept evaluation.

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Compared with other countries, China faces more significant challenges regarding the distribution of quality and accessible medical services. Besides, China is the

The very first stage of the Double Diamond model consists of learning more about the different variables that affect the problem and its possible solution. The objective of this stage within the Double Diamond model is to identify and contextualize the actual problem or opportunity. The literature review, in this direction, provides an overview of the situation of Chinaâ&#x20AC;&#x2122;s healthcare system and the areas affected by

government reforms and implementation over the last decade. This research phase offers insights to understand the evolution of the health system, development trends, and challenges that Chinaâ&#x20AC;&#x2122;s healthcare system will face in the following years. This data has been collected through the study of scientific literature on health, management, and information technology and government literature on the reforms adFigure 23 Source: Double Diamond Process, Design Council. (2005)

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opted during the last decade in China. Given the complexity of the system and the lack of uniformity throughout the territory, given the specific geographical area of the project, some more specific information in chapter two, concerning the functioning of the EHRs, was obtained or verified from the literature through semi-structured interviews with medical staff in administrative positions and Chinese citizens. In the Double Diamond model, the definition stage consists of filtering through all the information obtained from phase one and elaborating on it. This can mean identifying bottlenecks or resource waste, seeing hidden opportunities, or setting a list of things to avoid doing in the next phases. The information obtained from the background review needs to create knowledge on the new research topic to highlight project areas where service design can contribute to innovation. A case study methodology is needed to achieve this goal. The case study methodology investigates contemporary phenomena in-depth, in their real context, and is suitable to answer the questions “how” and “why.” As such, case study research is appropriate to address the objectives of this study. This research analyzes several case studies on the digitization of systems, such as the Fascicolo Sanitario Elettronico, specific to the theme of health and the role of the various types of users, and broader cases, such as the E-Government system in Estonia and the European

Digital Single Market. To strengthen the case study data collection includes the triangulation of sources, with semi-structured interviews and focus groups with different stakeholders (doctors, nurses, pharmacists, citizens, from various organizations (hospitals and primary care centers), as well as workshops with these stakeholders and internal design meetings. The in-depth analysis of the contribution of Service Design in the case study of the Portuguese national electronic health record allows the researcher to have a point of view of the designer during the design process and in the choice of the methodology. The Concept generation phase, which includes in the Double Diamond process the second part of the diagram, marks the start of the actual design process, the actual making of the solution to the problem defined in stages one and two. This third phase is the “design of system concepts,” aimed at conceiving and exploring different ideas, which represent system concepts, evaluated in the prototyping phase according to user interaction and user journey and their potential. Through focus groups with experts in health data and co-design with users is possible to make this evaluation. The “system design” is the fourth and final step in the process. During this phase, to enable the implementation of the concept is necessary to outline details. They in-

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clude the relationships between the actors and their motivations to join the new system, the different elements of the system, the activities, requirements, and resources needed to possibly actuate the concept. This process also shows how service design supported a holistic and participatory approach to this development, leading to a successful implementation.

Figure 22 Source: Research Timeline Federico De Luca (2020)

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CHAPTER 4 4

INTRODUCTION ON HEALTHCARE DIGITIZATION

This chapter contains an in-depth examination of digitization in health care concerning the organizational plan, the user plan, and technologies involved. The analysis of case studies is necessary to break down the complexity of the system that makes up the digitization of the user’s health care data and understand what the essential information and the elements of interaction between different actors are. The in-depth analysis of technologies explores new design opportunities to overcome the limitations of the existing system, particularly

4.1

the optimization of clinical data and security optimization. The chapter concludes with a specific analysis of health services’ digitalization in the Chinese context, from which the hypothesis of design intervention emerges. The analysis of the topics covered in this chapter aims to collect information on existing EHR systems and compare them. The aim is to obtain primary information to build the project and specific information to implement the existing system innovatively.

DIGITIZATION OF HEALTHCARE ORGANIZATIONS

Traditional healthcare organizations have realized that they need to change the way they work.140 Still, there are significant uncertainties about how to digitize processes and what are the different options to leverage their potential. One common issue for all organizations is the difficulty of innovating in healthcare successfully. Digitization has revolutionized society in a way we could not have imagined in the 20th century. It has the potential to disrupt healthcare and deal with long-standing issues of quality, spiraling costs, rewarding value.141 The factors affecting non-adoption and abandonment are complex. They include the health condition, technology, value proposition, adopter system (comprising professional staff, patient, and lay caregiv-

ers), organization(s), broader (institutional and societal) context, and interaction and mutual adaptation among all these factors over time.142 Another boundary happens when the approval of innovation by regulatory authorities take years, which is in stark contrast to the rapid development and change of digital solutions, making them already obsolete when available to the final user.143 It is necessary to clarify the meaning of digitization of healthcare organizations to identify what increases the sustainable use of digital solutions by stakeholders. Looking at the ‘Shannon Stacks’ model, it is interesting to classify digital opportunities 1) Infrastructure providers as channels (information pipes) for the transmission of in-

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formation (e.g., telecommunication providers); 2) platforms, devices and software to group, store and deliver content/products of others as transmitters (e.g., integrated software companies); 3) creators of original content as sources in training (e.g., the ‘Shannon Stacks’ model, Chinese Medical Doctor Association (CMDA) or R&D departments in companies and universities); 4) platforms that allow a peer-to-peer exchange to discover “private” content and assets in training as receivers (e.g., patient network websites such as WeDoctor, WeChat); and 5) distributed and connected

intelligence embedded in devices and entities (Internet of Things, etcetera) as destinations (e.g., tracker devices such as Fitbit or iWatch).144 This framework helps organizations to understand the digital health landscape and digital initiatives of their competitors, and to identify opportunities to compete. Besides, this model is useful to understand the complexity of a service system, the actors that are part of it, and serves to define at what level of Shannon’s model this thesis project will operate. 145

‘Shannon Stacks’ Model to the life sciences

Stack 5

Distributed, connected intelligence embedded in devices and entitles (IOT, etc.)

Stack 4

Platforms enabling peer-to-peer exchange to uncover “private” information and assets

Stack 3

Original content creators

Stack 2

Platform, devices, and software to bundle, store, and deliver others’ contents/products

Stack 1

Provide infostructure (information pipes) for transmitting information

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Figure 23 Source: Challagalla, G. Shervani. (2019)

4.2

HEALTHCARE DIGITIZATION FACILITATES PATIENT ACCESS TO HEALTH RECORDS WITH PHRS

As mentioned in Chapter 1.1.1, Medical Cloud is a model of cloud computing that allows on-demand shared network access to configurable resources that can be delivered and released quickly. It is a technology that has proven to improve different application environments and has evolved as a service model, using software, platforms, and infrastructure. The application of cloud computing in the healthcare digitization process improves not only diagnostics and medical operations but also the perception of performance quality and confidence levels in the lower hospital classes. However, if this type of application is accessible by healthcare providers for the storage, maintenance, extraction, transfer, and backup of personal health information, patientsâ&#x20AC;&#x2122; access to their medical records potentially improves the understanding of their condition.146 In this way, as mentioned in chapter 2.2, patients become active participants in their care;147 it enhances medical management;148 improves the efficiency of communication between the patient and medical staff;149,150 improves the accuracy of EHRs; and increases compliance with clinical guidelines for maintaining health. In this way, socialized medicine can be an actionable direction to improve patient inclusion. Socialized medicine can be defined as social media that connects consumers with current and accurate health information

and services. It combines the use of Electronic Medical Records (EMR), Electronic Health Records (EHR), and Patient Health Records (PHR), via social media.151 Socialized medicine includes data sources from various hospital information systems, national disease repositories, and millions of primary healthcare organizations. PHR is contained in the cloud instead of the hospital database and is owned and managed by the patient. PHR allows patients to have access to their health data and encourages self-tracking or self-monitoring, forming groups, and sharing their data privately or publicly through web pages. While EHR and PHR continue to revolve around social networks, healthcare challenges tend to diminish, which will reduce costs, increase sharing and exchange of medical resources, dynamic scalability of resources, on-demand self-service, and increased flexibility, elimination of device limitation and service integration.152 While EMR systems are designed by hospitals for hospitals and stored in a database within the same facilities, EHRs are also designed by hospitals for hospitals with interoperability. The difference is that the latter allows a Beijing hospital, for example, to easily access the data of a patient who has registered in another hospital in Shanghai. PHR is a service that allows patients to create, manage and control their personal

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health information in one place through the web, which has made the storage, retrieval, and sharing of medical information more efficient.153 The difference between a PHR and an EMR is that it is owned and controlled by the patient. With a PHR, a patient can easily modify his or her data without waiting for an administratorâ&#x20AC;&#x2122;s approval. In the case of China, it should not require the hospital to print this information, having transparency and traceability, and avoiding long waits and spending money on new investigations.

It is useful to analyze some case studies to better understand the operation of EHR sharing with patients and PHR. In recent years in Italy, the Fascicolo Sanitario Elettronico (FSE) represented one of the tools of Digital Healthcare, to reorganize and enhance services, coordinate the activities of different operators, ensure better and easier communication and interaction with users and companies potentially involved as suppliers at a central, regional and local level.

Figure 24 Source: Ayeni, Foluso, Sanjay Misra. (2014)

Evolution of intersecting trends

EHR

PHR, EMR, EHR

Devices

Cloud

EMR

Social Media

PHR

(a) between cloud computing and the EMRs, EHRs and PHRs.

(b) between health records, devices and social media.

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4.2.1

CASE STUDY: THE FASCICOLO SANITARIO ELETTRONICO (FSE)

The Italian National Health Service (Servizio Sanitario Nazionale) was set up in 1978, with universal coverage, solidarity, human dignity, and health needs as its guiding principles. It is regionally based and organized at the national, regional, and local levels. Under the Italian constitution, the central government controls the distribution of tax revenue for publicly financed healthcare. It defines a national statutory benefits package to be offered to all residents in every region—the “essential levels of care” (livelli essenziali di assistenza, or LEA).154 The Italian healthcare system has enabled the health service to be widespread and preventionoriented. Within this shared national model, the legislation that assigns competence in health matters to the local authorities at regional level has generated diversified and fragmented regional models, in particular, in terms of degree of territorial centralization in the provision. In order to overcome the fragmentation and barriers of regional health systems, the government planned nationwide the Fascicolo Sanitario Elettronico, which was implemented at a regional level. FSE is the regional digital tool through which citizens can consult and manage their clinical documents, which may be available to health professionals, in case of need, for treatment purposes. Thanks to the interoperability functionality between regions, FSEs can be activated, displayed, and filled in by health operators all over Italy.

This case study concerns the implementation of the FSE in the region of Sicily. Since it is being implemented, interviews with the persons in charge of carrying out the project helped to track the steps of implementation and the difficulties. To promote the FSE is the Legge di Bilancio 2017, which entrusts the Ministry of Economy and Finance with the implementation of FSE interoperability and provides for the possibility for the regions to request the implementation of the FSE. The IT platform on which the various actors and systems of public and private structures interact has therefore provided by SOGEI, an IT company 100% controlled by the Ministry of Economy and Finance. The role of the Region is organizational, informing citizens (5 million), coordinating the role of 5,000 General Practitioners (MMG), and pediatricians (PLS); 60 health districts, 1,300 external affiliated structures, 120 hospitals, and clinics, several hundred public clinics, etcetera. The role of the healthcare companies is to interact with the SOGEI system through the management of the facilities’ data, the profiling of the operators, and the updating of the company systems (Laboratory Information System (LIS), Radiological Information System (RIS), Emergency Department (ED), etcetera.). This project requires a long term of development.

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The research on the FSE required in-depth interviews with experts. Through semi-structured interviews carried out at the Azienda Ospedaliero Universitaria Policlinico Vittorio Emanuele of Catania (Italy), it was possible to analyze all the phases of implementation of the service, the challenges related to the development and prospects. The interview also allowed to deepen in detail the type of clinical information that an EHR system must contain to be effective.

In Italy, privacy is a sensitive issue. It is essential to highlight how the FSE is activated only with the free and explicit consent of the citizen. The activation of credentials can take place physically and online. Citizens can activate their account by going to one of the authorized counters at the health authorities; after reading the information, they must sign the informed consent form. The disclosure explains: • what the FSE is and what its activation entails; • what its aims are; • who can consult it and who can feed it; • how consent may be revoked; • how the citizen can obscure specific data; Citizens can also activate their account online by connecting to the FSE website with the Tessera Sanitaria (Health Card) that is activated (smart card reader and PIN received at the time of activation required) or with SPID (Public Service Digital Identity) credentials. The FSE is addressed at three levels of users: • Citizens accredited to the National Health Service; • Healthcare professionals such as GP doctors, Pediatricians, Specialist doctors, Emergency Room staff, Nurses,

•

Pharmacists, etcetera; Personnel of the health providers in administration positions, whose task is to activate the FSE;

According to their role, users are subject to specific rules regarding access to the FSE and consultation of documents. The same user may belong to several macrocategories and may have several roles and consequently follow different rules. The FSE contains health documents in digital format that deal with the health status of the patient. In the first instance, the FSE contains: • • • • • • • • • • •

Dematerialized electronic recipes (with retroactive function for citizens who give consent after September 2017) Laboratory analysis from public and private laboratories Physiological anamnesis Pathological anamnesis Radiology reports Emergency Department reports Machinery setting parameters Hospital discharge forms Patient Summary Healthcare Profile (“Patient Summary”) Other information entered manually by the citizen in the section of the “assisted person’s notebook.” Income tax exemptions (for citizens entitled to tax exemptions)

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The synthetic health profile, or “patient summary,” is the electronic health document drawn up and updated by the GP/ PLS, which summarises the patient’s clinical history and his/her current known situation. The purpose of the synthetic health profile is to encourage continuity of care, allowing a rapid classification of the patient at the time of contact with the National Health System. The creation and implementation of the Patient Summary through the epSOS (Smart Open Services for European Patients) initiative, togeth-

er with e-prescription services, was born from the need to provide an interoperable and secure framework for the cross-border exchange of health data in Europe. It represents the strategy that the European Union (EU) has undertaken since 2008 to build a framework for the interoperable exchange of e-Health information within the EU Member States.155 The Patient Summary (Patient Summary) is divided into the information components indicated in the following table divided into: Mandatory, Recommended, and Optional data.

(M) Mandatory Data Doctor’s data

Surname, first name, social security number, email address, PEC (certified mail), telephone

Patient’s data

(Surname, first name, tax code, sex, age in years, date of birth, municipality of birth, home address, telephone)

Current status

• Motor capacity • Mental status • Daily activities (professional and personal activities that could affect the patient’s health) • Self-sufficiency • Communication capability • Perception List of problems (diseases) with ICD IX CM codified diagnosis (a system of procedural codes used by health insurers to classify medical procedures for billing purposes). Missing organs/transplants/explants Allergies, adverse reactions to drugs or contrast media or other substances, intolerances, immune risks with Anatomical Therapeutic Chemical classification (ATC) Prosthetics, implants and aids with ICD IX CM coding ICD-9-CM

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Figure 25 Mandatory data (M): the data are mandatory; therefore, they must necessarily be included in the Patient Summary Health Profile;

(R) Recommended Data Family anamnesis

Potential risks of the patient in relation to the history of family members (hereditary risk coded with ICD IX).

Risk factors (life habits)

It shows all life habits relevant to the patient’s clinical picture (e.g. smoking, drug or alcohol addiction, exposure to toxic substances).

Vaccinations

It reports the current status of the vaccinations carried out by the patient of which the family doctor is aware (type of vaccine, date and method of administration, if available ATC/AIC classification).

Diagnostic examinations (laboratory and instrumental examinations), treatments and therapeutic, surgical and clinical trials, relevant visits

They are reported, if relevant: • The results of investigations recorded in the last 2 years with particular attention to the cardiology branch and the results of laboratory investigations (last 3 results) • Surgical interventions • Treatments and therapeutic procedures • Outcomes of specialist visits • The possible participation in clinical trials

(O) Optional Data Family contact details, if any

Person to contact (in case the patient is a minor, or if he or she is not able to understand or want to)

Organ donation consent/ disagreement

Contains the declaration of the donor provided for by art.23 paragraph 3 L.91/99 if it is declared to the GP/PLS

List of relevant problems and coded diagnoses

Non chronic diseases with ICD IX coding

Pregnancy and childbirth

It reports pregnancies and parts of the Patient and any resulting complications.

Monitoring parameters

Blood pressure, Body Mass Index (BMI), weight, height, lung function, etc.

Blood type Active Care Plan

Performance prescriptions, interventions, appointments, active and unfinished procedures.

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Figure 26 Recommended data (R): data are not mandatory, but must be included, if available because they are considered relevant;

Figure 27 Optional data (O): data are optional and are not considered relevant.

4.2.1.1

BENEFITS OF FSE

The Fascicolo Sanitario Elettronico is the regional digital tool through which citizens can consult and manage their clinical records, which may be available to health professionals, in case of need, for treatment purposes. For the success of the FSE project, it is necessary to involve a significant number of citizens using all possible actions to acquire informed consent for the activation of the FSE and to feed it with laboratory reports and other types of reports. The FSE facilitates the monitoring of chronic patients remotely at the local level with a classification by pathological severity. 4.2.1.2

The system also facilitates access to patients with reduced mobility, allowing them to obtain and modify medical prescriptions remotely. On the medical side, every professional has his/her portal and can manage his patients’ medical records in an organized and unified manner. During pandemics, such as COVID-19, this type of system enables health professionals to map positive patients at the local level and to identify possible risk groups with chronic diseases. During the hospitalization of patients, it is also possible to know the clinical characteristics of the patient and to visualize previous pathologies.

CONSIDERATIONS ON FSE

Some issues that slow down the inclusion of the FSE as a new model of consultation and management of patients’ clinical data are related to the acquisition of citizens’ consent to the sharing of their information. Although the FSE is having a positive impact on health professionals, there is still a lack of information and awareness of the potential of these tools on the citizens’ side. In order for the system to achieve a high degree of efficiency, citizens should give their consent to feed the system with their data, and this should be done uniformly. In this way, citizens are covered throughout their experience in healthcare environments.

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4.3

DIGITIZATION OF PUBLIC ADMINISTRATION AND E-GOVERNMENT

Patient data exchange among healthcare organizations is a significant challenge, but it represents an important step towards building a broader and interoperable system. The health information of the patient can bring numerous benefits (chapter 2) for the individual citizen and the whole healthcare system, it can also contribute to facilitating the citizen’s interactions with the public administration. E-Governance is the next step in the integration of an interoperable healthcare system on a higher level. “Electronic government (or e-Government) is the application of Information and Communication Technologies (ICTs) to government functions and procedures with the purpose of increasing efficiency, transparency and citizen participation.”156 E-government identifies the disciplinary framework for

the activities of public administrations carried out with the help of telematic networks and the Internet in particular. These activities may be addressed either to citizens and enterprises, considered as end-users of the administration services or to other administrations, with which they can activate collaboration and interaction processes. In recent years, e-government has become very important because of its potential to bring citizens and businesses closer to the administration, increasing their acceptance and satisfaction, and improving the efficiency and effectiveness of administrative activities in general terms, generating cost savings and improving the quality of public administration services.157 Below there are two case studies on the implementation of health data exchange systems to foster E-Government.

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4.3.1

CASE STUDY: E-STONIA

In 2005, the Estonian Ministry of Social Affairs launched a new e-health concept by phasing in four projects: Electronic Health Record, Digital images, Digital Registration, and Digital Prescription. The implementation of these projects aimed to create a unified national health information system, linked with other public information systems and registers. The core project was the Electronic Health Record, which provides the basic integrated information technology system for all e-health solutions. In terms of information technology applications at the time of the implementation, the Estonian health care sector was regionally and institutionally uneven and lagged far behind the progress achieved by other public services, such as state registers, taxation, e-voting, etcetera. By 2005, most of the approximately 1200 health care services providers were already deploying an information system or using solutions developed by other providers. Simultaneously, the information systems implemented by different health care providers were not mutually compatible and impeded mutual information exchange. From patients and medical professionals, the existing system of paperbased data exchange was extremely timeconsuming and subject to problems arising from accidental destruction or loss of documents.158

The EHRâ&#x20AC;&#x2122;s other socio-economic objectives were to provide accurate medical statistics and cost-effective governance of national health care. Thus, the EHR was not just a large IT project, representing a social development project involving significant partnerships. The implementation of new information technology concepts also included other aspects, such as medical standardization, ethics, and legislation. To ensure effective management of the e-Health project, an exclusive implementation agency, the E-Health Foundation, was established in 2005. This agency was responsible for all aspects of the national health information system and maintained the relevant databases and data exchange systems. The nerve center of the e-Health information system is a centrally managed electronic health record (EHR). This system is a centralized medical database available on restricted access to various partners: medical personnel, patients, and health care authorities. EHR stock information is urgently needed for the patientâ&#x20AC;&#x2122;s treatment, as well as information required for national and medical statistics. Besides, it enables searching for additional information from other dispersed segments of the e-health information system (hospital information systems, central system of family physicians, etcetera.). In terms of IT-architecture, this system is an integrated

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data-exchange system based on the already operational nationwide IT platform in Estonia called X-Road.159 During the pilot phase, EHR performance was first assessed in three of the largest hospitals of Estonia, and other pilot partners joined the testing phase: Tartu Ambulance service, the family physician centers in Koeru, and Järveotsa, and the State register of Causes of Death. The piloting of the EHR integrated system started in mid2007 for a year.160 From a public policy perspective, EHR was a demanding project since the project’s critical success factors were not technical or system innovations but professional consensus and public acceptance of the new form of medical data storage and exchange. The establishment of the EHR Council in 2007 enabled, with the pro-active public information campaign, more efficient preliminary consultation and coordination of the project’s stakeholders views especially on patients’ rights and responsibilities of medical professionals and other persons involved in the process of collecting, exchange and storage of private medical data.161 The overall objective of the EHR project is to integrate and modernize the Estonian national health system’s IT infrastructure. The purpose was to create and upgrade the content and accessibility of essential public

services in Estonia and to elaborate on several new e-health services. As a result, medical services delivered to patients are more competent and effective since doctors can obtain operational information about the patient’s medical condition. For their part, patients can obtain a comprehensive overview of the use of their personal medical information by medical establishments, state authorities, and other participants in the EHR project.162 The project is significant for national health care governance, as the EHR delivers public health-care services more effectively and provides accurate and updated medical statistics enabling better and more efficient health care planning, organization, and financing.163 The general preconditions for the start of the national integration of the health care information system were excellent: during the last decade, Estonia has become well known as a country with advanced e-services, not only in the business sector (especially banking) but also in e-Government services (e-taxation, state commercial, car and shipping registers, e-voting, etcetera). The state has already established and maintains a nationwide technical infrastructure called the X-road platform. X-road is a platform-independent standard interface for secure data processing, connecting of all Estonian public sector databases and information exchange. Other IT solutions, such as digital signatures and ID-card authentication, are recent innovations, and

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their use is comprehensively regulated by national law.164 The EHR concept derived from several strategic plans and policy papers initiated by national healthcare institutions and government bodies - mainly by the Ministry of Social Affairs, under the impact of the European Union e-health related policy-doc-

uments (EU Commission Communication â&#x20AC;&#x153;e-Health - making healthcare better for European citizens: An action plan for a European e-Health Areaâ&#x20AC;?) as well as to the EU Member States universal declaration on their commitment to pursue structured cooperation on Europe-wide cross-border electronic health services.165 Figure 28 Source: Federico De Luca. (2019)

E-Stonia Patient-Centricity E-GOVERNANCE

E-HEALTH

Vehicle Register

Population Register

Hospital 2 Foreign Hospital

E-AMBULANCE

Pharmacy

User 2

PERSONAL E-HEALTH DATA

Hospital 1 Health Insurance Register

ID Card and Mobile ID

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4.3.1.1

INNOVATIVE ELEMENTS AND NOVEL APPROACHES TO IMPLEMENTATION

In terms of system architecture, the Estonian EHR is a sophisticated information technology and communication innovation. The main novel principles of the system are its service-oriented structure, standard communication method with external information systems via a common message center, autonomy of services, and its scalability. Implementation of these principles is essential, not only for the technical performance and security of EHR but also for simplified handling of the system by the end-users, authorized medical personnel or patients. None of these principles is innovative in itself, but their combination in EHR is unique. To comply with the highest management service standards of an information system, the EHR has been developed following the IT Infrastructure Library (ITIL) series of documents, which is the most advanced management service framework for complex IT- solutions.166 The requirements of user authorization and data protection are critical, as EHR handles sensitive personal data. Electronic Health Record is using the most advanced solutions of the X-road platform’s twophased external authorization system. Although Blockchain and X-Road technology share cryptographic hash functions to link data together, cryptographic hash functions (“A cryptographic hash function is an algorithm that can be run on data such as an individual file or a password to produce a value called a checksum. The main use

of a cryptographic hash function is to verify the authenticity of a piece of data.”)167 existed before both systems were invented. Blockchain is a decentralized and distributed database updated through a consensus protocol: every node has a full copy of the database, and blocks stored in it are linked to each other using cryptographic hash functions. X-Road is the backbone of Estonian digital society and allows both public and private sector databases to exchange data.168 EHR authorizes users of the interfaced medical institution’s information systems following their authorization based on public registers information (users must appear on public registers). As a consequence, the EHR administrator will not unilaterally issue rights for end-users. For instance, a family doctor will be given user rights, only if that doctor is listed in the family doctors register, maintained by the state authority.169 The Estonian concept of implementing the national information system of public health care is organizationally innovative because, for the first time, it covers the entire country, all medical service providers, related sectors (pharmacy, laboratories, etcetera.), and all public authorities and institutions. The EU Commission report “eHealth priorities and strategies in European countries” (Report by eHealth ERA, 2007) highlights the fact that such a system of medical information registers the

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health data of every citizen from birth to death for the first time. The realization of the EHR project requires not just implementing advanced information technology across a profoundly complex system. It is widely recognized that significant efforts will be required to organize new service delivery structures and effective management of the new system.170 The most innovative technical aspect is that implementation of the new EHR concept does not cause massive re-engineering of the existing in-house information systems and communication infrastructure, which will just be integrated by special system modules. The message exchange module is the universal EHR infrastructure module. It enables data exchange and interoperability of all integrated users and delivers all messages which conform to the standard message type.171 Providing the users (medical personnel or patients) with message exchange and administration, the agent center makes possible several rights and services, which make the system user-friendly: 1) central security solution, 2) administration of rights and users, 3) authentication and authorization of users, 4) integration with external information systems (via X-road), 5) message administration and message-based integration 6) log-in (for example, for the online Patient Portal).172

Based on advanced IT-architecture, software solutions, security, and accessibility technologies (ID-card authorization), this EHR system is innovative not only technologically but also in the sense of new public services, namely - public service innovation. The Patientâ&#x20AC;&#x2122;s Portal enables the Patient to access his/her medical data irrespective of time and place.173 Four main success factors can be identified from this case study for similar e-government/e-health actions supported by the Structural funds: The practical application of the e-health service has been achieved by using the highest possible security level for storing the health records in the nationwide IT system and enabling access at any time from any location in the country. Besides, close cooperation and mutual trust between the counterparts is essential to encourage discussion in society. Estonia developed and maintained a public e-services infrastructure; Government established the relevant IT infrastructure and digital identification solutions (X-road and the ID-Card authorization and digital signing certification system). The active political leadership of the Ministry of Social Affairs gave ongoing political support for the elaboration of the sufficient legislative framework; the Ministry also actively interacted with the partners,

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Figure 29 Source: Vassil Kristjan. (2015)

X-Road exchange layer system PUBLIC SECTOR

POPULATION REGISTER

HEALTH INSURANCE REGISTER

VEHICLE REGISTER

PRIVATE SECTOR

DOCUMENT RECORD MANAGEMENT SYSTEM

DOCUMENT REPOSITORY

ENERGY

TELECOM

BANKS

ADMINISTRATIVE SYSTEM OF THE STATE INFORMATION SYSTEM

ID-CARD AND MOBILE ID

INTERNET X-ROAD CENTER

X-GIS

GOVERNMENTAL PORTAL YOUR ESTONIA

KIT

CITIZEN VIEW

EIT

ENTERPRISER VIEW

X-ROAD CENTER

AIT

CERTIFICATION CENTER

PUBLIC SERVANT VIEW

USER INTERFACES

while establishing consultation groups or bodies (e.g., the Council for EHR). The visibility of EHR progress created a positive impact on the partnership and policy-making institutions: open discussions and pro-active public relations-policy led by the Ministry of Social Affairs and the E-Health Foundation have created trust as well as attracting new partners from health care service providers, educational institutions (e.g., Tartu University), and public authorities (e.g., Estonian register of Causes of death).

1,4M

population

95%

of health data digitized

â&#x201A;¬2.24M expense for e-health

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99%

of patients with digital record

99%

of prescriptions are digital

Figure 30 E-Health in Estonia. Source: https://e-estonia. com/solutions/ healthcare/ (2019)

E-stonia Patient Portal

Hugo

Figure 31 An Overview of e-Health Services in Estonia

Ly (Mother)

Source: https://bit. ly/2VasvyC (2018) 1. Hugo accidentally broke his arms. The treatment he received can easily be seen by his mother through the patient portal.

2. To enter the portal, his mother uses her digital identity, which is tied to her unique identification code.

3. This is the doorway to the national health system, where healthcare providers gather medical data to herself, her underage children and his mother who has given the autorization.

4. In this way, Ly has an overview of everything related to Hugoâ&#x20AC;&#x2122;s treatment, including doctorâ&#x20AC;&#x2122;s description of X-ray and the list of prescripted medications.

5. Estonian healthcare providers are allowed to access medical data, though the patient can always revoke this right.

6. Every query about the patient is logged, which makes the system reliable and traceable.

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E-stonia Digital Prescriptions

Figure 32 An Overview of e-Health Services in Estonia Source: https://bit. ly/2VasvyC (2018) 1. Ly has to go to the pharmacy to buy medicines for her son Hugo and her mother Viive.

2. Estonia uses digital prescription, which means Ly only has to provide her identification...

3. ...And her sonâ&#x20AC;&#x2122;s personal ID code.

4. The pharmacist can access the system to see the prescribed medication.

5. After providing her motherâ&#x20AC;&#x2122;s Identification Code, Ly can buy medicines for her as well.

6. Digital prescription makes easy for Ly to take care of her loved ones.

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E-stonia E-Ambulance

Figure 33 An Overview of e-Health Services in Estonia Source: https://bit. ly/2VasvyC (2018) 1. Martin has a traffic accident, he hit his head and that caused a small bleeding. He called an ambulance.

2. Through Martin’s personal ID code, it’s possible to query the health informtion system for his medical records.

3. The system will automatically fill in a form and provide the medical data about Martin to the ambulance, including allergies and particular health conditions.

4. On the way to the hospital, the ambulance crew can assesses Martin’s condition and forward this to the health information system.

5. The doctors at the hospital can automatically access Martin’s medical records, including the result of his most recent tests and and e-consultations.

6. This allows hospitals to make any preparations necessary and quickly come to the aid of the patient.

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E-stonia E-Consultation

Figure 34 An Overview of e-Health Services in Estonia Source: https://bit. ly/2VasvyC (2018) 1. Itâ&#x20AC;&#x2122;s been a few weeks since Hugo broke his harm. His family physician removes the cast and discovers a strange rash underneath.

2. She consults a dermatologist (specialist) using e-consultation.

3. The dermatologist can also access the medical records about Hugo.

4. He can give recommendations for further treatments.

5. This provides the best possible care, saving time.

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E-stonia Interoperability

Figure 35 An Overview of e-Health Services in Estonia Source: https://bit. ly/2VasvyC (2018) 1. Ly received a notification through the state portal that her driving license is about to expire.

2. To renew her license, Ly needs a medical certificate, which is issued after a medical check-up.

3. Before going to the doctor, Ly first opens the Patient Portal to fill out a Health Declaration, which itâ&#x20AC;&#x2122;s seen by the doctor to provide the patientâ&#x20AC;&#x2122;s information in advance.

4. The prefilled Health Declaration makes the visit quicker.

5. The Health Certificate is immediately sent to the national road amministration and all Ly has to do is apply for license renewal using the information system of the road administration.

6. In a few days, Ly will receive her new license by mail.

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4.3.2

CASE STUDY: DIGITAL SINGLE MARKET

At the heart of eGovernment is the objective of making public institutions transparent and accountable. The European Commission has recognized the importance of the digital transformation of the state and has been implementing the EU eGovernment Action Plan 2016-2020 since 2006. Since 2012 and on an annual basis, it publishes eGovernment Master Reports comparing the penetration and digitization of eGovernment services in 34 European countries.174 The exchange of health data is a significant challenge due to the sensitive information and privacy issues involved. Considering the European context, where health data have to be exchanged between different European Union (EU) Member States, the challenge appears even more significant as each country has a different national regulatory framework and different national health structures. Europe has sought to address this challenge through the epSOS (“Smart Open Services for European Patients”) project in 2008, a large-scale European pilot project on cross-border sharing of specific health data and services. The adoption of the framework is an ongoing activity, and most Member States plan to implement it by 2020. However, this framework is rather generic and leaves a broad scope for each EU Member State to define roles, processes, workflows, and especially specific integration with National e-Health Infrastructures.175

In order to foster data exchange and standardization, the European Union has been committed since 2008 to building a framework for the interoperable exchange of e-Health information within member states, starting with the Patient Summary (as seen in chapter 4.1.2) and ePrescription services, through the epSOS (Smart Open Services for European Patients) initiative. Despite the creation of a basic standard frame of reference for the EU Member States, the adoption of the standard by the different Member States takes time and effort, and therefore several key obstacles are identified. The epSOS initiative was launched in Europe, involving several stakeholders, but gradually expanded to a large-scale pilot project involving 25 countries and 50 beneficiaries. The initiative was partly funded by the Information and Communication Technologies Policy Support Programme (ICT PSP), under the European Commission’s Competitiveness and Framework Programme, and ended in 2014. The main objective of epSOS was to develop a practical eHealth framework and an Information & Communication Technology infrastructure to enable interoperable access to the health of patients in training, concerning the Patient Summary (PS) and ePrescription (eP) across the different EU health systems.176 This initiative is just a building block for the implementation of the Digital Single Market (DSM), a strategy adopted by the

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European Commission in 2015. The Commission, having realized the importance of digital technologies and the internet, has decided to commit itself to innovate the European Single Market, making it fit for the digital age. Until then, both companies and consumers were faced with barriers in using online tools and services, which prevented not only citizens but also governments from fully benefiting from digitization. The aim is, therefore, to create a Digital Single Market in which the free movement of goods, people, services, capital, and data is guaranteed, and in which citizens and businesses can access goods and services online transparently and fair-

ly, regardless of their nationality and where they reside.177 The Commission has based the Digital Single Market strategy on three pillars: â&#x20AC;˘ Improving access to digital goods and services, i.e., ensuring better access, both for consumers and businesses, to European online goods and services. This is done by removing barriers to e-commerce. â&#x20AC;˘ Creating an environment where digital networks and services can thrive, thanks to fast, secure, and reliable infrastructures. Key elements are cybersecurity, data protection, and transparency of online platforms.178

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4.4

TECHNOLOGY BEHIND DIGITIZATION

The future of healthcare technology is entering a new era as researchers, innovators, and lawmakers strive to improve the accessibility, effectiveness, and cost of care. Technology undoubtedly will play a key role in health care’s future, and technology will empower the transition of health care delivery away from the point-of-care model to the more efficient, effective whole-patient approach to care. Digital transformation in healthcare is the positive impact of technology in health care. Telemedicine, artificial intelligence (AI)-enabled medical devices, and blockchain electronic health records are just a few concrete examples of digital transformation in health care. Innovation is the main challenge, with the primary goal of streamlining physicians’ work, optimizing systems, improving patient outcomes, reducing human error, and lowering costs through fantastic web and mobile experiences. The future of healthcare includes technology that seamlessly combines data on a patient’s medical history, real-time health, insurance coverage, and financial information all to support provider decision-making, improve patient health, and reduce costs. It will begin by expanding access to patient health information. Thanks to technology, patients get better treatment with virtual reality tools, wearable medical devices, telehealth, and 5G mobile technology. Doctors, on the other hand, can

streamline their workflows using artificial intelligence-powered systems.179 Expanded access to data can also help manage patients’ costs. On top of understanding what a patient’s lifestyle is like, providers will soon have access to information such as current benefits offered by insurance providers, based on a patient’s health profile. There’s infinite possibility in the number of things that can be computed as more data is added to allow for better decision-making across healthcare. However, these advancements in technology and data integration will not be without challenges. Data privacy is an essential consideration for the future of healthcare. Although data automation eliminates the most common source of security breaches, these large volumes of useful data create ethical concerns about the proper use of patient information.180 In the following paragraphs, some emerging technologies for the management of clinical data will be explored in depth. In particular, Big-Data, Artificial Intelligence, Machine Learning, and Wearable Devices used in health care to optimize health data use and prevent critical situations, the blockchain, and ensure the security of health data. These insights enable to draw useful information for the design development and the overcoming of some limits that currently characterize existing systems.

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4.4.1

BIG-DATA UTILIZATION AND EMERGING TRENDS IN HEALTH CARE

Previously, a considerable amount of health data was not used due to difficulties in data management, evaluation and analysis, and often remained archived. However, as health care is moving towards evidence-based medicine globally, there is a need for a continuous, systematic review of clinical data for effective and efficient decision-making. This condition requires high precision in operations and decision-making, while time is a vital factor. Therefore, increased use of health data can be an essential way to improve the efficiency and effectiveness of the sector. Access to patient records is necessary for doctors to support their diagnosis and monitor patient conditions. However, collecting, maintaining, and analyzing the health background of each patient promptly is a challenging task. Health data may come from many different sources and in various forms. This volume and variety of data require analysis via big-data algorithmic and machine learning (ML) systems. These systems have the capability to aggregate data from different sources that could provide robust evidence for healthcare purposes181 and can be drivers for intelligent healthcare.182 The source of Big-Data can include the internet, smartphones, IoT or sensor, and mobile devices. Through big-data analysis, meaningful trends and information can be extracted and turned into invaluable in-

sights and knowledge acquisition. Innovations in ML are helping high-dimensional big-data informatics influence and transform the current healthcare industry with a multitude of new initiatives. Currently, deep learning and ML tools are available for Big-Data processing of health informatics such as neural networks techniques that are revolutionizing bioinformatics, medical imaging, public health, and pervasive sensing.183 mHealth, big-data integration and initiatives Big-data and mHealth have a mutual relation, and to get the optimum benefits of mHealth, they need to work as integrated tools.184 As the volume and variation of monitored health data are high, the utilization of mHealth and big-data will make it easier to study, monitor, and understand patientsâ&#x20AC;&#x2122; health status. Data from m-health devices and big-data analysis can empower healthcare institutions, providing a more holistic, patient-centric approach by concentrating on the quality of treatment while balancing pressures on healthcare spending and cost.185 This is based on transforming mHealth data into meaningful information that could benefit clinicians and patients.186 The real power of these data is not just personal insights, but the effect of leveraging the collective knowledge that can be realized through big-data analysis and ML algorithms; the results could lead to intelligent automation within the health

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sector such as automatic disease outbreak identification. mHealth devices can detect and monitor different human bodyâ&#x20AC;&#x2122;s parameters, including vital health signs, and electrocardiography, and recently hypertension and hypotension levels.187 Analyzing these data provide insightful individual health patterns, thus monitoring these parameters to support the delivery of proper and customized care. They can also join in the big-data cluster, including other clinical data; therefore, in emergencies, physicians or emergency response teams can act swiftly. The continuous update of patientsâ&#x20AC;&#x2122; data and regular updates to physicians can also reduce the risk of healthcare errors, improve safety, and avoid improper care. This information can help the individual to give adequate instructions or even medical prescriptions for their conditions. This treatment method is particularly helpful with chronic diseases that need continuous monitoring such as diabetes and asthma. Prescribing medicines and predicting diseases could be more comfortable for doctors with the advent of mHealth Big-Data. This could help to analyze common diseases in an area and help in the surveillance of epidemics and the response and taking necessary precautions at the right time before the disease spreads more. Authorities can detect any emergencies or critical situations and avail the proper care at the

right time. Advances in big-data analytics and applications using ML algorithms are helping to unify fledgling and promising initiatives. These benefits are not confirmed in low-infrastructure environments. In New Zealand, for example, technology uptake is relatively high. Digital and virtual health approaches play an increasingly important role in patient interaction, especially in remote regions.188 Although they are not without challenges, they may increase healthcare service coverage to remote areas at a lower cost. Currently, such schemes are linked to specific initiatives, population groups, or health conditions. For example, MaiHealth provides mobile and virtual medical center in rural Patea.189 In Auckland, mHealth devices support child health in lower socio-economic regions with the iMoko. In iMoko, teacher aides perform basic health assessments, store in the cloud and send to central digital health teams; this team can quickly assess the information, clinician approves treatment plan, and prescriptions are sent to parents or caregivers.190 With this collected information, the pattern of the disease can be extracted and then taught to digital health assessors. It may reduce emergency visits and hospitalizations.

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4.4.1.1

DISCUSSION ABOUT BIG-DATA

Mobile phones/devices are one of the most common tools used by people and their usage in health care has become strategic for healthcare development in low-income and middle-income countries, and they have been used for different purposes, such as patient monitoring, health survey, epidemiological surveillance and public health awareness.191 mHealth in China can be a scenario changer due to the massive government push towards digitizing the country and achieving universal health care (UHC). Therefore, it is believed that Big-Data (figure: Generated mHealth big-data and applying results in healthcare) applied in the health care system can support: • Emergency response services: delivering care and medication at the right time through automatic or manual alerts to authorities from mHealth devices. • Healthcare monitoring: monitoring and analysis of healthcare parameters from the whole community could reveal the conventional medicines that are used; it helps in conducting different surveys and making conclusions directly from these statistics. • Understanding healthcare needs: continuous monitoring of mHealth data in a region will provide authorities the knowledge of common diseases spreading and the diseases most people are suffering from. By understanding such factors, the healthcare authority can implement a system or facil-

ity to treat the people, or they can provide awareness to the people regarding the epidemy. For the healthcare industry, big data can provide several including: • Lower rate of medication errors through patient record analysis, software can flag any inconsistencies between a patient’s health and drug prescriptions, alerting health professionals and patients when there is a potential risk of a medication error. • Facilitating Preventive Care – a high volume of people stepping into emergency rooms are recurring patients also called “frequent flyers.” Big data analysis could identify these people and create preventive plans to keep them from returning. • More Accurate Staffing – big data’s predictive analysis could help hospitals and clinics estimate future admission rates, which helps these facilities allocate the proper staff to deal with patients. This saves money and reduces emergency room wait times when a facility is understaffed.192 Some of the barriers and challenges to healthcare delivery in rural areas can be alleviated by mHealth and big-data analytics. mHealth can motivate health initiatives and policymakers. In conjunction with a model for mHealth, leveraged outcomes such as personalized prescriptions, access to trained medical professionals, and en-

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abled hospitals can hold all that mHealth promises for every global citizen. By utilizing ML from generated Big-Data rather than regret rising health costs and disparities, an investment in mHealth may well be the best long-term economic decision that rising economies.

Additionally, this application could achieve improved healthcare delivery, care audit, epidemiological surveillance, and quick response to epidemics and bring economic benefits to individuals by reducing the cost of care.

Big-data generated from mHealth system

mHealth Applications

Retail Pharmacies

Electronic Medical Records

Public Health Data

Manual Survey Results

Hospitals and Health Providers

Insurance Claim Providers

BIG DATA

mHealth Devices

Genomic Data

Imaging and Lab Results

Generated mHealth big-data and applying results in health care Applying the analyzed results in Health Care Healthcare Big Data types generated Big Data

Big Data Analytics

mHealth Users mHealth Devices Health Providers

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Policy Making

Figure 36 Source: Samaneh Madanian, Dave T Parry, David Airehrour2and Marianne Cherrington. (2019)

Figure 37 Source: Samaneh Madanian, Dave T Parry, David Airehrour2and Marianne Cherrington. (2019)

4.4.2

BLOCKCHAIN TECHNOLOGY TO ENSURE SECURITY OF MEDICAL RECORDS

This chapter on the blockchain was extracted from a document written together with a group within the academic project at the Politecnico di Milano.193 Since the dawn of the Healthcare 4.0 era, healthcare providers have become ever more dependent on smart technologies. Such technologies assist in the management and diagnosis of patient illnesses and help transmit, receive, and collect patient information for health record management. The fitness of data stored on EHR systems plays a critical role in the success of a healthcare provider.194 Therefore, data must always be free of threats and secure at all times. If these conditions are not met, the technologies used may not function correctly or be deemed reliable. With the advent of big data, the size and complexity of healthcare records is increasing and is still not optimized. Records are often duplicated, mismatched using different identifiers/naming conventions, and are made available on different networks and directories of healthcare systems. The security of healthcare records is becoming increasingly important for keeping data safe from security breaches and criminal activity. If unauthorized users can gain access to patient data, it can be sold or leased to the market, with patientsâ&#x20AC;&#x2122; personal information being revealed to anyone with access. This information may include addresses, telephone numbers, full names, etc. The

privacy of patientsâ&#x20AC;&#x2122; data is essential in successful healthcare management.195 In light of these challenges, various countries have proposed or created regulated standards for healthcare systems to prevent cyber threats, which helps improve the confidentiality of patient information and confidence in the provider-patient relationship. At present, most healthcare systems use centralized client-server based architectures, where central authority has full-access to the system. In this scenario, lack of privacy or security flaws may lead to failures in the system, resulting in cyber intruders potentially gaining access to patient data.196 Modern healthcare systems are characterized as being highly complex and costly. However, this can be reduced through improved health record management, utilization of insurance agencies, and blockchain technology. Breakthroughs in blockchain technology have led to improved transactions involving medical records, insurance billing, and smart contracts, enabling permanent access to and security of data, as well as providing a distributed database of transactions. One significant advantage of using blockchain technology in the healthcare is the interoperability of healthcare databases, providing increased access to patient medical records, device tracking, prescription databases, and hospital assets, including the complete life cycle of a device within the blockchain infrastructure.

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Access to patients’ medical histories is essential to correctly prescribe medication, with blockchain being able to dramatically enhance the healthcare services framework.197 4.4.2.1

HOW BLOCKCHAIN WORKS

A blockchain is a digital ledger, a public, secure registry of transactions. The “block” describes how it organizes the data, separated into blocks that, in turn, are organized in a “chain” that links all the blocks of data. By design, the blockchain is inherently resistant to modification of the data. It is an “open, distributed ledger that can record transactions between two parties efficiently and in a verifiable and permanent way.” Blockchain is typically a peer-to-peer network, and, once written, it is not possible to alter data without the modification of all subsequent blocks, which requires a consensus, that it is not easy to build. The blocks Each block in the chain contains its hash, a reference to the previous block in the chain, and some additional data that makes up the content of the block. The data of the block is the actual information that needs to be recorded. For instance, in the Bitcoins case, it is the details of the transaction made.

The hash The hash can be compared to a fingerprint, it identifies the block and its contents, and it is always unique. Changing something inside the block changes the hash itself. The hash of the previous block is what makes the chain, linking all the blocks together; this is what makes a blockchain secure. In a block, it is possible to read all the previous blocks the most updated, until the first one on the chain, the genesis block. Proof-of-work If the data of any block is tampered with, its hash will change, breaking the chain and making all the following blocks invalid. As a consequence, all the next hashes need to be recalculated, which is a complicated process. In order to mitigate this situation, blockchains have something that is called proof-of-work, a mechanism that slows down the creation of new blocks. This mechanism makes it very hard to tamper with the blocks because all the blocks and its proof-of-work would need to be recalculated.

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Block components

Data

Hash of Previous block Hash

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Figure 38 Source: Nicola Coco, Federico De Luca, Jiang Yunxiu, Öykü Kosma, Claudia Nicoletta, Miguel Marcelo Ramirez Maciel, Xiaowen Yu. (2018)

How Blockchain works

3 This is a blockchain: each block contains 3 parts: Data, Hash, Hash of previous block.

2 And blockchain uses ‘Peer-to-Peer’ network, Everyone is a ‘Node’ of this network and has a copy of whole blockchain.

When someone creates a new block, he needs to calculate the ‘Proof of work’. Then the block will be sent to every node.

5 The new block is then added to the exsiting blockchain, in a way that is Permanent and Unalterable.

Each node Validates the new block, and creats a Consenus together.

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Figure 39 Source: Nicola Coco, Federico De Luca, Jiang Yunxiu, Öykü Kosma, Claudia Nicoletta, Miguel Marcelo Ramirez Maciel, Xiaowen Yu. (2018)

Consensus Another security measure is using a distributed network instead of a central agency to manage the chain. Blockchain uses a peer-to-peer network; when someone joins the network, they get a full copy of the blockchain, they are called distributed nodes. New nodes can come and go, synchronizing their copies each time they join. The fact that there are multiples copies of the chain is one of its most powerful features. It makes it more resilient and harder to disrupt. When the chain receives a new block, the new information belongs to a node. Each node then verifies the block to check that it has not tampered with and, if everything is valid, this new block becomes a new part of the blockchain. All the nodes need to agree on what blocks are valid and which are not, creating consensus. Other nodes in the networks will reject tempered blocks. To successfully tamper with a block, it necessary to tamper all the blocks in the chain, redo the proof of work and take control of more than 50% of the nodes in the chain, something that is almost impossible to do. Adding a node in the chain Every node can add blocks to the chain. They may include any transaction they want to form a tree of transactions later hashed into the Merkle root and referenced into the blockâ&#x20AC;&#x2122;s header. It is to note that

for a block to be accepted by the network, it needs to contain only valid transactions such as inputs that are not yet spent, inputs with the correct amount, signature that verifies and other validations. The other test for a valid block is where its nonce comes in (In cryptography, a nonce is an arbitrary number that can only be used once). To be a valid block, the hash of the header block always has to start with a certain number of zeros. It means that nodes have to do much calculation in order to create a new block. So it is also tough to compute what once will result in the header of the new block has a hash that starts with lots of zeros. The current probability of managing to get a nonce that works per attempt is about 1 in a sextillion. The growth of the blockchain The difficulty of creating a new block is automatically regulated such that no matter how big the network of nodes gets, and no matter how much computing power they have, it will always take about 10 minutes for the whole network to find a new block. The total computes power of the network is a limit to the growth of a blockchain and the number of possible transactions. In other words, as the network grows, the total energy consumed grows, but the output stays the same. For example, the total power consumed by the Bitcoin network is about the entire consumption of Ireland.

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4.4.2.2

BLOCKCHAIN IN HEALTHCARE

One of the significant benefits of Blockchain in different areas is the creation of trust; there are three critical elements needed to establish trust: 1) identity, or who is who. 2) ownership, or who owns what. 3) verification, or what is true. Blockchains allow users to prove their identities easily, protect ownership of digital assets, and verify transactions without a high-cost intermediary. With enhanced data management with Blockchainâ&#x20AC;&#x2122;s help, it is possible to record the full medical history of a patient and reach the data efficiently and accurately. Consequently, the quality of the healthcare system will rise; it would become more practical and cost-efficient. Given the permission, this information recorded can be shared with third parties such as medical researches or universities to use in their studies. Otherwise, if the information would be kept private, only allowing the reach of its owner. Health Care Rallies of IBM made a research about the implementation of the Blockchain in the healthcare industry, and they have realized 16 percent of the 200 healthcare executives from 16 countries are beyond the texting level and moved forward to having a commercial solution with it. Authorities recognize that Blockchain is revolutionary for healthcare in terms of time, cost, and efficiency.

Besides, with the help of data tracking, it is possible to track the background of medicines, how they are produced, stored, and traveled, and build trust in the medical industry. As an example, MedRec, one prototype using blockchains, aims to give patients and their providers one-stop access to their entire medical history across all providers they have ever seen. According to MedRec, patients prefer to grant access to their medical records to researchers, anonymously, to be used in research, which could make medical breakthroughs possible faster than they are now. This pioneer in the field shows the potential for how dramatically things could change in healthcare by deploying blockchains.198 As the blockchain ecosystem evolves and different use cases emerge, organizations in all industry sectors will face a complex and potentially controversial array of issues and new dependencies.

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4.4.2.3

CASE STUDY: E-STONIAâ&#x20AC;&#x2122;S X-ROAD

As seen in chapter 4.2, X-Road is a communications system that supports institution-to-institutional information sharing and enables a range of use cases. The 21st-century keywords citizen-centered state and service-oriented information system require information systems to function as an integrated whole to support citizens and organizations. Estoniaâ&#x20AC;&#x2122;s e-solution for maintaining a modern State is X-Road, which saves Estonians 800 years of working time every year. X-Road, the data exchange layer for information systems, is a technological and organizational environment enabling secure Internet-based data exchange between information systems. First launched in 2000, will soon support the transmission of data between some Estonia and Finlandbased entities. X-Road employs a versatile security solution: authentication, multilevel

authorization, a high-level log processing system, encrypted and time-stamped data traffic. Public and private sector enterprises and institutions can connect their information system with X-Road. Joining the X-Road enables institutions to save resources since a cooperative and secure data exchange layer already exists with all the other X-Road members. Data exchange between all the members of the X-Road ecosystem is significantly efficient. Indirectly, X-Road enables citizens and officials to operate via different portals and applications (document management systems, institutional information systems) more efficiently and flexibly. For example, it helps to check for relevant information in national databases or securely exchange documents with institutions. According to the e-Estonia website, X-Road has already been implemented in Finland, Azerbaijan, Namibia, and the Faroe Islands.

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4.4.2.4

CONSIDERATIONS ON BLOCKCHAIN

Blockchain technology presents numerous opportunities for health care; however, it is not fully mature today nor a panacea that can be immediately applied. Several technical, organizational, and behavioral economics challenges must be addressed before a health care blockchain can be adopted by organizations nationwide. Adoption and incentives for participation Two levels of incentives are necessary for blockchain to succeed. On a technical level, a network of interconnected computers (nodes) must be present to supply the computing power necessary to create blocks once a transaction is submitted. In addition to incentives for blockchain to work technically, further support may be needed to encourage organizations to adopt the technology and participate in a shared network. Data standardization and scope In addition to evaluating blockchains, organizations should consider what information is stored on or off the blockchain. For health care information stored on the blockchain, the most immediate concern is the size of information stored on the blockchain. A free-form submission of data to the blockchain, such as doctor notes, could create unnecessarily large transaction sizes that could adversely impact the performance of the blockchain. Nevertheless, the blockchain can still be efficiently operable with a specific and confined set of data,

such as demographic information, medical history, and codes for services rendered. To standardize data stored on the blockchain and to manage performance, organizations should align on a framework for defining what data, size, and format can be submitted. Scalability constraints: tradeoffs between transaction volumes and available computing power The Blockchain Framework suggests that organizations can roll out permissionless or permissioned implementations of blockchain technology. Permissionless blockchains are appealing, because they enable broader access, allow for open-innovation, and tap higher computing power across the network. Regulatory considerations Health care policymakers should consider deep collaboration with industry to understand and facilitate the growth of the ecosystem within the bounds of the existing regulatory framework and new administration policy objectives. Costs of operating blockchain technology While blockchain technology enables faster and near-real-time transactions, operating such a system is not yet known. Health and government organizations spend a significant amount of time and money, setting up and managing traditional information

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systems and data exchanges. They require resources to continuously troubleshoot issues, update field parameters, perform backup and recovery measures, and extract information for reporting purposes. Blockchain’s open-source technology, properties, and distributed nature can help reduce the cost of these operations.199 Blockchain Security/Privacy Transactions are globally published and are not encrypted in most applications. If this data is personal data, for example, “medical

or financial data,” this leads to regulatory and legal problems. One solution is to store only encrypted data in the blockchain, which leads to another problem: If the key to decrypt specific information is lost, the data may not be recovered accurately. Furthermore, if a key is stolen and published, all the data is forever decrypted in the blockchain since the data cannot be altered. However, blockchain can also help to improve defensive cybersecurity strategies, especially in terms of identity and access.

Potential and Limits of Blockchain Shared Economy

High Energy

Smart Contracts

Eliminating 3rd Parties

Protection of Intellectual Property

Polarization of Mining Power

Lack of Regulation

Limited Network Data Storge

Complexity

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Figure 40 Source: Nicola Coco, Federico De Luca, Jiang Yunxiu, Öykü Kosma, Claudia Nicoletta, Miguel Marcelo Ramirez Maciel, Xiaowen Yu. (2018)

4.4.3

ARTIFICIAL INTELLIGENCE AND MACHINE LEARNING FOR EARLY DIAGNOSIS

Artificial intelligence (AI) is more than just a digital transformation trend in healthcare. AI represents the epitome of medical innovation, and industry players are eager to invest millions in it. The healthcare AI-powered tools market is expected to exceed $34 billion by 2025, which means this technology will shape almost all facets of the industry.200 Chatbots and virtual health assistants are another AI-based technology that patients are becoming familiar with. Chatbots can fill a multitude of roles, from customer service representatives to diagnostic tools and even therapists. Their versatility is being translated into substantial investments. The global healthcare chatbots market is projected to reach $314.3 million by 2023 from $122 million in 2018. However, the real power of AI can be best observed in areas like precision medicine, medical imaging, drug discovery, and genomics. For instance, cancer patients used to receive cookie-cutter treatments with high failure rates. Now, thanks to AIâ&#x20AC;&#x2122;s sophisticated pattern recognition, these patients have access to personalized therapies tailored to their genetic makeup and lifestyle. What AI-powered computer programs do for oncology, in a nutshell, is to analyze thousands of pathology images of various cancers to provide highly accurate diagnoses and predict the best possible anti-cancer drug combinations. Moreover, in medical

imaging diagnostics, this technology helps radiologists spot details that escape the human eye. Moreover, top pharmaceutical and biotechnology companies are using machine learning algorithms to shorten the drug development cycle. Recent findings show that AI can slash early drug discovery timelines by four years against the industry average, and generate cost savings of 60 percent.201 AI technologies can be used in the diagnostics, but they also help identify the problem before it shows. For example, a tech giant Cognizant used machine learning and data analytics to elaborate preventive care practices. Through the use of advanced algorithms, the company was able to identify the early signs of emerging drug addiction among high-risk patients by analyzing their health records, physicianâ&#x20AC;&#x2122;s notes, and behavioral patterns.202 Another trend of the digital transformation in healthcare is companies collecting their health data from medical devices, including wearable technology. In the past, most patients were satisfied with undergoing a physical once a year and only checking in with their doctors when something went

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4.4.4

THE GROWTH OF WEARABLE MEDICAL DEVICES

Another trend of the digital transformation in healthcare is companies collecting their health data from medical devices, including wearable technology. In the past, most patients were satisfied with undergoing a physical once a year and only checking in with their doctors when something went wrong. Nevertheless, in the digital age, patients focus on prevention and maintenance and demand information about their health more frequently.203 As a result, healthcare companies are being proactive by investing in wearable technology devices that can provide up-to-date monitoring of high-risk patients to determine the likelihood of a significant health event. Wearable technology in healthcare includes electronic devices that consumers can wear, like smartwatches, and are designed to collect the data of users’ health and exercise. The advancement of wearable technology and growing demand from consumers to take control of their health has influenced the medical industry, including insurers, providers, and technology companies, to develop wearable devices, smartwatches, and wearable monitors. The wearable market has significantly grown in recent years and became one of the central emerging technologies in health care 2020. Today, there is a great variety of

wearable devices from affordable connected inhalers to tracking systems for patients used in hospitals. Information from wearable health devices incorporates valuable data about patient health behaviors. It includes heart rate, calorie burn, physical activity, and sleep patterns. All those different things will integrate into decision-making for patient’s health.204 Some of the most common of these devices include: • Heart rate sensors • Exercise trackers • Sweat meters – used for people with diabetes to monitor blood sugar levels. • Oximeters – monitors the amount of oxygen carried in the blood, and is often used by patients with respiratory illnesses such as COPD or asthma.205 One of such wearable devices is a medical-grade Biosensor BX100 by Philips that helps remotely track patient vitals, including respiratory and heartbeat rate, collect and analyze condition data, detect the risks of deterioration and notify doctors and caregivers in time. Wearables are not the only important tracking technology that improved healthcare monitoring practices. In fact, in increasing patient flow, large connected systems for patient monitoring

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in hospitals play even a more critical role as they allow significantly unloading staff and enable continuous remote monitoring of patients from one central hub.206 Other benefits for healthcare companies who invest in these products: • Personalizes the healthcare experience – medical devices give patients a sense of ownership in improving their health. • Target’s insurance pricing – information obtained from wearable devices can help insurers rate a patient’s risk of illness more accurately. • Provides insurance incentives – patients who take preventive measures to improve their health can obtain lower insurance premiums. • Provides gamification opportunities – some medical devices such as fitness watches can create competitive goals for users to achieve through exercise, diet, and nutrition.207

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Figure 41 Smartwatch Source: https://bit. ly/2Cebw7U (2020)

4.5

DIGITAL TRANSFORMATION IN CHINA

In China’s diverse and rapidly changing landscape, the capacity for innovation is primarily responsible for digital transformation (DT). “Digital transformation is the integration of digital technology into all areas of a business, fundamentally changing how you operate and deliver value to customers.”208 In recent years, technological innovators such as Baidu, Alibaba, Tencent, Didi Chuxing, ByteDance (TikTok or Toutiao), RED, and Meituan Dianping have accelerated the digital transformation. Their stories have served as inspiration for new transformers to compete and prosper more effectively. Compared with the rest of the world, China’s digital transformation trends focus on the customer experience (CX) and the modernization of touchpoints in the digital customer journey. However, the way China is dealing with digital transformation differs from the rest of the world.209 The digital transformation in China is becoming a way to differentiate, increase revenue, improve customer experience, and gain new customers. For instance, Chinese companies are focusing on digital transformation, in particular on CX, digital marketing, and e-commerce initiatives. Compared to the rest of the world, the Chinese’s DT is significantly higher. Digital transformation is a competitive advantage to serve consumers in a rapidly changing environment. Every sector must evolve to survive.

For example, retail is evolving as “new retail,” automotive is emphasizing electrical and autonomous solutions, fintech drives finance, and manufacturing is composed of IoT, robotics, and IA-based solutions, etcetera. In digital transformation, customers are number one, Chinese innovators such as Baidu, Alibaba, Tencent, Didi Chuxing are well aware of this and have increased consumer expectations. Just as Uber, Airbnb, and Amazon have done in the USA, influencing their respective markets. As a result, consumers who interact with a brand and a company expect fluidity, real-time, customization, and full integration of touchpoints and cross-cutting interactions. Companies need to capture new opportunities understanding the customer’s journey, where there is fragmentation, and where innovation is needed.210 From an analysis of Prophet (2019) on Digital Transformation in China,211 74% of Chinese companies surveyed are in the process of (28%) or have completed (46%) the mapping of the customer’s journey, compared to 32 and 27% respectively.

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Figure 42 Source: Brian Solis. (2019)

The state of Digital Transformation in China versus the rest of the world

46%

Companies have mapped out the customer journey and have used the data to define and prioritize their digital transformation roadmap

32%

28%

Companies are researching customer behavior now and waiting for results to inform their digital transformation strategy

27%

12%

Companies are actively studying mobile customer journey and/or designing relevant customer experience

27%

The need to study customer journey hasnâ&#x20AC;&#x2122;t been made a priority

Companies have not officially researched the digital customer journey, but they have updated digital touch points with modern technologies

7% 0

0,125

China

0,25

0,375

0,5

Rest of World

The best digital transformation initiatives in China appear in Chinese companiesâ&#x20AC;&#x2122; long-term priorities. CX and customer data strategy dominate the agenda, with the majority of integrated customer contact points to provide integrated, frictionless, all-channel CX. At the same time, the majority of companies are investing in IT infrastructure and technology to manage

data and cross-functional efficiencies better. In terms of internal organization and transformation, this is not a priority for many Chinese companies.

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4.5.1

MARKET AND CLASSIFICATION OF HEALTH APPLICATIONS IN CHINA

The Chinese mobile healthcare market (mHealth) is one of the global leaders in terms of industry size and has some features that set it apart from other applications markets. The main mHealth initiatives addressed by the apps follow the demand for access to healthcare for Chinese patients. There are already many apps that are specific to chronic diseases, prevalently in the territory. â&#x20AC;&#x153;mHealth, an area of eHealth, is the provision of health services and information through mobile technologies such as mobile phones. These applications have the potential to cut costs, promote patient engagement, and improve health outcomesâ&#x20AC;?.212 Despite structural differences in the healthcare system, many mHealth

applications in China refer to those used in more developed countries. The healthcare industry in China is a fast-growing sector, only between 2014 and 2015 it grew from 29% to 49% annually. Only the WeDoctor (Tencent) application, which offers medical consulting and prescription services, has already reached the $5.5 billion ratings.213 In China, patients often have difficulty getting access to proper medical care. mHealth has the potential to provide broadly accessible services that can be individually tailored and quickly adopted.

China Internet users growth 0,62

61,2%

900

59,6% 854 0,59

57,7% 55,8%

0,56

54,3% 53,2% 0,53

51,7%

850

829

802

800

772

751

750

731

710 0,5

Jun 2016

Dec 2016

Jun 2017

Penetration rate

Dec 2017

Jun 2018

Dec 2018

Number of users (million)

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Jun 2019

700

Figure 43 Source: Alan Weissberger. (2019)

China has a little more than 1.6 billion mobile subscribers as of year-end 2019. That is exceptional, considering Chinaâ&#x20AC;&#x2122;s 2019 population is around 1,5 billion people according to 2019 UN data.214 Internet users in China in urban areas account for 73.7% of total Internet users, 541 million people do not access the Internet, 62.8% of whom live in rural areas. The number of internet users on mobile phones is 847 million, which is more than 99% of internet users in China. Smartphones have become the first Internet access devices in China.215 The most used apps respond to two central operating systems: Android (Google, Mountain View, CA, USA) and iOS (Apple Inc, Cupertino, CA, USA). For Android, the largest app stores in China are operated by Tencent (Tencent Holdings Limited, Shenzhen, China), Baidu (Baidu, Inc, Beijing, China) and 360 (Qihoo 360 Technology Co. Ltd, Beijing, China).216 The three stores account for almost 80% of Androidâ&#x20AC;&#x2122;s Chinese market share.217 According to a study by the Journal of Medical Internet Research218 about the Chinese mHealth market, the classification of applications mainly comprises ten categories: (1) appointments, (2) reminders, (3) telemedicine, (4) patient documentation and monitoring, (5) pharmacy, (6) disease awareness, (7) clinical decision support, (8) discussion forums, (9) medical education

and scientific articles and (10) other. Each application may have one or more identified mHealth factors. The most common medical services offered in apps are telemedicine, disease awareness, appointment making, patient registration, and monitoring (Figure 2). The least used service factors are reminders and clinical decision support. Other services include information and drug delivery, insurance plans, and online and offline health monitoring services. Generally, the target of the apps are patients, the few apps that deal with clinical decision making and medical education include health professionals. Applications focus on health professionals (HCPs), non-HCPs (patients), or both. From an analysis made by the Journal of Medical Internet Research219 on a sample of 234 apps, 185 are targeted at nonHCPs, while 34 at HCPs and 15 had both versions available. A total of 210 (89.7%) of mHealth apps in China were free. All paid apps came from the iOS app store. Nearly one-third (154/234, 65.8%) of the apps had both a mobile and a web-based version. 227 of the 234 apps (97.0%) did not mention information security (Figure 3). From the information security side, China lacks an industry-standard or legislation regarding medical information safety or privacy.

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Figure 44 Source: Jeffrey Hsu, Di Liu, Ya Min Yu, Hui Tong Zhao, Zhi Rou Chen, Jiao Li, Wei Chen. (2016)

Distribution of Chinese mHealth apps according to medical initiative and user type. HCP Appointment making Reminders Telemedicine Record Pharmacy Awareness Clinical decision support Discussion forum Scholarly articles + Medical education Other 0

22,5

Both

67,5

HCP

nonHCP

Features of the Chinese mHealth app landscape Chinese mHealth appsâ&#x20AC;&#x2122; target users

185

150

Both

225

HCPs

300

Non-HCPs

10%

34% Web App

Payment

Security

66% 90% Paid

97% Free

Yes

None

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Yes

Figure 45 Left: distribution of paid and free apps; Middle: portion of apps with and without a Web-based version; Right: portion of apps with medical information security measures. Source: Jeffrey Hsu, Di Liu, Ya Min Yu, Hui Tong Zhao, Zhi Rou Chen, Jiao Li, Wei Chen. (2016)

The examination of applications for chronic diseases reveals that the most common diseases are diabetes, hypertension, liver disease, and infertility (Figure 4, top). For diabetes, the apps mainly serve as a registry and patient awareness-raising function.

The most common specialty apps deal with general medicine, obstetrics and gynecology, endocrinology, pharmacology, and traditional Chinese medicine (Figure 4, bottom).220

Heat map of medical initiative targeted by applications from (top) each disease and (bottom) medical specialty.

Figure 46 Note: white numbers refer to the count of apps within each specialty. Warmer colors refer to higher count. *Medical education includes dissemination of scholarly articles. OBGYN: obstetrics and gynecology; TCM: traditional Chinese medicine. Source: Alan Weissberger. (2019)

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mHealth Initiatives â&#x20AC;&#x153;Telemedicine generally is defined as the use of telecommunications technology to provide medical information and services.â&#x20AC;? (source?) However, the service provided in telemedicine has limited medical actions. Apps that allow patients to book medical appointments solve the problem of difficult access to hospitals by aggregating the availability of hospital appointments on their platform, avoiding long waits for patients in fully booked hospitals, or working with individual doctors to provide personal leisure consultations.221 The most significant offer of health apps concerns general medicine. In this context, apps focus primarily on appointment booking and telemedicine. The telemedicine services offered are often a more concise version of the medical history, as patients are given general answers and are then encouraged to seek specific guidance through in-app appointments. Therefore, despite lexical differences, the Chinese mHealth applications that provide telemedicine services perform similar functions to appointment booking. This finding reinforces the difficulty of access to care and patientsâ&#x20AC;&#x2122; lack of possession of their health data.222

Pharmacology apps aim to facilitate access for patients with reduced mobility who need to refill medication and cannot go to pharmacies or community hospitals. Community pharmacies often do not have a complete repertoire of prescription drugs, and the current state insurance policy covers prescriptions in hospitals for 14 days for non-disabled patients and up to 30 days for disabled patients. From the top end of healthcare professionals, pharmacology applications aimed at physicians, pharmacists, and other practitioners have provided references for dosage, interactions, and alternative medicines, improving processes.223 Access to an application from different media may allow users to experience the application in a different way and may serve different purposes. The analysis carried out considered apps on mobile phones. However, about one third of the apps on the market also have a web-based version. The main difference between the web app and the mobile app was the ability for users to view historical data organized in reports or graphs in the web-based version. It was reported that data visualization and context awareness could improve the usefulness of an app.224

Another popular area for the mHealth is pharmacology and provides patients with access to online or offline pharmacies and doctors with prescription drug references.

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4.5.2

TENCENT FOR EHR INTEROPERABILITY IN CHINA

In recent years, Chinese citizens have asked the government to digitize their medical booklet and make it available to patients. Now, access to the patient booklet is only available to doctors, and only some facilities have a similar computer system to make the data interoperable. In order to promote greater standardization among different healthcare facilities, the government has promoted the Hospital Alliances, in which hospitals of different categories operate among themselves, adopting a similar Health Information System and making patient data interoperable as well. However, to date, patient data and their medical records are not accessible by patients in digital format. Over the last few years, many network users have complained about this situation and wondered why this is not possible, given the high digitization of Chinese services for the public sector.225 Some hospitals in large cities have an official account on WeChat, and allow patients to connect through the platform, validate them with the health card to get access to their medical records.226 However, each hospital has different rules; these data are not combined and analyzed together but organized per hospital, and the access to it is temporized differently per hospital. Some hospitals instead have started to digitize the first paper-based process of delivering clinical records, through a code delivered to the hospital on demand.

Tencent, a joint-stock investment company in the IT sector, has given the willingness to open WeChat API channels to hospitals that request them in collaboration with the government. For example, through a partnership with Fudan University Shanghai Cancer Hospital, users can pay hospital bills, check diagnostics reports, and check personal health records via WeChatâ&#x20AC;&#x2122;s Public Services function.227 This solution creates an integrated healthcare experience for patients. WeChat already has an extensive database and is the most widely used application by the Chinese, used for messaging, payments, and identification. Tencent offered the willingness to make patient data interoperable in two ways: ensuring the security of usersâ&#x20AC;&#x2122; EHR data on the application and allowing them to integrate the hospitalâ&#x20AC;&#x2122;s EHR management information system to professional medical devices to detect and braid some data.228 To achieve this, the government must establish rules and collaboration between hospitals, medical associations, and laboratories. The advantages of the implementation are enormous: Tencent will have more active users on its services, the hospital will be able to guarantee citizens a better health organization of clinical data, the government will achieve standardization in the organization of digital user data, for research, study, data analysis over time. Be-

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sides, hospitals will change the way to manage traditional clinical activity, saving time, costs, the efficiency of care, improving prevention, and increasing user satisfaction. Citizens use WeChat assiduously;229 this integrated service will allow them to improve their healthcare experience without learning how to interact with another service. Personal EHR will reach the peak of efficiency when citizens have access to their data from birth (and even during pregnancy). It is essential to plan training in reading oneâ&#x20AC;&#x2122;s clinical data from the patient side and use clinical data entry platforms for medical staff. Otherwise, this type of innovation is not optimized. Further benefits of this

service-system concern the treatment of chronic diseases that require the consultation of different services not always provided in the same location. This condition requires patients to move to different areas, as hospitals do not always make the data interoperable. This service would allow the patient not to move around and have their health data, reports, and analyses on their platform. In some situations, patients cannot follow treatment, especially when they are required to go to the hospital. In some cases, this service will allow the patient to stay at home, receive the therapy, and follow it from home.230 Below is a description of the functionality of the two most popular Tencent health care applications in China.

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4.5.2.1

WECHAT

“Nowadays, social media tools such as short message service, video, and web-based systems are used in clinical follow-up, making clinical follow-up much time and cost-effective. However, as the most popular social media in China, little is known about the utility of smartphone WeChat application in the follow-up.”231 The booming of information technology has brought up a great diversity of methods of medical consultation. Much evidence shows that the rapidly developing eHealth has a great impact on medical practice.232,233 Besides, more and more investigators believe that big data tools and technologies have the potential to create significant value for health care.234 As smartphones have a wide usage in people’s life, mobile health applications (apps) such as “Apple Health” is changing our way of medical consultation. Therefore, these apps might have the potential to improve the follow-up strategy of head and neck cancer patients. In recent years, WeChat, a social media app, has become the most popular of its kind in China. According to Xinhua, the number of WeChat users reached over 1.17 billion in January 2020.235 A study conducted by Yang et al.236 have applied WeChat in providing guidance for pediatric intestinal colostomy. There are other researchers focusing on applying WeChat in library service, financial service, and other fields. However, to our knowl-

edge, evidence of WeChat implemented for follow-up is limited at present. Another study on Smartphone Application WeChat for Clinical Follow-up demonstrated that the smartphone WeChat application could be a wonderful assistant to follow-up due to its better convenience, less time and money consumption, and higher degree of satisfaction than those of telephone follow-up (TFU).237 In general, patients who have gone through therapeutic approach are more likely to consult with the doctor, and hence it will be greatly helpful to set up a continuous communication platform for discharged patients.238 Patients in WeChat follow-up (WFU) group, compared with patients in TFU group, kept closer contact with their doctors and gave more feedback information to their doctors during the follow-up. This indicates that WeChat might have the potential to enhance the doctor-patient communication and thus help rebuild physician-patient relationship in China.239

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4.5.2.2

WEDOCTOR

WeDoctor is a mobile application aspiring to make healthcare more approachable and accessible for the average individual. This company has been recognized for introducing “China’s first internet-based hospital,” and its platform has been used by over 2,700 hospitals in mainland China and has 27 million monthly active users since its founding in 2010. There is massive potential to scale this platform both domestically with healthcare spending projected to reach $1 trillion by 2020, and internationally.240 WeDoctor has enormous potential, given how big China’s healthcare market is. According to some estimates, China’s health sector is expected to be worth USD 2.3 trillion (RMB16 trillion) by 2030. Just in 2020, it will value USD 1 trillion. WeDoctor offers much value to its customers’ sector through several vital services. In the beginning, WeDoctor started as an online platform for customers to make offline consultation appointments with doctors, saving time. Today it remains an offline booking site, with the company expanding its offerings to include online follow-up consultations. In China, cities along the country’s east coast often have the best doctors, making their services inaccessible for millions of Chinese. Through internet consultations, WeDoctor can help bridge this healthcare gap. The company also helps patients get their prescriptions easier.

WeDoctor offers insurance for a variety of conditions, such as cancer and leukemia.241 WeDoctor has a cloud division that cooperates with hospitals, governments, and clinics to provide tools such as record management, data processing, AI diagnosis, and pension management. This cloud division has access to data WeDoctor could use to train its AI algorithms better. The company hopes to use artificial intelligence to help doctors improve both medical accuracy and efficiency. Studies have shown that collecting data in real-time and then cross-referencing that data with a patient’s medical history and the medical history of millions of other users, could help predict medical events like a heart attack. If this technology is utilized, it could save lives. It could also save insurance companies much money.242 While WeDoctor has many capabilities, it has four main businesses: 1. WeDoctor Healthcare composes of two disease diagnoses system for Western (RealDo ctor) and Chinese medicine (Huatuo AI Doctor), both of which are facilitated by artificial intelligence (AI). The latter offer is reflective of the continuing reliance on traditional medicine in Chinese society. One of its more notable capabilities in detecting cervical cancer.

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2. WeDoctor Insurance offers users various insurance options based on gender and concerns (cancer insurance, leukemia insurance, children’s insurance) at different price points. 3. WeDoctor Cloud allows its partnering hospitals, clinics, government, and businesses to use tools such as data processing, record management, AI diagnosis, pension management, and remote consultation. 4. WeDoctor Pharma integrates its healthcare services to provide patients a “one-stop-shop” to receive a virtual consultation and receive an electronic prescription that can be immediately filled.

WeDoctor’s success can be attributed to how it addresses the traditional pain points related to healthcare: time, distance, and money. Its value also arises by helping doctors make earlier or more precise diagnosis, and by speeding up the overall experience. Collecting data in real-time and cross-referencing a patient history with millions of other users can, for instance, predict a heart attack “with a high rate of precision.” WeDoctor can become especially valuable for rural populations who often experience increased difficulty reaching critical health services. In many ways, WeDoctor redefines the notion of personal care that has been at the core of the patient-doctor relationship. As the platform continues to grow, its treasure trove of data proliferates and be valuable to many interest groups.243

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4.6

CONCLUSIONS

As seen in this chapter, the digitization of healthcare is already a reality in continuous implementation. The healthcare digitization process improves not only diagnostics and medical operations but also the perception of performance quality and confidence levels in the lower hospital classes. The complexity of the system requires better cooperation between stakeholders and processes. Also, it requires targeted policy planning to improve the application and development of technologies when it comes to patient data. The case studies have traced an optimized model of data organization, privacy management, and interaction between stakeholders at a systemic level. Through this information, it is possible to design a service system that follows an existing model and is optimized for the Chinese context. In this sense, China has promoted cooperation with IT providers to develop user data management platforms with hospitals. However, the use of these new features is not optimized as the system continues to be hospital-centered and not patient-centered for data security, sharing, and lack of standardization between systems. The research in this chapter translates into an opportunity to design a user-centered service-system that takes advantage of technological innovations for security and optimizes data use. The project intervention does not aim to redesign the system from scratch but improve interactions, functionalities, and data management on existing systems such as those already examined (see WeChat). EHR is a complex multi-annual project involving several partners. In order to implement this system, it is crucial to follow inter-linked activities identifies as: Creation of an adequate legislative framework and extensive discussion of medical ethics issues in advance of the implementation of new public services. The objectives and means of EHR should be accepted by society;

â&#x20AC;˘

Creation of an organizational infrastructure to manage the project and to operate EHR in the future;

â&#x20AC;˘

Development of information technology (IT) processes and services, and implementation of quality management in partner organizations are essential activities of EHR;

â&#x20AC;˘

Since the EHR project establish new digital services, elaboration of data-models, description, standardization, and medical data classiwas also necessary; a system architecture, data exchange, and access requirements needed to be elaborated and relevant software programmed;

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Keywords: #data #security #service #technology #digitization #channels

•

Activities enabling the implementation of IT infrastructure (equipment procurement and installation, integration of users, set up of databases, etcetera);

•

Due to the novelty and technical complexity of EHR, ongoing training of users (medical staff, pharmacists, etcetera.) and informing the partnership and society was a significant part of the project action plan.

•

The project must take into account the security of patient data. Through the Blockchain analysis, it was possible to trace the existing use of technologies that guarantee the safety, traceability, and transparency of data.

•

The use of big data in the design of systems for EHR facilitates emergency response healthcare monitoring, analyzing healthcare parameters from the whole community could help understand healthcare needs and provide authorities knowledge. Besides, Big data’s predictive analysis could help hospitals and clinics estimate future admission rates enabling Preventive Care.

•

The healthcare app market analysis in China has shown that some players have shown interest in the development of EHR systems. However, hos-

pitals remain the focus for the development of these systems, penalizing users. The design for the implementation of these systems makes it possible to optimize these existing channels, their IT infrastructure, and the catchment area already achieved in favor of an efficient and user-centered integrative EHR system. •

The next chapter’s core is the role of service design in the implementation of strategies and tools for the systemic design of this typology of services.

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CHAPTER 5 5

SERVICE DESIGN AND IMPLEMENTATION

This chapter defines service design and the role of the service designer within design processes, particularly in healthcare. Through the description of a case study on the design of EHR systems in Portugal by service designers, it is possible to understand the design strategies and tools that lead to the implementation of these

5.1

service systems. The analysis of this case study is essential because compared to the case studies mentioned above, it describes the design choices and directions taken from within during the design phase. The conclusions of this chapter outline the design guidelines for the concept generation phases.

Brief introduction to the contents of this chapter. #Service Design #Health care #EHR #Visual Tools #UX #UI

SERVICE DESIGN DEFINITION

To understand the service designer’s role in this research context, it is necessary a definition. Service design implies the design of services and a thinking attitude to work with the application of diverse methodologies and tools. Since concepts and keywords usually associated with service design are different, such as human-centered design, user experience, interaction design, business, and communication, defining them wholly and singularly is challenging. Although it is composed of many different methodologies and approaches, service design is increasingly a debated discipline. “Service design adopts the mindset and work of the design process, combining an active, iterative approach with a flexible and relatively light-weight set of tools borrowed from marketing, branding, user experience, and elsewhere. It is its patchwork background that makes service design powerful. As a design discipline, it is focused on solving the right problem – by framing the

problem or opportunity in the right way. So, service design usually starts by investigating the needs of the user or customer. It is inquiring and inquisitive, using a range of mostly qualitative research methods to explore the “how and why” of the opportunity space. Understanding needs, instead of jumping straight to a “solution,” make real innovation possible”.244 Because technological innovation affects service experiences differently, service designers must leverage technology and orchestrate complex service systems to make innovative services while enabling a seamless experience for customers. Service design relies on contributions from a ramification of fields, including management, information technology, and interaction design. There are three challenges for service design within the planning of technology-enabled services. First, although technology

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Service design adopts the mindset and work of the design process, combining an active, iterative approach with a flexible and relatively lightweight set of tools borrowed from marketing, branding, user experience, and elsewhere.

has great potential, it must be used appropriately to support service innovation and to enable endless customer experience. Secondly, to push the orchestration of technology-enabled services, the multidisciplinary service design contributions need to be further integrated. Finally, the blending of multiple perspectives on service design will advance service research as an interdisciplinary field. Precisely thanks to its multidisciplinary nature, “Service design involves understanding customers and repair providers, their context and social

5.2

practices, and translating this understanding into the event of evidence and repair systems interaction”245,246 Interaction design has made significant contributions to addressing technology challenges in service design.247 Both interaction design and service design share a design thinking approach, where the holistic understanding of underconstrained problems is favored.248

SERVICE DESIGN FOR HEALTH CARE

Inclusivity in healthcare and digital transformation are connected from each other. Health care organizations can’t hope to change the patient experience and generate better outcomes for underserved groups without transforming their system functions. However, it is essential to understand that digital alone isn’t enough when applying service design thinking. Offline and online channels must be considered at every touchpoint.249 During the service design process, designers should invite patients into the room with experts. Their journey through the healthcare system should be considered carefully. In this way, it is possible to track feelings and thoughts during interaction

with a product, a service with a health care provider. Consequently, it becomes easier to find critical steps where the system has failed in interacting with users or where it has supported and nurtured them.250 By the same token, the clinician and staff experience must be thoroughly examined with the patient’s experience. In this way, it is possible to define patients’ pain points, research better tools to help them or improve the organization to address their needs. With service design doing, the focus is holistic. Front-end (what the patient sees and experiences), back-end (what happens behind the scenes to deliver the patient experience), support processes that make it all happen, and online and offline channels

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Service design goes beyond the vision of stakeholders as passive recipients of the functionality, to see them as active co-creators both in the service design process and in the use of these systems.

and interactions; all must inform the ultimate service design. Especially in the weaker social groups, access to digital tools for health and wellness management is limited. Even if health systems can offer wearable apps or products, they must provide education to improve digital literacy and health literacy.251 No matter who the patient is, a diagnosis of a chronic condition can be traumatic. Technology is not the primary solution. Real human connection, empathy, and concern for the patient must be at the center of attention, with technology playing a supporting role to the maximum. Services must be designed to follow patients on treatment options and manage their condition. Staff should be trained to

be sensitive and inclusive when working with patients.252 Concerning the research context analyzed, service design can help to address the challenges of user adoption, through a human-centered, participatory, holistic, and creative approach.253 In this way, organizational complexity and interactions with the healthcare system and in particular with patient data management are simplified for all stakeholders. The design of services goes beyond the vision of stakeholders as passive recipients of the functionality provided by EHR, to see them as active co-creators both in the service design process and in the use of these systems.

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5.3

CASE STUDY: A SERVICE DESIGN APPROACH FOR THE IMPLEMENTATION OF EHRS

A study by Jorge Grenha Teixeira, Nelson Figueiredo de Pinho, Lia Patrício (2019)254 analyzed how a service design approach could support the development and implementation of national EHRs. A case study methodology was followed to achieve this objective, and investigates contemporary phenomena in-depth, in their real context, and is suitable to answer the questions “how” and “why”. The case study concerned the Portuguese EHR, then called Plataforma de Dados de Saúde (PDS). The study accompanied its service design process, from exploration to conception, reflection, and implementation, including the evaluation of the system by users. In this case study, the focus was on health professionals. This research has been carried out with the cooperation of Portugal’s Ministry of Health, which has allowed full access to the

5.3.1

country’s health system. This collaboration has made it possible to deepen ethical issues, such as data protection. The Portuguese health system includes both public and private organizations. To maintain strict control over access to information, the Portuguese authorities decided from the outset to include only publicly owned organizations in the EHR. Therefore, the data collection for this case study focused on public health organizations, such as hospitals and primary care centers. To strengthen the research, the data collection included semi-structured interviews and focus groups with different stakeholders (doctors, nurses, pharmacists, citizens) from various organizations (hospitals, including emergencies and hospital admissions, and primary care centers), as well as workshops with these stakeholders and internal design meetings.

This study accompanied its service design process, from exploration to conception, reflection, and implementation, including the evaluation of the system by users.

PHASE 1: EXPLORATION

The first phase is exploratory and represents a crucial starting point for the design of human-centered services. It provides an understanding of the needs, activities, objectives, and context of the health workforce.255 This study involved qualitative research,256 which included semi-structured individual interviews and

focus groups between citizens and health professionals (doctors, nurses, and pharmacists). Adopting a holistic perspective and looking at the different actors involved, this phase allowed a rich understanding of the healthcare staff and patient experience. It brought to light synergies and conflicts that were addressed in subsequent steps.

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In this phase, the visual tools of service design, were used to map the sequence of the user’s activities and the respective touchpoints with the service.

In this phase, the visual tools of service design, i.e., the client’s journey, were used to map the sequence of the client’s activities and the respective touchpoints with the service from the user’s point of view.257 The qualitative study also highlighted the doctor’s objectives, i.e., the need for more information and relevant, accurate, and understandable information. Interactions between stakeholders also emerged as im-

5.3.2

portant objectives. Physicians and patients were concerned about the time lost by doctors on the computer removed from interacting with the patient. Physicians were also concerned about the availability of the right information, as navigating through large amounts of data was considered complicated and time-consuming (Fig.47). These results were crucial in imagining new EHR service concepts in the design phase.

PHASE 2: IDEATION AND REFLECTION

Based on the understanding of the different stakeholders’ experience, new EHR service solutions were imagined and tested during the conception and reflection phases. The ideation phase encompassed regular meetings with the internal design team and participatory design workshops with different stakeholders. These workshops resorted to the Multilevel Service Design (MSD) visual models to engage with stakeholders and involve them in the EHR service design. MSD represents a new interdisciplinary method for designing complex service systems. MSD synthesizes contributions from new service development, interaction design, and the emerging field of service design.

Multilevel Service Design (MDS) approach to design the health service for each stakeholder includes three levels: service concept, service system, and service encounter. •

• •

Designing the service concept with the customer value constellation of service offerings for the value constellation experience. Designing the service system, comprising its architecture and navigation, for the service experience. Designing each service encounter with the Service Experience Blueprint for the service encounter experience.258

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The ideation phase encompassed regular meetings with the internal design team and participatory design workshops with different stakeholders.

Figure 47 Source: Jorge Grenha Teixeira, Nelson Figueiredo de Pinho, Lia PatrĂcio. (2019)

Doctorâ&#x20AC;&#x2122;s Customer Journey

Activities related to EHR

General model of multilevel service design

Understanding the customer experience

Designing the service offering

Designing the service concept

Value Constellation Experience

Customer Value Constellation

Designing the service system

Service Experience

Service System Architecture and Navigation

Designing the service encounter

Service Encounter Experience

Service Experience Blueprint

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Figure 48 Source: Raymond P. Fisk (2011)

5.3.3

PHASE 3: IMPLEMENTATION STAGE

Following a MDS approach, stakeholders, such as physicians, were involved from the beginning and were able to participate in the definition of the service concept by prioritizing each component of this concept through two participatory design workshops. The EHR service concept was designed with the constellation of customer value. The customer value constellation represents the services that EHR should provide to support customer activities and objectives. An essential result of this phase was implementing a new patient summary to allow clinicians to quickly move to the latest clinical information. The patient summary was highlighted as an essential aspect of the service concept underpinning the EHR. In this case, this meant that the development of a patient summary was not only part of standardization, but also considered a priority. After designing the EHR service concept through the constellation of client value, the process went as far as creating the service system to support this service concept using the service system architecture. Besides, workshops with healthcare profes-

sionals allowed these experts to participate in the design of the EHR service architecture and ensure that it suited their needs. Finally, each service encounter or touchpoint was designed using the service experience blueprint. It provides a detailed design of each interaction between a stakeholder and the EHR using a specific interface. These visualizations were the basis for the development of the use cases. However, the blueprints of service experiences were handy tools for communicating with the development team and for tracking design decisions in EHR development. This case study shows how service design can support the development of HIS and EHRs by designing for and with stakeholders through a human-centered and participatory approach. The holistic and visual nature of service design also fostered the interaction with users and facilitated iterations of initial concepts. The EHRâ&#x20AC;&#x2122;s extensive use across the Portuguese National Health Service and the positive feedback from the healthcare professionals show that this service design approach enabled a successful HIS development.

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During the implementation stage, workshops with healthcare professionals allowed experts to participate in the design of the EHR service architecture and ensure that it suited their needs.

Customer value constellation from the doctor’s perspective

Figure 49 Source: Jorge Grenha Teixeira, Nelson Figueiredo de Pinho, Lia Patrício. (2019)

Service system architecture from the doctor’s perspective

Figure 50 Source: Jorge Grenha Teixeira, Nelson Figueiredo de Pinho, Lia Patrício. (2019)

Service Interface

Customer

Doctor

Legacy System

Backstage Support

EHR Interface

PDS

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5.4

CONCLUSIONS

Previous research highlights the importance of involving users in EHR’s design to adapt their activities and needs. In order to address this challenge, this chapter introduces a service design perspective for EHR design. The MSD approach enables the integrated design of the service offered at different levels, contributing to the design of complex service systems. Its multilevel approach also provides a human-centered, participatory, holistic, creative, and iterative approach that supports the design and implementation of EHRs. Through the participation of stakeholders in the design phases, it is possible, as demonstrated in the case study, to respond to users’ needs facilitating access to digital tools for health and wellness management, improving digital literacy, and health literacy. Finally, MSD synthesizes the contributions of different fields into an interdisciplinary service design method. It is thus possible to define the characteristics that the project must follow during its development to respond to the user’s needs and replicate the model analyzed in the chapter. •

Human-centered: service design focuses on understanding and designing for all stakeholders impacted by the service system to understand their experience and design a system that supports their activities and goals.

•

Participatory: service design for customers and with customers means that healthcare practitioners and patients are interviewed in the beginning, to inform the design process, but they are also actively involved in design decisions through the participatory workshops. This step is crucial to ensure the EHR would fit different needs and priorities, and it also contributes to legitimate design decisions among different stakeholders.

•

Holistic: instead of focusing on the development of a specific system in isolation, service design tries to understand how a system fits in the overall activities and contexts of different stakeholders. In the Portuguese EHR, the design involved understanding different stakeholders, and then develop the EHR to fit and enhance their experience. This condition enables the design of the EHR with balanced-centricity in mind, meaning that the service not focus on one user alone, but should support the different actors in reaching their goals in a balanced way, managing conflicts and leveraging synergies.

•

Creative and visual thinking: service design uses dedicated visualizations throughout the entire design pro-

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Keywords: #service design #stakeholders #co-design #tools #visualization #UX #UI

cess. Concerning the Portuguese EHR, design for each stakeholder resorted to several models from Multilevel Service Design to go through the process of exploration, ideation and reflection, and implementation of the EHR service. These models support the design of the new service concept, service system, and of the interactions at each specific interface as well as the connection to the technical development of the system through use cases. These models do not resort to any specific technical language but have a clear visual structure so that stakeholders from different backgrounds can understand and interact with them. In the ideation and reflection stage, stakeholders engaged in participatory workshops supported by these models and gave valuable feedback to improve the initial proposals. •

Iterative: the service design process involves several iterations for each phase and the whole process. In the case of EHR, the participatory workshops using the visualizations of the service design allow for iterations within the design and reflection phase and a second qualitative study after implementation that highlight new opportunities for improvement. This iterative approach allows designers to test and obtain feedback with different stakehold-

ers throughout the design process, exploring new ideas and changing bad decisions at the beginning of the development process, before they became too expensive to change. In order to have the characteristics mentioned above, the project must follow the following steps: •

Start from the customer need: Generate problem statements from these. Consider the possible problems to tackle, and which ones have the most significant impact on the patient experience.

•

Create a vision for meeting customer needs: Become obsessively patient-focused when creating solutions. Design every touchpoint — those visible to patients and those that are happening behind the scenes.

•

The project must include multidisciplinarity through participatory Co-design with patients, clinicians, and support staff so that services have tangible outcomes. Reshape organizations to tackle customer pain points and deliver better experiences and outcomes.

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CHAPTER 6 6

INTRODUCTION TO THE CONCEPT PHASE

This chapter introduces the design and concept generation phase. Idea generation is the creative process of generating, developing, and communicating new ideas in a visual, concrete, or abstract format. All these ideas are formulated as part of the design thinking process, which begins with innovation and then moves on to development and, finally, implementation. In order to define the concept, the issues that it wants to solve must be defined. Once the objectives to be solved, the reference target

6.1

and the relations between stakeholders are clear; the concept takes the first shape.

This chapter translates to the problems encountered in research into design opportunities.

PROBLEM DEFINITION

As analyzed in the chapters on the literature review, the Chinese health care system presents many interrelated issues. One element that links these issues and that could improve the health system, the user experience, and have a positive impact on the future of health care is the EHR system (fig. 51). However, this system is not implemented sufficiently and is not user-centered. In recent years, Chinese citizens have asked the government to digitize their medical booklet and make EHR available to patients. Some hospitals in large cities have an official account on WeChat and allow patients to connect through the platform and validate them with the health card to access

their medical records, but, as seen in chapter 4, there are many constraints corning standardization and data understandability. Since Tencent, WeChat provider, has given the willingness to open WeChat API channels to hospitals that request them in collaboration with the government, working on the implementation of this service can integrated healthcare experience for patients. The first activity was to analyze the existing service-system on WeChat and to understand its characteristics. From this activity, it was possible to formulate the question to guide the design.

How to improve the interoperability of the EHR system and make data visualization user-friendly and user-centered?

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Issue definition for the formulation of a brief.

Problem definition and project implementation

Issues â&#x20AC;˘ Chapter 1

Disparity of health resources between urban and rural areas

Mistrust between doctors and patients

Lack of preventive care

Underutilization of primary care and overutilization of 3rd Category hospitals

Failures in emergency management

Irrational drug prescription

Lack of cooperation between family doctors and patients

Appointment Making

Reminders

Telemedicine

Health Records System

Pharmacy

Awareness

Lack of health knowledge Discussion forum

Issues â&#x20AC;˘ Chapter 2 Medical education 9.

EHR fragmentation

10. Hospital Centrality 11. Lack of data interoperability

Emergency and Triage

To implement on WeChat

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New concept

Figure 51 Source: Federico De Luca (June 2020)

6.1.1

WECHAT HEALTH APPLICATION USER INTERFACE Analysis of the app’s functionality, its interface and user experience during use. Payments (receiving and making)

Services

Public services (hospitals, registry

Health services (reservations, articles, online consultation)

The user accesses the WeChat services (A) and selecting the “Health” services (B) the homepage appears. The Home page (C) includes all the primary health features. Among the various sections, there is the section for in-depth analysis and education of users on the most common health issues through articles and videos, the section to book appointments, consult a doctor, and the section to book general examinations and make hospital registrations directly online avoiding files. Scrolling the

home page, users can also view data on the spread of Coronavirus at the national and global levels. Under this section, there are useful tools for self-diagnosis and tests for the most common and widespread diseases. Through this section, it is possible to consult a doctor free of charge or obtain tools for facilitating the reading of the data. The section below reports the topics most searched for by users. By selecting these topics, the user can keep up to date with the latest news and articles.

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Tencent Health, Home (C) Search (symptoms, doctors, hospitals)

National Health Insurance (electronic voucher, adv)

1. Health knowledge 2. Find a doctor 3. Online registration for visits 4. Appointment for physical examinations

Medical videos (promotional and educational videos)

Coronavirus data (worldwide and national data)

National Health Insurance (electronic voucher, adv)

Assistant

Tools (tools for self-diagnosis and consultation)

My concerns (recommendations, articles and self-diagnostics)

Other illnesses Feedbacks and agreement Home (C), Keep healthy (D), Personal area (E)

E Concept Generation / 137

Keep healthy

Training physical exercises Test/quiz for health (depression test, posture test, infant health quiz, other quiz)

Physical examinations (checkup packages for work, for women, for the elderly)

Childcare articles and tests Health mangement center (frequent diseases: hypertension, diabetes, coronary and lungs problems

Health knowledge (articles on health frequent topics)

This section (D) provides useful information to maintain a healthy lifestyle and prevent influences and illnesses. Above are daily data on seasonal flu rates related to climate, allergies. By scrolling the menu, users can do health tests on the most researched topics or according to their interests. Users can also book and purchase general visits to obtain certifications. The other sections are about raising awareness and education on the most common health issues. D

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Registration records Type of registration (by assistant, department, and disease)

Insurance Card (for payments)

1. Consulting records 2. Registration records 3. Medical records 4. Favorite records

Hospital services (stay updated on news)

Hospitals available

The personal area (E) collects user information and activity history. This section presents the userâ&#x20AC;&#x2122;s data and the userâ&#x20AC;&#x2122;s digital health card, through which the user can pay for visits, examinations, medicines with the money credited by the insurance, and make online registrations in hospitals. The user can add and follow the referring hospitals and receive notifications. This section does not contain the userâ&#x20AC;&#x2122;s EHR shared by health care facilities.

Through this section (2), the user can register online for hospitals, avoiding queues. This function helps the user in the registration phase to the department of interest, through advice and indications on the visit he/she has to do. The interface allows the selection of departments also through filters, organized by virtual assistance, department, and diseases.

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Frequent bookings Type of registration (by assistant, department, and disease)

Research Filters (by region, distance, package)

1. Free clinic 2. Daily frist aid 3. Medical videos 4. Advanced info Health packages (offers and prices. Different packages for different people e.g.: pregnant women, elderly)

Specialist area (sponsor, adv)

Menu (home, doctor, research, personal area

This section (3) allows the user to book a generic visit. The menu allows the user to view different packages offered by hospitals for different users (elderly, students, pregnant women) and different purposes (certification to work or study). It is also possible to book for the user and others.

This section (4) contains general health information. Through these functions, the user can obtain more medical information, consultations, opinions of doctors. This section repeats much information already displayed on the homepage.

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6.1.2

CONSIDERATIONS AND REFLECTIONS OF THE SERVICE

WeChat is a predominantly social application, and in general, the sub-category health is mainly oriented to the sale of services and education. Analyzing in detail the app, it is evident that the application is more user-centered for sales services and less so for educational services and diseases of those who use the service. Besides, there is a lack of order in the content shown. Often the user interacts with too many and repeated choices, causing confusion and a sense of bewilderment. The application, to become a more professional and performing tool, should improve its navigation interface and contents, eliminating unnecessary information, and simplifying the user experience. The lack of an archive and organization function of the user’s EHR limits the service offered and does not allow the user to obtain services customized according to his clinical picture. If this were implemented, the user could benefit not only from tailor-made information and educational programs but also from more specific care and consultations. On the doctors’ side, the professionals consulted could access the user’s clinical information avoiding repetition of examinations and tests.

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Considerations about the potential, limitations of the app, and the improvements to be made to improve the user experience.

6.2

INTERVIEWS

To understand what information is essential for creating a digital patient record, interviews with health experts were necessary. A preliminary interview with an expert in China made it possible to verify whether the information shared by the hospitals with the patient was sufficient to create a complete clinical picture. Through semi-structured interviews carried out at

the Azienda Ospedaliero Universitaria Policlinico Vittorio Emanuele of Catania (Italy), it was possible to analyze all the phases of implementation of the FSE platform, the challenges related to the development and prospects. The interview also allowed to deepen in detail the type of clinical information that an EHR system must contain to be effective.

❝

Dr. Jiao Yong

Director of Medical department of Bazhou People’s Hospital, Xinjiang

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Interview with the Director of Medical department of Bazhou People’s Hospital, Xinjiang (China) Source: Federico De Luca (Nov. 2019)

❝

Dr. Giuseppe Saglimbene

Designing a system to collect patients’ clinical information is a process that requires step-by-step advancement, but once enabled, it provides an astonishing return in terms of efficiency and time-saving.

❞

Quality and Clinical Risk O.U. Medical Manager

❝

Dr. Maurilio Danzì

The potential of an EHR system accessible by the patient is considerable and allows data exchange between different facilities in distant locations. For this reason, the data uploaded on the platform are standard (CDA2 + Pdf format), and patients can access, visualize and download these documents. ❞

Chief Medical Officer Hospital contact person for waiting lists management

❝

Dr. Rosanna Di Stefano

The system that we are enabling must guarantee access to different types of users: doctors, patients, and administrative staff. In this way, the administrative staff can monitor the system’s situation and intervene with new guidelines.

❞

IT Coordinator and FSE Manager

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Interview with doctors at Azienda Ospedaliero Universitaria Policlinico Vittorio Emanuele (CT) Source: Federico De Luca (Feb. 2020)

6.3

THE CONCEPT

The research aimed to conceptualize an EHR system platform for patients in China that overcomes hospital centrality in the system and the data discontinuity and fragmentation management. The concept concerns the implementation of WeChat’s existing service systems, enabling patients to have their Patient Health Records (PHR) and tools to understand their clinical situation. The first phase of the concept concerns the reorganization of the existing system with the integration of EHRs. In this way, the system has personalized information and health offer based on the user’s information favoring prevention over treatment. The implementation areas that are currently not covered by the existing service, which may also represent opportunities for improving existing services. •

Uploading of data on the platform and EHR interoperability.

The uploading of patient data on the platform can be done in two ways: through their WeChat portal, hospitals can upload patient data to the platform. Alternatively, if the healthcare facility does not have access to the WeChat portal, the user will be able to feed the system through manual loading by scanning paper clinical information. In this way, the system will be able to contain the clinical history, and the patient will be able to share this information with healthcare facilities and other related ser-

vices without having to do new clinical examinations each time. All clinical information will be digitized on the platform and organized by the level of detail and medical type. •

Create awareness in the patients about their clinical condition.

Patients will receive assistance in reading their clinical picture through a virtual assistant and personalized articles, sorted by their clinical data, to facilitate understanding and improve medical education. At the moment, the articles on the platform are not interwoven with the user’s information, remaining open to a general readership. Technology plays a crucial role in this implementation. Artificial intelligence, indeed, simplifies the lives of patients, doctors, and hospital administrators by performing tasks that humans typically do, but in less time and at a fraction of the cost. •

Management of clinical triage.

ermegencies and

Currently, patients are saturating the higher category hospitals because they are unable to assess the severity of their illness and lack of confidence in primary care. Implementing a service dedicated to self-diagnosis and first clinical triage could improve patients’ awareness and direct them towards the most suitable treatment and location, in favor of a better distribution of patients in healthcare facilities.

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Personal data in personal systems

Personal data in institutional systems

M e d ic al

Electronic Health Records

PHR

Self-tracking Health Insurance Co g n i t i v e

Financial Personal e-Health System

Intentions, plans...

viro

n m e n ta

Research and education

l Educational resources

Sensors

Geolocation data

Medical evidence data on web

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Figure 53 Personal e-Health System Source: Federico De Luca (June 2020)

Figure 54 Source: Federico De Luca (June 2020)

Personal E-Health System

HIS system

Smart interfaces

Users

Server

Security policy

Health Information Management System

Citizens

Healthcare Providers

•

Utilize personal health records in any place, any time.

•

Management of Patient Health Records

•

Expert counsel

•

Remote care and diagnosis

•

Preventive healthcare

•

Recommend personal health articles and exercise, health food, and diet menu

•

Selling/buying personal health information

Health care Information database

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6.4

SYSTEM MAP

The map shows three types of flows: data, revenue, and physical interactions. The data flow within the system connects all stakeholders to optimize the use of user information to generate a personalized offer of services and information. Thanks to the optimization of services for the user, the system can monetize through the booking of medical examinations, the sale of medicines, tailor-made insurance packages. Finally, the flow of physical interactions is significantly reduced compared to the current system, making it indispensable only for medical examinations and clinical examinations.

6.5

CONCLUSIONS

By analyzing the existing services, it was possible to define the strengths and weaknesses of state of the art, elaborate a design brief, and define a concept. Through the maps, the ecosystem of stakeholders and touchpoints that constitutes the concept appears more transparent. However, as analyzed in the previous chapter, the next step is to co-design with professionals and users to meet the userâ&#x20AC;&#x2122;s needs and improve the organization of the system related to patient data. Therefore, it is essential to clearly define the objectives that the Workshop must meet through the activities and the use of service design tools.

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Keywords: #concept #design tools #touchpoints #stakeholders #user needs

Concept System Map

Insurance

Pharmacy

T e n c e nt

Source: Federico De Luca (June 2020)

W e C h at

WeChat Health

Hospitals

Patient

Revenue Data Physical Interactions

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Figure 55 The system map shows the data flow, revenue and physical interactions between stakeholders.

Government

Laboratories

CO-DESIGN WORKSHOP

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CHAPTER 7 7

CO-DESIGN WORKSHOP

Co-design practice enables the active participation of the users to the creative development of a product by interacting directly with design and research teams. Research demonstrates all people can be creative and that users bring different points of view that inform design and innovation direction. Co-design represents a valid method in all stages of the design process, but especially in the ideation or conceptual phases. Partnering with users or experts ensures their inclusion in knowledge development, idea generation, and concept development on products whose ultimate goal is to serve these same users best.259 A co-design session can yield a variety of data outcomes, from the creation of cognitive maps to mockups of a product or service. Regardless of the goal of the sessions, it is essential to prepare participants beforehand by allowing them to think and reflect about the topic to be studied. The research methods for this initial preparation help the participants reflect on activities that otherwise might be taken for granted in everyday life, and reflect on experiences they usually perceive as routine. Researches and designers have been experimenting with a variety of tools that allow participants to reflect on their life

experiences in ways that feel less intrusive and faster and more enjoyable. When choosing which research methods to use in this phase, it is essential to bear three considerations: What the research goals and questions are. This Co-design aims to improve the UX and UI of the WeChat Health service/ platform. How does the app interface organize user data? How does the app better integrate some features? How to make the application user-centered and user-friendly? Who the audience is and what tools they can use. The workshop involves designers from UX and UI experts in the medical sector and familiar with the Chinese context; the use of service design tools such as maps, and mockup interfaces facilitate design thinking. The stage of the project and the users who are invited to participate. The project is still in the concept phase. The primary lines and operation of the system have already been predefined, but there is no definition of some dynamics within the application. The role of experts during the Co-Design is to develop and improve the dynamics of interaction between the app and the user, integrating the functionalities that are now fragmented.

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This paragraph explains what the Co-Design objectives are, who the participants are, and why it is useful to organize this kind of activity.

7.1

CO-DESIGN TEAM GROUP A

Martina Curcio

Mohamad Bey

Yuyuan Chen

UX and Product Designer for Medical Devices at Comftech

UI and Product Designer

UI and UX Designer at Digital to Asia Srl (Italian-Chinese Company)

GROUP B

Federico Chiusaroli

Benedetta Beltrami

Product Designer at Midea (Chinese Company)

Product Designer for Medical Devices at Centro Clinico NeMO

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For this Co-Design session, the participation of experienced UX and UI designers for the medical sector was necessary for reaching the aim. For each group, there was an experienced member in the design of services for the Chinese context.

7.2

CO-DESIGN PROGRAM

CO-DESIGN AIM: To improve the UX and UI of the Platform/System 1. Warm-up • 5 mins

Warm-ups can be described as exercises one normally runs right before the main proceedings to help participants relax and ease people into a group activity or learning situation. Warm-ups go very well with design thinking because they support many of its attributes, such as being curious and having an open mindset as well as being mindful of and collaborating with other people. 2. Introduction • 10 mins

Presentation of research, critical design areas, case studies analyzed to promote understanding of the design context. Brief introduction on the concept to be implemented. 3. Pick a Scenario • 5 mins

Participants will be divided into two groups and will have to draw a scenario map. This map allows them to know which activities they will have to develop. 4. Build the Customer Journey • 20 mins

Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step. 5. Discussion • 10 mins x2

The moderator and the groups will discuss the work done according to the evaluation criterion of the ideas “I like, I like, I wish”. 6. Build the User Interface • 20 mins

Each group will have to create with the templates the User Interface of the analyzed scenario. It is recommended to add details to the wireframe of the interactions. 7. Discussion • 10 mins

The moderator and the groups will discuss the work done according to the evaluation criterion of the ideas “I like, I like, I wish”. 8. Break • 6 mins

Regenerate your energy!

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The program has been provided in advance to participants to enable them to search for information and become better acquainted with the context.

7.3

COMPLEMENTARY TOOLS

The Co-Design Workshop focuses its creative intent on achieving a practical and immediately feasible outcome. It is possible thanks to the involvement and cooperation of actors active in the development of the product or service in question. In this way, clear guidelines can be given for the subsequent stages of work. During the Co-Design Workshop, it is essential to practice all those tools that facilitate collaboration between actors who speak different “languages.” The mix of instruments used is calibrated ad hoc concerning the operational purpose of the workshop, the object on which people are called to confront each other, and the mix of actors involved. Some of these tools can be card-sorting, pin-wand brainstorming, map building such as a system map, stakeholder map, experience map, or storyboarding.

description, etc. based on the specific need. They act as prompts to suggest new interpretations of a problem and induce considering a different perpective; they can be used in many different ways, from identifying priorities to discussing relationships or simply facilitating the conversation.260 In order to favor the development of ideas more linked to the Co-Design activities (Customer Journey map and User Interface map), it was helpful to use the System map of the concept, to have a complete picture of the interactions between stakeholders and a User Interface mockup of a health care application to draw inspiration. Brainstorm Cards can be downloaded from this link: https://servicedesigntools. org/tools/issue-cards.

In this Co-Design session Brainstorm Cards were also used to facilitate the creative processes. “Brainstorm Cards or Issue Cards are used to promote discussion, to suggest new avenues of exploration, to structure thinking, and to spark ideas. They can be especially useful when the group feels stuck, or is unable to move away from familiar thinking. The basic concept behind issue cards is to isolate a specific element into each card, and then use the cards as starting point for a 1:1 or group conversation. An issue card can contain an insight, a picture, a drawing, a feature, a keyword, a

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In order to stimulate creative processes, it was useful to integrate some tools such as Brainstorm Cards, System Map of the concept, and User Interface mockup of a health care application.

Figure 56 Co-Design Tools: Post-it, stickers, colored markers to facilitate the organization of the contents. Source: Federico De Luca Co-Design (June 2020)

Figure 57 Brainstorm Tools: Brainstorm cards, System Map, UI mockup of Health app. Source: Federico De Luca Co-Design (June 2020)

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7.3.1

PERSONAS

When developing customer personas, the focus should be on creating personas that represent the main market segments that could be used throughout the company. Each persona is a reference model representative of a specific type of users. They can be called behavioural archetypes when they focus on capturing the different behaviors without expressing a defined personality or socio-demographics. The more the archetypes assume a realistic feeling, the more they become real personas, fully expressing the needs, desires, habits and cultural backgrounds of specific groups of users. From the research and interviews emerged characters that represent the target audience of the project. Through the personas, it is possible to translate and visualize these characteristics. This tool allowed the Co-Design participants to have a clear design target and orient the User Experience and the User Interface towards this kind of user.

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Each persona is a reference model representative of a specific type of users.

Xinyi Yao, 28 Mother of a congenital cataract patient Congenital â&#x20AC;˘ In/outpatient

Daily routine 7 - 9 am

9 am - 1 pm

with her child and Wakes up at 7:30 am Goes mother to the park

1 - 7 pm

7 - 9 pm

9 pm - 1 am

Streams TV series

Plays with her child

Takes care of her beauty routine

Prepares breakfast for the whole family

Prepares lunch

Spends time on-line shopping

Prepares her child for bedtime

Spends some time online before bed

Gives her mother and child the right medicine

Has lunch at 11.30 am

Has dinner with the whole family

Chills with her husband

Goes to sleep

About

She is a young and attentive mother that decided to stop working to take care of her newborn. Her child has a congenital illness that needs to be tracked and monitored. She also takes care of her elderly mother that has constant medical check-ups.

Organization

Frustration

She has to manage not only her medical records but also her child and her parent. It could get confusing and stressful when the amount of paperwork starts piling up, especially because she feels very responsible.

Clarity

Mantainance

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Yuenan Hou, 21 Student Temporary â&#x20AC;˘ Outpatient

Daily routine 7 - 9 am

9 am - 1 pm

1 - 7 pm

7 - 9 pm

9 pm - 1 am

Wakes up at 8 am

At 11:40 am has lunch with friends

Goes to library

Studies in library

Spends time online

Has breakfast just before class

Chills in nature

Works out

At 9:30 pm goes home

Chats with friends

Starts class 9 am

Starts another class at 1 pm

Has lunch in university

Chills out at home

Goes to sleep

About

He moved out and changed the region to study. He spends most of the time studying and the rest of it with his close friends. He is not reliable when it comes to storing his medical data, which is kept in a booklet given by the hospital. His daily life is already distracting him by focusing on his health. Frustration

It is not easy for him to understand which hospital to choose when something is terrible. It is not very clear because his visits are just occasional, so he has not built up experience when it comes to hospitalization and data reading.

Engagement

Integrated Systems

Automated

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Yao Cheng, 78 Retired Chronic • Outpatient

Daily routine 7 - 9 am

9 am - 1 pm

1 - 7 pm

7 - 9 pm

9 pm - 1 am

Wakes up at 7 am

Works out with friends

Watches news on TV

Spends time on WeChat

Gets ready to sleep

Has breakfast at 7:30 am

Goes to market for the daily meal

Has a walk with her husband

Watches video content on-line

Goes to sleep at 10 pm

Gets ready to go out and meet friends

Eats lunch with her husband at 11:30 pm

Has dinner at 6 pm with her husband

Video-chats with her daughter

Sleeps

About

She lives in a traditional “Lilong” house in the Siping Rd. district in Shanghai. She was an ordinary industry worker, and after retirement, she started working out every day with friends. They meet in parks and squares where they socialize and catch up on the latest ways to stay healthy using technology. Frustration

Simplicity

Anticipation

She asks herself why every hospital she visits needs to repeat examinations she already has done. She keeps all her medical recordings in a plastic bag at home, but they are almost useless because they are not sorted efficiently and smartly. This makes cross-examination hard and exhausting.

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Guidance

7.4

ACTIVITY 1: WARM UP

Warm-ups can be described as exercises that run typically right before the main proceedings to help participants relax and ease people into a group activity or learning situation. Warm-ups match very well with design thinking because they support many of its attributes, such as being curious, having an open mind, and being mindful of and collaborating with other people. In this Co-Design, the Warm-Up consisted of an â&#x20AC;&#x153;aperitif gameâ&#x20AC;? to stimulate creativity with questions to each participant. For each right answer, the participant received a snack. This session allowed participants to familiarize themselves with each other and dampen the tension. Once the ice was broken, working in groups was easier.

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Breaking the ice and familiarizing members of the group improves the creative processes.

Figure 58 Some snacks to regenerate participants before and during the session. Source: Federico De Luca Co-Design (June 2020)

Figure 59 Group A and B during the Warm-Up. Source: Federico De Luca Co-Design (June 2020)

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7.5

ACTIVITY 2: INTRODUCTION

In order to facilitate the orientation of the participants and to familiarize them with the context, an introduction through a presentation of the research was necessary. The contents of the presentation were: 1. Overview of Chinese Healthcare. Brief of the characteristics of the Chinese health system and the issues summarized in chapters 1 and 2. 2. Chinaâ&#x20AC;&#x2122;s Hospital centricity vs. Patient Centricity. Description of the criticalities that characterize the current model in China and of the benefits of the patient-centered model. 3. Provider-centric Healthcare and Patientâ&#x20AC;&#x2122;s data in China. Brief on moving patient health data into the health information system. 4. Access to health information by patients. Short introduction with a journey map on how patients access their clinical information. 5. Main users. Comments on the difficulties encountered by users in organizing their health data. 6. Negative Circles. Negative consequences of the current system on efficiency and user perception. 7. WeChat Health. Description of the functionality of the current application. 8. WeChat Health Weaknesses and Limits 9. Case study: An Overview of e-Health Services in Estonia. Example of the

potential that the system could have through the representation of a successful case study. 10. New System Map. 11. Users. 12. Description of the Co-Design activities. Brief of the organization, time, session modalities. At the end of the presentation, the speaker answered questions from participants.

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Brief of the design context, research, and Co-Design activities.

Figure 60 Introduction on how to access health data for patients from hospitals: Patient's Hospital Medical Book Source: Federico De Luca Co-Design (June 2020)

Figure 61 Viewing the video explaining the case study E-Stonia: "An Overview of e-Health Services in Estonia". Source: Federico De Luca Co-Design (June 2020) Video retrieved from: https://bit. ly/30YxIxb

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7.6

ACTIVITY 3: PICK A SCENARIO CARD Participants were divided into two groups and had to pick a scenario card. This card allowed them to know which activities they had to develop. The groups have selected four scenarios out of the nine available.

Figure 62 Scenario Cards Source: Federico De Luca Co-Design (June 2020)

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A user scenario is a story that describes, in an exemplificatory and narrative manner, how the user is going to interact with the service during a specific situation of everyday life. Writing user scenarios require to identify a specific context in which the action takes place, as well as characters and needs that defines the attitude of the user. The scenarios can be first written as stories, describing the experience step by step, and then supported with drawings, pictures or clips of the experience, adding a visual layer to it.261 The use of this tool for Co-Design allowed participants to develop in detail the selected activities without influencing too much the creative process. The scenarios proposed for this Co-Design are the result of research and represent the most critical areas of design intervention. The development of these scenarios allows to better connect areas of the existing system (Fig. 51) and implement new functionalities to meet the user needs.

The scenario cards that the groups could pick were nine: 1. Managing an emergency from the application. 2. Management of a self-diagnosis from the application. 3. Purchase of prescription drugs. 4. Access to patient clinical data for the doctor. 5. Access to patient clinical data. (patient) 6. Request for consent to access the patientâ&#x20AC;&#x2122;s clinical data for the doctor. 7. Doctorâ&#x20AC;&#x2122;s appointment. 8. Manual feeding of data into the system. 9. Create awareness in the patient about his/her clinical condition. In addition to a brief description of the activity to be developed, the papers contained a few questions to understand the context better and stimulate creativity. The extracted scenarios are highlighted in blue.

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7.7

ACTIVITY 4: BUILD THE CUSTOMER JOURNEY

Build the Customer Journey • 20 mins Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step.

SCENARIO NAME

Ogni gruppo dovrà costruire la Customer Journey dell’utente realtiva allo scenario pescato. è importante che ogni gruppo evidenzi le criticità di ogni step.

GROUP

Figure 63 Customer Journey Map Template (A2) Source: Federico De Luca Co-Design (June 2019)

USER ACTIONS

EMOTIONAL CURVE FACE TO FACE

DIGITAL

PAPER

PRODUCT SPACE

DOUBTS

Figure 64 Group A and B during the CJ design phase of Scenario 1 and 4. Source: Federico De Luca Co-Design (June 2020)

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The customer journey chronologically describes the userâ&#x20AC;&#x2122;s route while using a service, starting from the moment he/she becomes aware of it until the moment he/ she finishes using it. The customer journey divides this route into steps and translates into a visual map that represents on different levels the action taken in each step, the channels through which the service manifests itself, and the touchpoints and people with whom the user interacts. Why designers use it? Mapping the customer journey is useful both in the design phase and in the research phase on an already existing service to make explicit the path that the user takes in its use. This activity makes it possible to clarify to all the actors involved in the design or research what happens at a certain point of the interaction and what ways it should occur. The drawing up of the map can take place through a design workshop or an understanding of the current service and helps to identify the elements to be available in order for the service to be presented to the client as coherent, fluid and consistent, with all the characteristics necessary for it to be used correctly.

How does it work? The customer journey can be mapped in a co-design phase that involves all stakeholders involved in the creation of the service. We proceed with post-it notes of different colors, one per reading plan, to describe what happens to the user, with whom and what is interfaced (touchpoints), through which channels he uses the service, and what actions he performs in each step. The path is mapped in chronological order from the moment the user becomes aware of the service, passing through its use, until the moment in which its interaction with it ceases. What are the expected results? The customer journey document is a visual map that develops horizontally in a chronological sense and can take on different graphic guises concerning who is drawing it. If the map is generated in a co-design session, the output will consist of a row of post-its that can then be formalized in a document; this will accompany the actors involved in the whole process of creation and implementation of the service in question.262

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Each group had to build the userâ&#x20AC;&#x2122;s Customer Journey related to the fished scenario. Each group had to highlight the critical points of each step.

7.7.1

ACTIVITY 4: SCENARIO 1

Build the Customer Journey • 20 mins SCENARIO NAME

Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step.

GROUP

Ogni gruppo dovrà costruire la Customer Journey dell’utente realtiva allo scenario pescato. è importante che ogni gruppo evidenzi le criticità di ogni step.

USER ACTIONS

Figure 65 Customer Journey Map of Scenario 1 (Managing an emergency from the application). Source: Federico De Luca Co-Design (June 2020)

EMOTIONAL CURVE FACE TO FACE

DIGITAL

PAPER

PRODUCT SPACE

DOUBTS

The group thought about the most critical situations in which the user may find himself, dividing them into actions and hypotheses. The first action is the “loss of consciousness” by an elderly heart patient. Hypothesis 1 user with a smartwatch. 1. The user is wearing a smartwatch that detects his/her heart rate and abnormal parameters while he/she loses consciousness. Because the device is

paired into WeChat Health devices, so it is familiar with the patient’s clinical situation, it will send an emergency call to the most appropriate hospital nearby. 2. The patient’s clinical data (Patient Summary chapter 4.2.1) is shared with the ambulance to help prepare suitable treatment for the patient and be alerted to possible allergies. Ipotesi 2 senza smartwatch.

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Scan the QR Code to access the video session and comments. (Italian only).

Hypothesis 1 user without a smartwatch. 1. The user does not have a smartwatch; the parameters detected are, therefore, less accurate. With AI implementations, the application detects anomalies in case the user has a loss of consciousness and sends notifications to the user. The system does not send the distress call immediately, but the application enters alert mode for a while and records the anomalous parameter in the app’s emergency section. 2. Since the system of the user who has lost consciousness is on alert, users with a WeChat profile in the vicinity receive a request for help to make sure the user is okay. 3. The mobile phone of the unconscious user shows the application screen with the user’s emergency code. Users who go to rescue, can then make sure of the real emergency, call for help by communicating the user’s identification code. In this way, the rescuers will have access to the user’s clinical profile and will be able to prepare the most suitable treatment.

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Figure 66 Participants at work on Scenario 1 (Managing an emergency from the application). Source: Federico De Luca Co-Design (June 2020)

7.7.2

ACTIVITY 4: SCENARIO 2

Build the Customer Journey • 20 mins SCENARIO NAME

Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step.

GROUP

Ogni gruppo dovrà costruire la Customer Journey dell’utente realtiva allo scenario pescato. è importante che ogni gruppo evidenzi le criticità di ogni step.

USER ACTIONS

Figure 67 Customer Journey Map of Scenario 2 (Management of a self-diagnosis from the application). Source: Federico De Luca Co-Design (June 2020)

EMOTIONAL CURVE FACE TO FACE

DIGITAL

PAPER

PRODUCT SPACE

DOUBTS

The group hypothesized several micro scenarios. The object in question is selfdiagnosis by a user with little awareness of his/her clinical picture. Hypothesis 1, a user with mild symptoms. 1. The user has mild symptoms that do not require to go to the hospital; the user can then consult the app to perform a self-diagnosis through a questionnaire.

Hypothesis 2 user with chronic diseases. 1. The app has recorded clinical information and knows the health status. Since the patient has a chronic disease, the app monitors the health status every day through a questionnaire and data collection. E.g., Does the user have high blood pressure or a glycemic peak? The application will ask the user to measure the values with a device paired with the system to receive the data directly.

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Scan the QR Code to access the video session and comments. (Italian only).

Daily data collection. (integrated with hypothesis 1 and 2). 2. The system collects user data daily through smart devices and mobile phones. At the end of the day, the application asks the user to check his health situation during the day. The collected data are compared with the userâ&#x20AC;&#x2122;s cynical history and crosschecked with others to predict possible pathologies concerning different factors (such as age and geographical area). If the application finds an anomalous clinical picture, it will advise the user on further investigation and consultation with specialized health facilities. These options are set according to the severity and accuracy of the diagnosis so that lowerlevel healthcare facilities are not excluded first if the diagnosis is minor. Further notes and comments. â&#x20AC;˘ These options represent informative advice, it is the user who decides which hospital to go to or book visits through the app.

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Figure 68 Participants at work on Scenario 2 (Management of a self-diagnosis from the application). Source: Federico De Luca Co-Design (June 2020)

7.7.3

ACTIVITY 4: SCENARIO 4

Build the Customer Journey • 20 mins SCENARIO NAME

Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step.

GROUP

Ogni gruppo dovrà costruire la Customer Journey dell’utente realtiva allo scenario pescato. è importante che ogni gruppo evidenzi le criticità di ogni step.

USER ACTIONS

Figure 69 Customer Journey Map of Scenario 4 (Access to patient clinical data for the doctor). Source: Federico De Luca Co-Design (June 2020)

EMOTIONAL CURVE FACE TO FACE

DIGITAL

PAPER

PRODUCT SPACE

DOUBTS

The object in question is the doctor’s access to patient data from the WeChat web portal. Hypothesis 1, doctor Access to patient clinical data during the medical visit. 1. The doctor accesses his WeChat web portal with his institutional credentials. 2. He then enters his agenda, where he finds information on appointments and activities with patients.

3. To access the patient profile, the doctor searches for the name in the system, and he/she can access only the information that the patient has decided to share with him/her. 4. If the doctor needs to view information that he or she is not allowed to access, he or she can send a request to the patient for consent. 5. The physician proceeds to enter the data during the medical examination

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Scan the QR Code to access the video session and comments. (Italian only).

into the system; the system records the examination and transcribes the keywords spoken by the physician to facilitate the classification of the data. In this way, at the end of the examination, the doctor can obtain a summary report. 6. If the physician notices that a specialist is required to carry out further investigations, the physician can forward the report of the examination to more competent specialists with the patient’s consent. 7. If an additional appointment is necessary to verify and investigate the clinical situation, the doctor can schedule a visit on his calendar within the portal or request further examinations. The patient will be notified. Further notes and comments. • Verification settings for the data entered to increase security. • When the physician enters new patient clinical values, the system compares them to the previous values.

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Figure 70 Participants at work on Scenario 4 (Access to patient clinical data for the doctor). Source: Federico De Luca Co-Design (June 2020)

7.7.4

ACTIVITY 4: SCENARIO 9

Build the Customer Journey • 20 mins SCENARIO NAME

Each group will have to build the user’s Customer Journey related to the fished scenario. It is important that each group highlights the critical points of each step.

GROUP

Ogni gruppo dovrà costruire la Customer Journey dell’utente realtiva allo scenario pescato. è importante che ogni gruppo evidenzi le criticità di ogni step.

USER ACTIONS

Figure 71 Customer Journey Map of Scenario 9 (Create awareness in the patient about his/her clinical condition). Source: Federico De Luca Co-Design (June 2020)

EMOTIONAL CURVE FACE TO FACE

DIGITAL

PAPER

PRODUCT SPACE

DOUBTS

The object in question is to create awareness in the patient about his/her clinical condition from the app. Hypothesis 1, the user accesses the summary report of their medical records. 1. The user can access the summary report of his medical records within the app. This summary can be viewed in an extended and simplified form. 2. The data shows the current values and

past values so that it is possible to compare them and see improvements or deterioration of the clinical picture. 3. The patient’s data are compared with the history of the individual’s past values and pathologies and the clinical picture of family members to prevent hereditary diseases. 4. The user’s clinical characteristics are analyzed to provide suggestions, relevant articles, or to facilitate conversa-

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Scan the QR Code to access the video session and comments. (Italian only).

tions with patients with similar characteristics to increase awareness on the subject. 5. Through smart devices, daily data are collected to analyze the user’s habits. Further notes and comments. • Verify the information shared by other patients to avoid spreading false news. • Optimize the customization of news and articles regarding the clinical situation of the user.

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Figure 72 Participants at work on Scenario 9 (Create awareness in the patient about his/her clinical condition). Source: Federico De Luca Co-Design (June 2020)

7.8

ACTIVITY 6: BUILD THE USER INTERFACE

Build the User Interface • 20 mins Each group will have to create with the templates the User Interface of the analyzed scenario. It is recommended to add details to the wireframe of the interactions.

SCENARIO NAME

GROUP

Ogni gruppo dovrà creare l’interfaccia utente dello scenario analizzato con i templates. Si raccomanda di aggiungere dettagli al wireframe delle interazioni.

NOTES

Figure 73 User Interface Template for smartphone (A3) Source: Federico De Luca Co-Design (June 2020)

Figure 74 Group A and B during the UI design phase of Scenario 1 and 9. Source: Federico De Luca Co-Design (June 2020)

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Interface study is the activity of designing the user interface (UI) of any computer system and software that interacts with the user through a screen. The man/machine interface is composed of the visual interface that appears on a screen and includes the system of physical elements with which the user interacts, such as keyboards, mice, panels. Why designers use it? After in-depth research on end-users, to understand the needs, the level of understanding, and the confidence of these technologies precisely, we start to sketch a draft of all the interface elements necessary for the action to be taken most naturally and. It is necessary to think about the spaces, the font sizes, the affordances of the buttons and clickable elements so that they self-communicate what action they allow to perform without the excessive use of textual support or assistance. â&#x20AC;˘ In the study of the interface, it is necessary to make choices that range from innovative proposals that propose new patterns and others that stick to the most common patterns and solutions in interaction design to allow everyone to use the tool without the risk of frustration and panic. â&#x20AC;˘ The interface also changes significantly through the graphic design designed around it, intending to increase the clarity of the information proposed pleasantly and understandably.

How does it work? The study of the interface is fundamental for the final product to be usable. When well designed, the interface allows users to perform operations in total safety and speed, characterizing the product and exponentially improving the serviceâ&#x20AC;&#x2122;s quality. What are the expected results? The study of the interface is presented through a presentation that involves several other activities, from the benchmark overview of the segment considered, to the first wireframe proposal up to the style guides document of the UI elements.263

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Each group had to create with the templates the User Interface of the analyzed scenario. It was recommended to add details to the wireframe of the interactions.

7.8.1

ACTIVITY 6: SCENARIO 1 1

Build the User Interface • 20 mins SCENARIO NAME

Each group will have to create with the templates the User Interface of the analyzed scenario. It is recommended to add details to the wireframe of the interactions.

GROUP

Ogni gruppo dovrà creare l’interfaccia utente dello scenario analizzato con i templates. Si raccomanda di aggiungere dettagli al wireframe delle interazioni.

NOTES

123-456 user code

Emergency

An ambulance is coming! Waiting time 7 mins 4km away loss of consciousness

Take me there

INSTRUCTIONS

Is he/she breathing?

Yes

Patient’s phone //////////

////////// //////////

Is he/she bleeding?

Source: Federico De Luca Co-Design (June 2020)

//////////

epilletic attack

Person in crisis at 50mt

STEP 1

Figure 75 User Interface Map of Scenario 1 (Managing an emergency from the application).

Yes

Rescuer-passenger phone

You are arrived. Is everything okay? Yes

Managing an emergency from the app. 1. The user has an illness and loses consciousness; the system detects the situation. 2. The app understands that something is wrong, initially a screen appears (with vibrations and sounds) with the image of the user unconscious and an identification code. In this way, if a passerby goes to rescue, it can identify who is sick and share the patient’s clinical data

with the rescue services with the code. 3. If nothing happens and the user is still unconscious after a while, an alert is notified to people in the vicinity who have WeChat: “a person at 50mt is not feeling well, do you want to help her? If the user confirms, the app guides the rescuer to the user. 4. The rescuer must confirm whether the user is all right and if he or she has fainted, call for help, and communicate the code.

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Scan the QR Code to access the video session and comments. (Italian only).

5. The interface shows the distance and time of arrival of the rescuer. 6. In the meantime, the interface asks questions about the condition of the unconscious patient to facilitate the nursing triage. 7. When the ambulance arrives, the app asks for confirmation of the rescue. Further notes and comments. â&#x20AC;˘ Better understand how the rescue notification works. â&#x20AC;˘ Improve triage functionality from the app to choose the hospital of reference and avoid overloading health care facilities.

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Figure 76 Participants at work on Scenario 1 (Managing an emergency from the application). Source: Federico De Luca Co-Design (June 2020)

7.8.2

ACTIVITY 6: SCENARIO 2 2

SCENARIO NAME

GROUP

Ogni gruppo dovrà creare l’interfaccia utente dello scenario analizzato con i templates. Si raccomanda di aggiungere dettagli al wireframe delle interazioni.

NOTES

Have you been well today?

More and more specific questions

Your symptoms are severe. I’ve located this doctor. Do I confirm appointment?

it’s time to take your medicine!

User Answers

Yes

Patient’s phone

Figure 77 User Interface Map of Scenario 2 (Management of a self-diagnosis from the application). Source: Federico De Luca Co-Design (June 2020)

The doctor’s close by, go get him/her. The doctor is far away, make videocall

Yes

Management of a self-diagnosis from the application. 1. Daily reminder activated by the user if he/she wants to do a daily checkup of his clinical condition collects data and parameters. 2. The daily checkup asks the user if he has been well during the day or had any health problems. 3. If the user answers that he has not been well, a WeChat virtual assistant with AI technology will ask more spe-

cific questions to understand the situation and suggest how to behave. E.g., go to a specialist doctor or hospital. 4. If the user considers it appropriate to follow the virtual assistant’s suggestions, he/she can confirm an appointment through the app, access more information, or get directions to the recommended location.

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Scan the QR Code to access the video session and comments. (Italian only).

Management of a self-diagnosis from the application for a patient with a chronic disease. 1. For chronic diseases, if the user has devices, such as the smart-box with a reminder function for medication, the system will integrate the information into the app. If the user does not have smart-devices for medicines, the app has a reminder function for medicines, with verification and measurement of the values to monitor the health status. E.g., measure blood glucose values for patients with diabetes. 2. Each week the app provides a health status report that the user can share with their doctor or guardian. 3. At the end of the consultation with the virtual assistant, the system assesses the symptoms, proposing solutions, such as consultation with a specialized physician. 4. If the user does not confirm the appointment, the application asks if the user is interested in further information or support. 5. If the user confirms the appointment, the app will ask if the user prefers to go in person or make a remote visit by video call. Further notes and comments. â&#x20AC;˘ Consider how to redirect the assistantâ&#x20AC;&#x2122;s suggestions in case there is a difficulty for the user to understand the questions.

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Figure 78 Participants at work on Scenario 2 (Management of a self-diagnosis from the application). Source: Federico De Luca Co-Design (June 2020)

7.8.3

ACTIVITY 6: SCENARIO 4 4

SCENARIO NAME

GROUP

Ogni gruppo dovrà creare l’interfaccia utente dello scenario analizzato con i templates. Si raccomanda di aggiungere dettagli al wireframe delle interazioni.

NOTES

Already pre-set list with patient choices

calendar with appointments

May

Info appointment

To do list (visits) X

Historical visits/comments

Doctor’s web portal

Figure 79 User Interface Map of Scenario 4 (Access to patient clinical data for the doctor). Source: Federico De Luca Co-Design (June 2020)

11/06 • 17.30

General Info diseases/allergies

Enter

Comments

1. The doctor’s waiting for all the results, then schedule a new appointment.

June

4 Next visit

Add comments

Add new visits

Enter prescriptions

Enter signature

Send to: Send to the system Consult the patient

Suggestions of the system to the doctor

#emochrome test # glycaemia

New appointment

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Scan the QR Code to access the video session and comments. (Italian only).

Access to patient clinical data for the doctor 1. The doctor enters his/her portal and through the digital calendar, displays the notification of the appointment with the patient. 2. The physician displays the user’s profile and the information that the patient has agreed to share remotely with the physician. 3. The physician can view the history of examinations and visits made by the patient, comments left by other specialists and prescriptions in progress. 4. The physician can view the “Checklist” of the current visit in case the patient has requested a specific visit in advance. 5. If additional examinations or specialist examinations are required, the doctor can enter them into the system to send a request to the patient in his portal. 6. If the doctor adds new examinations to be done, the patient will receive a request via the app. When the patient performs the examinations, the app will send an automatic confirmation to the doctor of the completion. 7. If the medical visit is completed without further examination, the doctor proceeds by uploading a report of the visit to the user portal. In this way, the document can be accessed and archived by the patient. The user can confirm receipt of the document through a digital signature.

8. The physician can add new prescriptions, new examinations to be carried out, and advice for the patient or modify previous prescriptions if deemed appropriate. Further notes and comments. • The transparency and accessibility of the system can increase patients’ confidence in the information entered by the doctor. • The addition of notes, monitoring, and modification of previous prescriptions can ensure better patient care control and make the service more efficient. • The evaluation of doctors in the system by users based on their experiences during visits helps improve quality, understand, and solve problems affecting the health care system.

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ACTIVITY 6: SCENARIO 9

7.8.4

Build the User Interface • 20 mins SCENARIO NAME

Each group will have to create with the templates the User Interface of the analyzed scenario. It is recommended to add details to the wireframe of the interactions.

GROUP

Ogni gruppo dovrà creare l’interfaccia utente dello scenario analizzato con i templates. Si raccomanda di aggiungere dettagli al wireframe delle interazioni.

family tree/family management NOTES

Anonymous

11/06

experiences

Healthy living Positive habits Suggestions Patient’s phone

1259***

Last tests

* order timeline by disease

+ appointments

Privacy

Figure 80 User Interface Map of Scenario 9 (Create awareness in the patient about his/her clinical condition). Source: Federico De Luca Co-Design (June 2020)

May 2020 X

Download info

i i

e.g. documents for the gym

OK!

i Check-up

Suggestions Info

Tasks

Create awareness in the patient about his/ her clinical condition. 1. The patient enters their portal through a double identity verification with facial recognition. 2. Once entered, the patient accesses his/ her profile. This page summarizes all the data and clinical values of the user sorted chronologically and so that the user can have a clear reading of his clinical situation.

3. The user can view all the examinations made and can go into detail to retrieve the values and share them with his doctor or another specialist. 4. The interface allows the user to see past clinical history and also appointments and examinations scheduled or suggested. 5. The user, through his/her personal area, can also manage the relatives in charge (minor children or elderly parents, with prior consent) or within his/

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Scan the QR Code to access the video session and comments. (Italian only).

her family tree. This functionality allows the user to analyze similar data to prevent genetic predisposition diseases. Besides, it allows the user to keep the clinical picture of the relatives under control. 6. The user can download reports, or specific examinations carried out for sports or work use. 7. Through the analysis of patient clinical data (EHR), the system can provide specific information and customize suggested items according to the clinical picture and to promote a healthier lifestyle.

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Figure 81 Participants at work on Scenario 9 (Create awareness in the patient about his/her clinical condition). Source: Federico De Luca Co-Design (June 2020)

7.8

CONCLUSIONS After a day of collective activities, the participants at the end of the CoDesign show the symbolic reward.

Figure 82, 83 At the top: Group A and B holding the gift. On the left: Rewards. Source: Federico De Luca Co-Design (June 2020)

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The Co-Design session provided excellent ideas for design, experience improvement, and future implementation. The participants showed significant involvement in the activities and the time balance proved to be correct in order not to overburden the creative sessions and to produce quality results. Participants received a symbolic reward for the time spent for the session. Participants developed four scenarios to be implemented in the application and the system. Some of these have a notable level of detail; others remained more generic and must be thoroughly reviewed. Further notes and comments. During some activities, such as the Customer Journey Map, participants did not respect the proposed template, but in many cases, distorted it and used it differently. Therefore, it was essential to have a moment of discussion to clarify some aspects of the map that would otherwise have been difficult to understand. This episode highlighted the importance of detail in the tools concerning the objective to be achieved, in order to avoid misunderstandings and extra tidying up work.

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CHAPTER 8 8

DEVELOPMENT INTRODUCTION

Through Co-Design, it was possible to obtain design references and layouts to develop the prototype. This chapter illustrates the functioning of the interfaces and the different functionalities implemented in the prototype. Prototypes are often used in the final, testing phase in a Design Thinking process in order to determine how users behave with the prototype, to reveal new solutions to problems, or to find out whether or not the implemented solutions have been successful. The results generated from these tests are then used to redefine one or more

8.1

of the problems established in the earlier phases of the project, and to build a more robust understanding of the problems users may face when interacting with the product in the intended environment. For the validation of the prototype with users, an online testing session was organized with users and health experts to highlight possible critical issues and improve interactions. Thanks to these suggestions, it was possible to make changes to the interface and functionality to improve user experience.

APP INTEGRATION WIREFRAME

The project intervention concerned the implementation of the â&#x20AC;&#x153;My Areaâ&#x20AC;? section within the WeChat Health app and the improvement of the interface. In particular, compared to the original application, the menu is ergonomic and simple. The implemented functionalities concern the scenarios analyzed during the Co-Design. The four sections designed concern the emergency management, self-diagnosis, EHR management and privacy settings, and data access permissions by health professionals.

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5.3

Emergency

Self-Diagnosis

EHR Management

Privacy Setting and Data Consensus

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8.2

MY AREA

physician consensus)

Personalized articles (based on the patient’s medical history)

Patient Summary (Contains all the patient’s clinical information and EHRs)

Insurance Card (Digital insurance card with which to make electronic recognition and payments)

Self-Diagnosis (Do a preliminary clinical triage and be directed to the most suitable facility)

Emergency (Multi-level rescue with the possibility to share patient’s EHR with the ambulance)

Old version

New version

Compared to the previous version, the menu is user-friendly and answer the user’s needs. Through the Profiles and Settings function, the users can view the profiles matched to their account and set the privacy clauses. A sliding menu proposes articles and information selected for the users according to their clinical profile. This function customizes the information and sensitizes the users to improve their clinical knowledge. The Patient Summary contains the user’s clinical information, history of examinations performed, prescriptions. The medication functionality enables

users to consult their current medication prescriptions. With the Bookings function, users can register online to the hospital and manage their medical tests as needed. With the Insurance Card function, users have their electronic insurance card with them. The My Articles section enables users to view the saved and proposed articles. The Self-Diagnosis function allows users to make a symptomatological assessment. Through the Emergency section, the user can contact the rescue services and directly perform the first triage from the app.

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8.3

EMERGENCY MANAGEMENT

Ambulance call

Hospital choice

Through this section, users can manage emergencies for themselves and others. The system consists of different levels depending on the severity of the crisis. If the emergency is severe, the system will contact the emergency services, and the sick user will be rescued. If the person who contacts the emergency services is the sick person, the user can share the Patient Summary with the ambulance so that the rescuers know his/her medical picture and receive more appropriate treatment. This option is essential if users have chronic illnesses or drug allergies.

Type of sickness/injury

If the user can move around, on the other hand, an evaluation questionnaire of his/ her condition will allow the user to receive guidance on the situation and assess which hospital to go. If the problem is minor, a lower category hospital will be suggested to the user not to saturate the higher category hospitals. In any case, the user can always choose the hospital to go to by setting the filters.

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8.4

PATIENT SUMMARY AND EHR MANAGEMENT

EHR Menu

Patient Summary

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List of EHR

List of personal doctors

Data sharing

This function allows users to view their clinical data in a user-friendly way and a short version. The user can also access data from devices connected with the app, such as smartwatches and medical devices, such as devices to detect the oxygen level in the blood. By selecting the â&#x20AC;&#x153;My EHRâ&#x20AC;? area, the user can access the entire clinical history. Doctors and laboratories automatically upload the data to the user profile. If the data are not available in digital format, the user can upload them autonomously by scanning the paper document. The AI technology will allow an

intelligent reading of the paper document, extrapolating the data and classifying them according to category. This process is possible if the reference model for the scanned documents is present in the system database. Otherwise, the user can upload a PDF document. All reports can be shared with the userâ&#x20AC;&#x2122;s physician or specialists who request them if they are not authorized to read the data. In this way, the users always have their clinical data with them, even when moving around the country.

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8.5

PRIVACY SETTINGS AND DATA CONSENSUS

Menu/Settings

Settings

Through this menu, the user can view the profiles of family members of whom he/ she is the supervisor or who has authorized the management of the personal medical record. In this way, the user can also view and manage the health information of minor family members or those with reduced mobility. From the menu, the user can also see the doctors who have access to his/her EHR. By selecting the physician, the user can manage the settings for access to data by the physician for each category. Through a notification, the user can receive a request for access to the treating physician

Data consensus

in case he needs to view some specific data. The permission can be revoked at any time.

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8.6

SELF-DIAGNOSIS

Symptoms check

Explanation and symptoms

If the user has an illness and wants to deepen their state of health without going straight to the hospital, they can access this function. Self-diagnosis allows the user, through a questionnaire, to evaluate their symptoms and propose the first diagnosis. Artificial Intelligence is at the basis of virtual assistance and enables the system to cross-reference the information with patient data to formulate a more accurate diagnosis. The patient obtains information useful to deepen his knowledge of the symptoms he presents. Once informed, the assistant directs the user towards individual

Preliminary diagnosis

choices to be made. The user can choose whether to continue the research through articles or forums with users with similar symptoms, consult a specialist doctor, or go to the hospital. The system will suggest the hospital according to the severity of the pathology and the hospital score left by users by type of specialization.

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8.7

DOCTOR'S ACCESS TO THE PATIENT'S DATA Landing page This is the main screen that the doctors see when using the software. It is possible to see upcoming appointments and check what’s planned on other days of the month.

Appointment info (pop-up) - From this pop-up, the doctors have a quick overview of the upcoming appointments, they can quickly call some actions (like calling the patient or see they are EHR) or open the patient’s “full page” which has more detailed info.

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Submitted data From this screen, the doctors can see what the patient has answered in the â&#x20AC;&#x153;self-diagnosisâ&#x20AC;? area in the WeChat health app.

Ask for permission - Not every detail of the patient is shared with the doctor. From this page, the doctors can check which data or information is shared with them. The doctors can ask for permission by submitting a request. The patient can then accept or not.

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Complete EHR - From this page, doctors can see the patient’s whole medical history. The information is divided to help the professionals to find what they need without confusion. The patient has to grant permission for specific areas.

The doctor enters his portal and, through the digital calendar, displays appointments with patients. The physician displays the user’s profile and information that the patient has agreed to share remotely with the physician. Through the portal, the physician can view the history of examinations and visits made by the patient, comments left by other specialists and prescriptions in progress. The physician can view the “Checklist” of the current examination if the patient has requested a specific exam in advance. If further tests or specialist visits are required, the doctor can enter them into the system to send a request to the patient in his portal.

If the doctor adds new examinations to be performed, the patient will receive a request via the app. When the patient performs the tests, the app will send the doctor an automatic confirmation that the examinations have been completed. If the examination is completed without further tests, the physician proceeds by uploading a report of the test to the user portal. This allows the patient to access and archive the document. The doctor can add new prescriptions, new examinations to be carried out, and advice for the patient or change previous medical prescriptions if deems it appropriate.

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8.8

TESTING PHASE

When designers want to determine and understand exactly how users will interact with a product, the most obvious method is to test how the users interact with the product. It would be foolhardy and pointless to produce a finished product for the users to test. Instead, designers can provide simple, scaled-down versions of their products, which can then be used to observe, record, judge, and measure user performance levels based on specific elements, or the usersâ&#x20AC;&#x2122; general behavior, interactions, and reactions to the overall design. These earlier versions are known as prototypes; they are not necessarily in the medium of the finished product as this may not be cost-effective in terms of time or money. Prototyping methods are generally divided into two separate categories: low- and high-fidelity prototyping. In this testing session, it was used as a high-fidelity prototype. These kinds of prototypes look and operate closer to the finished product. For example, an early version of a software system developed using a design program such as Sketch or Adobe Illustrator is highfi compared to a paper prototype. Prototyping can be a quick and effective way of bringing ideas to life. A sample of targeted users or evaluators can then be observed and tested, and their opinions can be used to make improvements during an iterative design process.264

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8.8.1

TESTING WITH USERS This evaluation session required the participation of two types of users: health professionals and reference users.

PROFESSIONALS

Yang Xuesong Prof. in Gastroenterology Peking University International Hospital, Beijing

USERS

Li Shuyue

Yuyuan Chen

Out-of-town student and Graphic Designer with experience in interface design for EHR

UI and UX Designer at Digital to Asia Srl (Italian-Chinese Company)

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8.8.2

TESTING PROGRAM

User Evaluation â&#x20AC;˘ WeChat Health Integrations

Participants in the evaluation are asked to analyze the integrations made to the app, indicating any project opportunities, limitations of the app, implementation proposals. The review can also be done through the use of voice notes for each evaluation category. 1. General evaluation of the app 1.1 Interface evaluation and comments 1.2 Evaluation of the effectiveness of the concept and comments 2. Evaluation by functionalityand comments 2.1 Emergency Assessment and comments 2.2 Self-Diagnosis Evaluation and comments 2.3 Patient Summary and My EHR Evaluation and comments 2.4 Privacy settings and data consensus evaluation and comments 3. Evaluation concerning the objective of putting the user at the center of the system and making the experience user-friendly. 3.1 Reflections, observations, critical aspects and to be implemented

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8.8.3

FEEDBACKS

Menu My Area interface A comparison with users showed that the interface menu is intuitive and should simplify some aspects, such as icons. Besides, some features, such as doctor reservations are only possible for private facilities. Hence, the interface should split the appointment reservation for the online registration in the hospital to avoid queues. Users have found the My Articles feature unnecessary, prefer the messaging button in the drop-down menu, and recommend changing the red color of the Emergency feature, as it is easy to press it involuntarily.

all the patient summary information. In the My EHR section, users suggested using colors other than red, as they could be assimilated with the emergency section.

Emergency Management interface This function has attracted the attention of users as it represents a novelty. However, there are a few things to improve the functionality and the interface. Users have suggested improving the interface for emergency assessment and removing the doctor’s reservation, as this option is difficult to implement in reality.

Self-diagnosis interface The expert suggested improving the interface for symptom assessment and recommended using the Mayo Clinic online diagnostic service as a case study (https:// www.mayoclinic.org/).

Patient Summary interface Users have suggested that the interface should be improved by making the screen display more user-relevant. The practitioner suggested making changes in user values more evident, simplifying the presentation of data, and indicating the patient’s current prescriptions. The expert also suggested classifying the information according to the department of expertise, avoiding mixing

Privacy Settings and Consensus interface In this section, the practitioner pointed out that it is challenging for the user to interact with the same doctor during different visits. So she suggested keeping the possibility for the user to see who the doctor treated him/her but to extend the permission to access his data to the whole reference department/healthcare facility.

Doctor’s access to the patient’s data For this section, the expert recommended the insertion of shortcuts to visualize the patient’s medical history and to improve the management of the visit schedule. This system could help patients improve their knowledge and management of their medical records, and doctors in the constant monitoring of their patients’ clinical situation. The expert advised to focus more on Patient Summary and Emergency Management.

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The feedbacks allowed to make changes to the prototype, to optimize its functionality and interaction.

Figure 84 Evaluation of the My Area interface. Source: Li Shuyue Evaluation Test (July 2020)

Figure 85 Evaluation of the Patient Summary and EHR management interface. Source: Li Shuyue Evaluation Test (July 2020)

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Figure 86 Implemented version of interfaces. Source: Federico De Luca Evaluation Test (July 2020)

Settings

Patient Summary

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Home

8.9

CONCLUSIONS

This session allowed to improve the user experience and the user interface of the service and obtain essential feedback on the potential and limits of the implementation. Given the details of the prototype, it is appropriate to consider the benefits and risks of prototyping in more detail. The benefits of high-fidelity prototyping are engaging. The stakeholders can instantly see their vision realized and be able to judge how well it meets their expectations, wants, and needs and the evaluators can gather information with a high level of validity and applicability. The closer the prototype is to the finished product, the more confidence the design team will have in how people will respond to, interact with, and perceive the design. High-fidelity prototyping risks are the time needed to produce than low-fi prototypes; when testing prototypes, test users are more inclined to focus and comment on superficial characteristics, as opposed to the content. Software prototypes may give test users a false impression of how good the finished article may be. Besides, making changes to prototypes can take a long time, thus delaying the entire project in the process.

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CHAPTER 9 9

FINAL CONSIDERATIONS

The preliminary research for the design was extensive and took up most of the time. Finding information and conducting interviews in China was not easy as there are specific procedures to follow to obtain permits, and often the most up-to-date scientific material is only available in Chinese. However, it was still possible to conduct interviews with health experts and collaborate with Chinese speakers to obtain clarification and explanations. Another factor contributing to the slowdown in project development was the Covid19 pandemic, which interrupted the possibility of interviewing people physically. However, digital media allowed continuing the research and interview experts and users at a distance. The project translates the best experience of existing case studies on different topics (security, EHR, service design for healthcare) into a service-system adapted to the Chinese context. The project does not radically solve all the problems highlighted in the literature review but represents the first step to improve the whole system. As also emerged from the interviews, this type of project requires a step-by-step and incremental implementation because, to be interoperable and reliable, the system must be fed with information. For this reason, it is necessary to imagine the development in microphases, in which, for example, the archive and management of EHRs concerning a specific pathology (diabetes,

for example) are implemented, and then the classification is extended. This process allows better control of the development and facilitates intervention and modification in progress in case problems arise. This case study shows how service design can support the development of HIS and EHRs by designing for and with stakeholders through a human-centered and participatory approach. The holistic and visual nature of service design also fostered the interaction with users and facilitated iterations of initial concepts. Considering the increasing complexity of Health Information Systems and the importance of user involvement, this case study reveals that incorporating service design can significantly contribute to successful HIS development and implementation.

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This chapter concludes the design research and highlights the criticalities and potentialities found during the research phases.

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ACKNOWLEDGMENTS I have been anxious to write this paragraph since the beginning of the research. I started my research in March 2019, and during all this time, I went through alternating moments of euphoria and deep despair. The most frequently asked questions to me were: “It is already difficult to research in chinese. Why does it on EHR?”. When Covid19 came along, it became even more discouraging. However, thanks to my determination and the support of the people around me, I overcame the most critical obstacles. So it becomes essential to thank some people. First of all, I would like to thank my family for their support and ability to make me feel that everything is possible. With the same importance, I would like to thank my supervisors Prof. Daniela Sangiorgi and Prof. Avril Accolla, for guiding me along the research and design path. The project’s complexity required my Chinese colleagues and friends to find the information in English. For this reason, I would like to thank Yuyuan Chen for being a true friend and a great personal translator; Prof. Yang Xuesong and Pakwan ( ) for their kindness in helping me prototype the concept at a distance; Ziquan Wang for being a great motivator and helping me during the field research to interface with Chinese citizens; Finn Feng for being a great discovery in China; Emma Yang for involving me in all the activities of Tongji University and helping me to realize my projects. I want to thank my friends in Milan, who helped me with their questions and observations in the project phases. Thanks to Mohamad Bey for being a special friend and colleague; Salvo Cuntrò and Luca Sorrentino for having always had a word of comfort during the writing of the thesis during the pandemic; Benedetta Beltrami, Martina Curcio, Federico Chiusaroli, Ginevra Romagnoli, Martina Monelli, Daniel Dinerman, Zoran Trevisan for having assisted, helped and stimulated me during all the project phases. A special thanks to my neighbor, Beatrice Avallone, and her husband Salvatore, who took care of me during the quarantine and prepared delicious lunches every day. I thank all the people who have been close to me and have contributed indirectly to the realization of this project.

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Ho trattenuto l’ansia di scrivere questo paragrafo fin dall’inzio della ricerca. Ho iniziato la mia ricerca a Marzo del 2019 e durante tutto questo tempo ho attraversato momenti alternati di euforia e profondo sconforto. Le domande più frequenti a me stesso sono state: “è già difficile fare ricerca in cinese. Perché farla sugli EHR?”. Quando poi è arrivato il Covid19 è diventato tutto ancora più sconfortante. Tuttavia grazie alla mia determinazione e al supporto delle persone attorno a me, sono riuscito a superare gli ostacoli più importanti. Diventa quindi fondamentale ringraziare alcune persone. Prima di tutto vorrei ringraziare la mia famiglia per il supporto e la capacità di farmi sentire possibile di tutto. Con la stessa importanza, vorrei ringraziare le mie relatrici la Prof. Daniela Sangiorgi e la Prof. Avril Accolla per avermi saputo guidare lungo il percorso di ricerca e quello progettuale. La complessità del progetto ha richiesto l’aiuto dei miei colleghi e amici cinesi per reperire le informazioni in lingua inglese. Per questo motivo vorrei ringraziare Yuyuan Chen per essere una vera amica e oltre che un ottimo traduttore personale; la Professoressa Yang Xuesong e Pakwan ( ) per la loro gentilezza nell’aiutarmi a prototipare il concept a distanza; Ziquan Wang per essere stato un grande motivatore e avermi aiutato durante la field research a interfacciarmi con i cittadini cinesi; Finn Feng per essere stata una gande scoperta in Cina; Emma Yang per avermi coinvolto in tutte le attività della Tongji University e avermi aiutato a realizzare i miei progetti. Ringrazio i miei amici che a Milano mi hanno aiutato nelle fasi progettuali con le loro domande e le loro osservazioni. Grazie quindi a Mohamad Bey per essere un amico e collega speciale; Salvo Cuntrò e Luca Sorrentino per avere avuto sempre una parola di conforto durante la scrittura della tesi durante la pandemia; Benedetta Beltrami, Martina Curcio, Federico Chiusaroli, Ginevra Romagnoli, Martina Monelli, Daniel Dinerman, Zoran Trevisan per avermi assistito, aiutato e stimolato durante tutte le fasi progettuali. Un grazie speciale alla mia vicina di casa Beatrice Avallone e suo marito Salvatore, che si sono presi cura di me durante la quarantena preparandomi deliziosi pranzetti ogni giorno. Ringrazio tutte le persone che mi sono state vicine e hanno contribuito indirettamente alla realizzazione di questo progetto.

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SCHOOL OF DESIGN MASTER DEGREE THESIS: Product Service System Design