Stef Liu MAID Research Paper

Biodata Futures When personal data management meets data-driven innovation

Stephanie Liu

Biodata Futures

Acknowledgement This paper is a presentation of the extensive research conducted during the final year of my MA programme at Central Saint Martins (CSM). The journey has been personal, complex and often disorienting; indeed, one which I could not have navigated successfully on my own without the constant support around me.

I would like to take this opportunity to express my deepest appreciation for the staff at CSM: to Nick Rhodes, Matt Malpass and Ralph Ball for their constant tutoring, critiquing and inspiration; to Mark Simpkins and Nigel Burgess for their technical support; to Michael Burton and Michiko Nitta for their enthusiastic mentoring and intriguing conversations; and to all the workshop technicians who guided me through the design process.

I would also like to extend my gratitude to Aubrey de Grey and Michael Rae of SENS Research Foundation; Shifath Nafis of Accenture; Kevin McCullough and Vanessa Mayneris of Plan; Vinay Gupta; William Nash; Dr Sheraz Majeed; and all other experts who have kindly offered me their time and extensive industry knowledge. Thanks to the team at Virtual Futures who have inspired me to think outside of the box; to alumnus Sarah Gold and the team behind Enigma for indirectly influencing the development of my project; and perhaps more importantly to my classmates who have been continuously supportive in offering a helping hand in times of need.

Last but not least, I would like to thank my family, friends and loved ones, for being my backbone and keeping me sane whenever I hit a dead end.

3

Biodata Futures

Abstract The development of new technologies proposes innovative solutions that promise to bring humanity forward, but inevitably introduces new ethical and moral dilemmas that we must collectively address and tackle along the way.

This design project explores the future of personal biodata through the investigation of current trends and concerns regarding the future of healthcare, the quantified self, data ownership and data exchange.

The project adopts speculative design strategies to paint a picture of a near future context, one in which personal biodata is owned and managed by the individual. Through a service platform, individuals have the power to share and monetise their data in exchange for direct services and rewards, thus promoting a democratic, circular data ecosystem that improves the lives of individuals and accelerates biomedical research.

The project has two main components. The first component introduces Infinity, a blockchain-enabled business as the service provider which has been constructed in light of current trends and commercial proposals. The second component utilises three personas and fictional scenarios to assess how such service could lead to misuse or unexpected consequences when human behaviour comes into the mix.

The aim of the project is to question the ethical, political and economic implications of innovation, to stimulate discussion amongst the public, and inform services and policies concerning personal data management of the not so distant future.

4

Table of Contents Acknowledgements Abstract Introduction

6

The Future of Healthcare 7 The Future of Quantified Self (Life-logging)

11

The Future of Data Ownership

17

The Future of Data Exchange

19

Speculative Design and Strategy

22

Conclusion

24

Appendix Bibliography

25 26

Biodata Futures

Introduction Every day, we create 2.5 quintillion bytes of data. To put that into perspective, 90 percent of the data in the world has been created in the last two years alone – and with new devices, sensors and technologies emerging, the data growth rate will likely accelerate even more. (IBM Marketing Cloud, 2016)

Do you know the value of your personal biodata? How can we incentivise data collection and exchange without risk?

In this paper, I will examine and unpack the following four main trends that are shaping the healthcare and personal data world today and into the future:

The world of personal information is changing fast. Every day, we produce copious amounts of data actively and passively. As highlighted in an IBM Marketing Cloud study: 10 Marketing Trends for 2017, the ease and low costs of collecting, storing, using and analysing data have led to new opportunities within our economy, most importantly accelerating data-driven innovation.

The Future of Healthcare: The move towards an accessible, data-driven and preventative healthcare system

In particular, personal longitudinal data, made possible by smartphones, the internet of things and selfquantification tools, is extremely valuable to biotech and healthcare industries. As Kevin Kelly states in his book The Inevitable (2016), the data accumulated through the self-tracking and life-logging of every aspect of our health could not only serve as a personal base upon which to diagnose and treat, but also bring about change to public health as a whole and contribute significantly to in-depth biomedical research. (Kelly, 2016)

The Future of Data Ownership The shift in data ownership in light of recent events and the General Data Protection Regulation (GDPR)

This type of big data analysis relies on large numbers of contributors who are willing to submit their health and biodata anonymously. The first questions we must ask are ‘How can we incentivise individuals to manage and share their personal health data actively?’ and ‘What role will technology play to make this process more ubiquitous and efficient?’

Furthermore, vague privacy agreements and outdated policies and practices have led to the misuse of personal data, reducing consumer confidence in non-profit and for-profit data use. How will shifts in policy affect or encourage transparency in data sharing? How can emerging technologies facilitate the exchange of data and eliminate the need for trust?

6

The Future of the Quantified Self Innovation in tools and services that encourage self-quantification and life-logging

The Future of Data Exchange Blockchain and Distributed Ledger Technology enabling new ways to exchange and monetise data.

These trends provide the context and reason for the platform proposed in the first component of my project – a new Personal Information Management Service (PIMS) that will help individuals collect, control, and benefit from their own personal biodata.

1 The Future of Healthcare

Biodata Futures

1 The Future of Healthcare Healthcare has long been just on the edge of massive change and is one of trend reporters and futurists’ favourite subjects for predictions. While looking at the current state of the NHS, we no doubt agree that change is urgently needed in terms of how we prevent, diagnose, and cure diseases.

Medical advancements have greatly increased our chances of living a longer life, but an ageing population today means that more are suffering from chronic lifestyle conditions that require constant medication and attention. ‘It’s estimated that 70 per cent of the NHS budget is spent on long-term conditions, and this will only increase if we don’t support people to stay healthy’, says Tim Horton, associate director at the Health Foundation, UK (Coleman, 2017).

In terms of future healthcare technologies and innovations, the focus of healthcare shifts from treating illness to sustaining wellness. An updated model of value-based healthcare (The Economist Intelligence Unit, 2016) also calls for higher accessibility and affordability of services, and better interoperability between service providers.

Accessibility The most pressing issue today for the current global health-delivery system is how to make healthcare accessible to everyone and everywhere at any time. It is expected that in 2020, global healthcare spending will reach $8.7 trillion dollars (Deloitte, 2017), yet even in the richest countries, healthcare is becoming unaffordable at

Figure 1: Babylon Health Mobile Application 8

an individual level, sometimes too inconvenient and often with waiting times that make it not readily accessible.

For the NHS, implementing in-person free-at-point-of delivery healthcare to all UK residents is an applaudable but challenging task. Health Secretary Jeremy Hunt points out that the UK spends more on average than rich countries do on healthcare (BBC Today, 2017), yet resources are still incredibly limited, as doctors are being overworked and patients continually having long waiting times. More and more efforts are focused on virtual diagnosis, or telemedicine, to alleviate the strain on clinics and hospitals.

Over the past decade, telehealth advancements have improved tremendously, but adoption rates have not been significantly high, as video consultations seem less reliable and are not significantly cheaper than in-person visits. On a fundamental level, what individuals want from healthcare services is to feel at ease, educated about their health, and engaged with their physician if and when it’s necessary (Dr Goyal, 2018). The future of telemedicine should consist of streamlining the process of diagnosis, health assessment and treatment by replacing doctors with artificial intelligence systems that can accurately do what doctors do, thereby reducing cost and time.

Biodata Futures

London based digital healthcare company Babylon founded by former investment banker Ali Parsa, is seeking to disrupt the UK healthcare industry through its AI powered app Babylon Health (fig. 1). Through a series of questions and answers, the app diagnoses the user and connects them with a GP via a 24- hour live video service if further discussion is required. The app has attracted 575,000 UK users so far and is continuously growing by the day. Through the ancillary app Babyl, Babylon also provides a country wide GP service in Rwanda. Recently CEO Ali Parsa has claimed that the company has formed a partnership with China’s Tencent to deliver its digital healthcare services in China. 10 other countries, including Saudi Arabia, are also in the plan. (Parsa, 2018) Interoperability In healthcare, interoperability is the ability of healthcare information systems to work together and share information within and across organisational boundaries.

The implementation of such a platform is crucial, as it will enable the nation and its stakeholder organisations to take a major step forward in efforts to improve the quality, safety, and efficiency of care (Glaser, 2011).

For decades, national initiatives across the borders have worked on the interoperability of electronic health records (HER), however, the success rate has been low, and

scalability is restricted due to many complex reasons including the limitation of resources and conflict of interests.

In 2012, the UK coalition government outlined plans for a new digital strategy and, in 2014, the Department of Health put forward an updated digital plan designed to work alongside the NHS five year forward view (NHS, 2014). One of its key topics is interoperability. The NHS hopes to achieve full interoperability by 2020, but all medical records should be digitally accessible by medical professionals in acute settings by 2018.

As of May 2017, NHS organisations across Surrey have begun testing Patients Know Best, a patientcontrolled personal health record technology to allow clinicians to view a single digital care record across four NHS trusts, GPs and four clinical commissioning group areas (Stevens, 2017). The six-month goal was that clinicians working in Surrey would be able to see a shared integrated record from all the different health organisations using shared record technology supplied

by Patients Know Best. Once healthcare professionals have fully adopted the shared Patients Know Best record, the next step will be to extend it to patients.

The initiative is expected to eventually roll-out in North-West London and further at a national scale.

Figure 2: Patients Know Best Web Portal 9

Biodata Futures

Of all industries, insurance has a unique opportunity to align its commercial interests with preventive behaviours. This is because insurers, along with public services, can directly monetise more desirable individual behaviours as healthier or safer individual outcomes and lower claims costs, which can be translated into lowerpriced premiums for the consumer (Gore et al., 2017).

Figure 3: Bupa Health Insurance Rewards

Preventative and Patient-Centred Care When it was founded, the NHS’s main challenge was fighting infectious diseases, but now the challenge is caring for an ageing population. When addressing the importance of national health policies, the World Health Organization criticises ‘fragmented health systems’ and points out that the mismatch between the performance of these systems and ‘rising expectations of society is becoming a cause of concern and internal pressure for health authorities and political leaders’ (WHO, 2018).

To overcome these challenges and meet the current demands of society, healthcare needs to shift from being acute and reactive to being preventative and proactive.

The new system, however, cannot operate solely on the efforts of technology and professionals alone – it comes down to the responsibility and participation of individuals themselves. ‘People need to take better care of their health; they need to exercise more, watch their diet, stop smoking and drink in moderation. If people were healthy, there would be less demand on the system’ (The Economist Intelligence Unit, 2016) In fact, The Patient Will See You Now (2015) author and Cardiologist, Eric Topol, suggests patients who are actively involved in their own care can reduce about 17% financial burden on the healthcare system. ‘The most underutilized resource in all of healthcare is the patient’ (Topol, 2015).

Incentives are key to getting patients to engage with their own health. ‘Without incentives individuals usually participate in health behaviours about ten percent of the 10

time’, says Michael G. Dermer, Chief Incentive Officer of Welltok (Nosta, 2014). Apart from platforms such as Patients Know Best, which are enabling patients to take an active role in their own healthcare through the power of technology, the private sector will most likely be leading the way in preventative health to bring about behavioural changes by incentivising individuals through rewards or social engagement.

Bupa (fig. 3), a leading personal and company health insurance company, rewards its members by taking money off the things that can keep them healthy such as new trainers and gym membership. Corporate members also receive extra deals ranging from food and entertainment to home and travel. Another more direct behavioural reward is through fitness tracking. Customers of Oscar Insurance (Oscar Website) can download an app to monitor their daily steps. For every day the customer reaches their goal, they can receive $1. Companies are also giving out Fitbits to their employees as part of corporate wellness programs, holding individual and team competitions for the most steps taken in the hopes that gamification can inspire individuals to become more active.

While the public health sector is putting effort into preventative educational programs, they must also work with private industries to find a way to truly engage users and create sustained healthy behaviours.

2 The Future of the Quantified-Self (Life logging)

Biodata Futures

2 The Future of the Quantified-Self (Life logging) The quantified-self (QS) movement contributes significantly to patient-led preventative and personalised care.

The concept of QS or life-logging has been around since the 1970s, however, the past 10 years truly saw the boom in the QS market with more than 3 billion USD in revenue for health and fitness trackers sold worldwide in 2015 alone (Statista, 2015). People flocked towards the collection, analysis and comparison of data about sleep habits, calorie intake, mood, disease symptoms and other personal states through a combination of medical devices, wearable products and mobile health applications.

As of recent years, the ‘trackers’ market seems to have reduced in growth, as many products fail to answer the ‘so-what’ question. ‘Dropout from device usage is a serious problem for the industry’, said Gartner research director Rachel McIntyre (Gartner, 2016). The most central criticism is that the features and functionality of selfquantifying tools have not been able to offer a compelling enough value proposition for the user to engage in the activity long term.

Although the adoption rate has not been as high as predicted for the wearables market, the quantified-self movement and mobile health industry will continue to be re-invented and strengthened through new technological innovations around sensors and data analysis. Single function wristbands will be a thing of the past; the future of the quantified self depends on efficiency, affordability, ubiquity, and actionable insights.

Efficiency The democratisation of medical procedures without forgoing accuracy of measurements is key to increasing efficiency of health-related services. The internet has made it incredibly easy to connect consumers with private healthcare providers today, allowing startups like Thriva to offer home finger-prick blood tests that give you reliable results within 48 hours, regardless of whether you have health concerns or are just curious about your health status.

Upon sending the kit with your blood back to Thriva (Fig. 4), a report will be generated based on the results, giving detailed information about the user’s cholesterol 12

levels, kidney function, energy level and deficiencies. A doctor will write a report for you based on the results, advising of any implications or necessary lifestyle changes.

Affordability Genomic sequencing is a method used to determine the exact sequence of a certain length of DNA to reveal detailed insights about an individual’s conditions. The first sequencing of the whole human genome in 2003 cost roughly $2.7 billion (Mardis, 2006).

While the cost of entire genomic sequencing remains above $1000 today, companies such as 23&me have significantly brought down the cost of genotyping, which is the process of sequencing a fraction of the genome to assess whether an individual possesses specific genetic variants. A 23&me kit priced at $100 will generate an ancestry report and several health reports ranging from simple insights such as why an individual may not be able to eat gluten or feel tired more easily to the potential risk of late-onset Alzheimer’s and Parkinson’s Disease (23&Me, 2018).

More recently, San Francisco-based DNA sequencing company Illumina, backed by Chan Zuckerberg Biohub, unveiled its new machine, NovaSeq, at the J.P. Morgan Healthcare Conference. Illumina states that the Novaseq could one day bring the whole genome sequencing cost down to $100 (Nasdaq, 2017).

As technology advances and more individuals are willing to participate in self-quantification and data sharing, services can become more financially accessible.

Biodata Futures

Figure 4: Thriva Blood Test Kit

Figure 5: 23&me DNA Test Kit 13

Biodata Futures

Figure 6: Sugarbeat Adhesive Glucose Monitor

Figure 7: Omron Wearable Blood Pressure Monitor

Ubiquity Monitoring, charging, or simply paying attention to the collection of data often causes stress and boredom, inevitably leading to the abanadonment of the devices or apps. For those who are extremely health conscious or with chronic conditions, monitoring may become a daily activity through necessity. However, for average individuals who cannot reap immediate benefits from constant self-monitoring, keeping up may be relatively difficult. Research and innovation are greatly needed in order to shift active, conscious monitoring to convenient and passive monitoring in the background.

The concept of ubiquitous tracking was revived by Gary Wolf in 2010 (TED@Cannes, 2010). It is constant and hidden in the objects and environment we interact with every day.

14

The past few years saw great development in the miniaturisation of devices used for self-quantification.

Glucose monitors (Fig. 6) can now adhere comfortably on one’s arm, sending direct feedback to smartphones without the need to use a lancet or an external communicator throughout the day (Expected to launch in the UK in 2018).

Blood pressure will soon be trackable with an inflatable wristwatch (Fig. 7). Ultrasound and MRI machines are under a re-vamp to become more portable, akin to electronic beauty devices we see on the market today (Duke Health, 2017).

Boundaries are beginning to blur between medical devices and consumer products, giving individuals more power and control over their personal health.

Biodata Futures

Figure 8: Implant Monitor developed by Polytechnic school in Lausanne, Switzerland

Figure 9: Concept Nanobot by Olympus

Life-logging is the idea to simply, mechanically, automatically, mindlessly, completely track everything all the time. Record everything that is recordable without prejudice, and for all your life. (Kelly, 2016) The day when a monitor becomes truly ubiquitous is when it no longer requires power to function on its own but becomes a part of us. According to scientist Ray Kurzweil, Nanobots, or computerised robots the size of blood cells, will be running freely in our bodies and brains, monitoring our vitals and repairing our bodies by 2030 (Galeon, 2017).

Along with extensive R&D, the strengthening of policies, and the elimination of consumer fears, implants could become mainstream sooner, and a clearer path for nanobots becoming the future of ubiquitous selfquantification will show.

Despite the confidence portrayed by leading scientists and futurists, this vision may still take some decades to realise. Technology aside, ethical issues today are still roadblocks between the wider adoption of implants and ingestible monitors.

15

Biodata Futures

Figure 10: Apple open-source Healthcare platforms

Actionable Insight Developments in Artificial Intelligence (AI) and Big Data analysis will be the main driving force behind making selftracking more reactive and dynamic. Machine learning techniques utilising Deep Neural Networks (DNNs) are capable of automatically extracting meaningful features from available data, and through an AI-powered Interface, deliver meaningful and engaging insights to the user.

Tech giant Apple, leveraging on its 1.3 billion active IOS devices (Apple News Room, 2018), has long begun transforming the personal healthcare industry. In recent years, along with the various versions of the iPhone and the Apple Watch, Apple has introduced three opensource frameworks intended to improve aspects of health care: the HealthKit (2014), ResearchKit(2015) and CareKit (2016). A variety of AI-powered apps available on the platforms have made it incredibly easy to pick up patterns in the way we talk and text, detect the first signs of depression or suicide risk, and provide therapy through amiable chatbots (Molteni, 2017).

The impact of AI also extends to clinical treatment, enabling data-driven prediction of drug effects and interactions.

16

In the United States, the IBM Watson Health cognitive computing system has used machine learning approaches to create a ‘decision support system for physicians treating cancer patients, with the intention of improving diagnostic accuracy and reducing costs using large volumes of patient cases and over one million scholarly articles’ (Jones et al., 2018, p.223).

As apps are pulling in more and more personal data and machine learning is powering more and more medical devices and software, regulation becomes extremely tricky, especially in relation to outdated security and privacy agreements such as the HIPAA (Health Insurance Portability and Accountability Act of 1996), which served to provide national standards for protecting the privacy of health information in the United States (HHS.gov, 2018).

Having our life-long health records and biodata collected and shared brings significant benefits to an individual and at the collective level, but so comes the responsibility attached to maintaining it. Our health data, more than any time in history, has become an asset that we must learn to manage in order to protect ourselves.

3 The Future of Data Ownership

Biodata Futures

3 The Future of Data Ownership In the current digital world, data is everything. From our preferences and photos to interactions and purchases, every aspect of our digital life can be collected, analysed and sold for advertising purposes.

We have long known that digital businesses depend on the systematic exploitation of data to generate the majority of its revenue, yet for the free service companies like Facebook and Google offer us, we have always turned a blind eye and handed over our information willingly. Perhaps one of the greatest scandals recently is when Cambridge Analytica, a UK-based consulting firm, used 50 million Facebook users’ information without permission to influence the outcome of the 2016 US presidential election (Greenfield, 2018). This incident, along with remaining ripples of disturbance caused by the Edward Snowden incident in 2013 (BBC News, 2014), has finally triggered society to stand up to corporate and governmental exploitation and properly question the issue that is data privacy and ownership.

As timely as it is, after years of negotiation and drafting, the European General Data Protection Regulation (GDPR) will finally come into full effect on May 25, 2018, bringing outdated personal data laws up to speed (Albrecht, 2016).

Starting from April, internet users around the world would have begun to receive alerts about the updates of company privacy policies, allowing users to change or delete their stored information, opt-out of data sharing activities and request full copies of the self-generated data that any company holds on them.

In terms of healthcare, personal data can be extremely sensitive, and users should be able to have more control over the generation, use, transfer, access and exchange of the data. However, efforts to comply with GDPR has proven to be a huge strain for the healthcare industry. As of recent reports, the NHS has spent a collective of over £1 million yet is still significantly underprepared, leaving over 50% of health trusts without an implementation plan (Parliament Street, 2018). Think tank Parliament Street argues that ‘GDPR implementation would add further strain to NHS resources already struggling with rising costs for social care’.

Not so different from the public sector, private entities are also suffering losses from the restructuring brought about by the GDPR.

18

The complexity introduced by the GDPR in relation to data maintenance and sharing makes it more difficult for companies to misuse private information, however it could significantly hamper meaningful progress in the use of data, resulting in the shutdown of many smaller research companies and businesses that do not have the resources to update their infrastructures. With investors looming behind larger corporations backs, it is also no small feat to re-strategise a company’s data future while guaranteeing consumer rights. Those who are pushing through with the GDPR are alerting us with pages and pages of new privacy agreements and contracts, but can we really trust them to have our best interest in mind? It may take some time before individuals can finally feel like they have control and ownership of their data.

The future of health data storing and sharing will rely on systems and procedures that eliminate the need for trust not only to ensure the appropriate handling and use of data but also to facilitate the use and exchange of data for meaningful progress towards innovation and better health outcomes (Mamoshina et al., 2018).

4 The Future of Data Exchange

Biodata Futures

4 The Future of Data Exchange Cryptocurrencies have received all the talk and attention these past few years.

Blockchain, the technology behind Bitcoin, is believed to be the next big thing that will revolutionise many industries, with as many as 30 startups offering Initial Coin Offerings (ICO) to attract investment every day in the year of 2017 (Business Insider, 2017).

A blockchain is a distributed database that stores records inside cryptographically secured blocks which are linked together, forming an immutable chain of records that is resistant to modification of the data (IoTCoreSoft, 2017). While Bitcoin requires the recording of financial transactional data, the technology can be used to store any type of data and, through smart contracts, establish agreements between two parties without the need for third-party validation. As such, blockchains and smart contracts can provide a foundational layer for any type of business or purpose that requires the need to store and transfer data transparently and securely.

Figure 11: Blockchain Encryption Cryptography Map

20

Healthcare is one of the industries blockchain startups hope to revolutionise. As mentioned in the previous chapters, the major challenges for healthcare are ease of data exchange (interoperability) and the need to use data in research and commercial innovation without compromising personal data privacy and security. A private blockchain-based system can dramatically simplify the process, allowing individuals to manage their personal health data, set grounds for exercising ownership, and assign access permission to others.

Biodata Futures

Figure 12: Blockchain based Platform Medicalchain

A UK-based startup founded by Dr Abdullah Albeyatti and Mo Tayeb in 2016 is currently in the proof-of-concept phase for their blockchain enabled platform, Medicalchain.

Under Medicalchain’s model, health records will be encrypted and housed in regulatory-compliant databases like they are today, but the user, as the owner of the data, will be able to use a private key to grant permission to a doctor located anywhere to decrypt, view, and edit the records. ‘[The platform will record] hashes that point to the data’s location on encrypted servers within the patient’s own jurisdiction’ (Floyd, 2017).

The data type gathered on such a platform can further be extended to self-quantified information generated by home-owned medical devices, wearables and mobile health apps. This data can be used in conjunction with official medical records to provide better treatment for the patient and to generate broader insight for research.

To encourage engagement and participation, blockchain technology can also allow for the creation of a data-driven marketplace where patients can earn tangible rewards in the form of cryptocurrency for making their data available to various data consumers including the application development community, pharmaceutical and consumer companies, and research institutions (Mamoshina et al., 2018).

IBM Watson Health Chief Science Officer, Shahram Ebadollahi, specifically address how the combination of blockchain and artificial intelligence can streamline clinical trials and drive forward innovation.

‘Clinical trial participants could be instantly and automatically rewarded for their participation, and smart contracts could verify that the designed methodology has been followed. Data from Internet-enabled medical devices used during clinical trials could be included with other research data and analyzed by an artificial intelligence neural network to reveal hidden correlations.’

(IoTCoreSoft, 2017) While blockchain technology promises numerous opportunities for healthcare and personal data management, the technology is not fully mature today nor a panacea that can be immediately applied. Several technical, organisational, and behavioural economics challenges must be addressed before a platform like this can be adopted by organisations nationwide (Krawiec et al., 2016).

Now is the best time to be critically dissecting, questioning and evaluating these complexities in order to improve the services while they are in development.

21

Biodata Futures

Speculative Design and Strategy ‘Imagining the misuse and unexpected consequences of new technological developments isn’t a game for futurists; we don’t compete in trying to come up with the biggest dystopias. It’s a way of helping us all plan for difficult outcomes and, ideally, to make wiser design decisions.’ (Cascio, 2013)

Through a report of these trends and drivers, the future of personal health data seems to lie in a personal information management service that allows individuals to become the sole owners of their data. Data collection and participation on the platform will be incentivised through monetary rewards and benefits paid directly to the individuals themselves. With more people on board and contributing to the data ecosystem, innovation in the healthcare industry can be greatly accelerated.

Technological feasibility aside, there are harder questions we must ask ourselves first: Are individuals ready for a shift in ownership and responsibilities of their personal health data? Should a direct financial relationship be established between individuals and data consumers?

How can policies protect the interest of individuals and corporations? Ethical and moral dilemmas must be addressed to assess the plausibility of this future.

Figure 13 Future Cone

22

‘[Critical Design] is less about problem-solving and more about problem finding within disciplinary and societal discourse’ (Malpass, 2017, p.4).

As depicted in the Future Cone, preferable futures lie within possible and plausible, but the idea of preferable is difficult to determine. Although we play a role as consumers and voters, we have limited say in ‘the future’, as it is predominantly decided by the government and industry. Could design help people participate more actively as citizen-consumers? Anthony Dunne and Fiona Raby, pioneers of speculative design, argues that ‘Although the future cannot be predicted, we can help set in place today factors that will increase the probability of more desirable futures happening. And equally, factors that may lead to undesirable futures can be spotted early on and addressed or at least limited’ (Dunne and Raby, 2013, p.5).

Biodata Futures

Figure 14: Infinity Desktop Application

Speculative Design in Practice While this paper addresses the context of my project, through design practice, I will be assessing how speculative design can be used as a tool to help us explore and engage more deeply with the potential wider impact of technology rather than the technology itself. As this vision of a data management platform is incredibly close to a proposal today, I chose to present a believable business platform solely focused on the facilitation of a data ecosystem and marketplace. This includes the development of a visual identity, hero products, as well as a business model draft and service plan. This platform will then be projected up to 30 years into the future to evaluate its potential development and explore the user stories along the way.

By introducing everyday personas that we can relate to and involving real-world stakeholders such as the NHS, pharma giant AbbVIe and Space tech company Space X, I intend to create constructive confusion by asking the public to interpret and question whether what they see is fact or fiction.

23

Conclusion We are at such an exciting time in history. Advancements in genetic engineering promise that many of us alive today could live on healthily for a greatly extended amount of years. Human capabilities can be extended beyond time, and eventually even beyond deep space.

Within the technological advancements that keep emerging, design has an obligation to help direct our collective concerns towards a better application of technology and science for society tomorrow.

A change in the healthcare and data industry is extremely necessary and must not be solely dictated by the government or corporate interests but also established with the voice of the average consumer. As a designer, it is my responsibility to bring forward concepts that are discussed on paper and in theory but are difficult to fully grasp. While experimenting with a range of approaches and angles, my hope is that the body of work I produce can serve as a backdrop for discussion and criticism, engaging those who can and want to make a difference. ‘Indeed, one of the key reasons for allowing experimentation is to uncover new things that can’t be learnt from existing arrangements. The economy of the future should not be completely constrained by the economics of the present.’ (Nesta, 2016)

Biodata Futures

Appendix Figure 1: Babylon (n.d.). Babylon Health Mobile Application. [Collage] Original images available at: https://www.babylonhealth.com/ [Accessed 16 May 2018] Figure 2: Patients Know Best Blog (2015). Patients Know Best Web Portal. [Collage] Original images available at: https://blog.patientsknowbest.com/2015/07/15/upgrades-to-theprivacy-settings-of-your-medical-record/ [Accessed 16 May 2018] Figure 3: Bupa (n.d.). Bupa Health Insurance Rewards. [Collage] Original images available at https://www.bupa.co.uk/health/health-insurance/why-choose-bupa [Accessed 16 May 2018] Figure 4: Thriva (n.d.). Blood Test Kit. [Image] available at: https://thriva.co/[Accessed 16 May 2018] Figure 5: 23&me (n.d). 23&me DNA Test Kit. [Image] Available at: https://www.23andme. com/en-gb/dna-ancestry/ [Accessed 16 May 2018] Figure 6: Sugarbeat (n.d). Sugarbeat Flexible Glucose Monitor. [Image] Available at: http:// sugarbeat.com/ [Accessed 16 May 2018] Figure 7: Omron (n.d). Omron Wearable Blood Pressure Monitor. [Image] Available at: http:// gadgetsandwearables.com/2018/01/08/omron-heartguide/ [Accessed 16 May 2018] Figure 8: Benoise, A (2015). Implant Monitor developed by Polytechnic school in Lausanne, Switzerland. [Image] Available at: https://health.howstuffworks.com/medicine/moderntechnology/will-nanobots-perform-surgery-in-future.htm [Accessed 16 May 2018] Figure 9: News Corp Australia (2014). Illustration of a Japanese nanobot / microcapsule that Olympus is developing to “swim� around the body repairing things as they go. [Image] Avalailable at: http://www.news.com.au/technology/gadgets/wearables/the-mindblowing-thingsnanobots-could-do/news-story/5c1d2305a52c6056c63cc0a53422ce82 [Accessed 16 May 2018] Figure 10: Apple (n.d.). Research Kit and Care Kit. [Collage] Original images available at: https://www.apple.com/uk/researchkit/, https://www.apple.com/uk/ios/health/ [Accessed 16 May 2018] Figure 11: Medical Chain (2018). Encryption Cryptography Map. Whitepaper 2.1, p.14..

[Image] Available at: https://medicalchain.com/Medicalchain-Whitepaper-EN.pdf [Accessed 16 May 2018] Figure 12: Medical Chain (n.d.). Telemedicine Platform. [Image] Available at: https:// medicalchain.com/en/ [Accessed 16 May 2018] Figure 13: Candy, Stuart (2013). Future Cone. Dunne and Raby, Speculative Everything: Design, Fiction, and Social Dreaming.

Figure 14: Liu, S (2018). Infinity Desktop Application. [Image]

25

Biodata Futures

Bibliography IBM Marketing Cloud (2016). 10 Key Marketing Trends for 2017. [pdf] p.2. Available at: https://www-01.ibm.com/ common/ssi/cgi-bin/ssialias?htmlfid=WRL12345USEN. Kelly, K. (2016). The Inevitable. New York, N.Y.: Penguin Books, pp.230-241.

Coleman, C. (2016). Could ‘connected care’ be the two most important words in 21st-century health?. [online] The Telegraph. Available at: https://www.telegraph.co.uk/ wellbeing/future-health/connected-healthcare/.

The Economist Intelligence Unit (2016). Medtronic: Value Based Healthcare. The UK: Value-based strategy in a changing NHS. [online] Available at: http://vbhcglobalassessment.eiu. com/the-uk-value-based-strategy-in-a-changing-nhs/.

Deloitte (2017). 2017 Global Health Care Sector Outlook. [pdf] Available at: https://www2.deloitte.com/content/dam/ Deloitte/global/Documents/Life-Sciences-Health-Care/gxlshc-2017-health-care-outlook-infographic.pdf.

BBC Today, (2017). [TV programme] 9th Jan, 2017. Radio 4: BBC. Dr. Goyal, N. (2018). What does the future of telemedicine look like?. [online] Quora. Available at: https://www.quora. com/What-does-the-future-of-telemedicine-look-like/ answer/Nitin-Goyal-MD. Parsa, A. (2018). We believe it is possible to put an accessible and affordable health service in the hands of every person on earth. [Blog] Babylon Health. Available at: https://www. babylonhealth.com/blog/health/we-believe-it-is-possibleto-put-accessible-and-affordable-healthcare-in-the-handsof-every-person-on-earth [Accessed 16 May 2018].

Glaser, J. (2011). Interoperability: the key to breaking down information silos in health care. Healthcare Financial Management, 65(11), pp.44-50.

NHS (2014). Five Year Forward View.[pdf] pp.31-32.

Available at: https://www.england.nhs.uk/wp-content/ uploads/2014/10/5yfv-web.pdf.

Stevens, L. (2017). Patients Knows Best lets Surrey view single care record. [online] Digital Health. Available at: https:// www.digitalhealth.net/2017/05/patients-knows-best-rollsout-shared-records-in-surrey/.

WHO. (2018). National health policies, strategies and plans. [online] Available at: http://www.who.int/nationalpolicies/

26

about/en/ [Accessed 16 May 2018].

Topol, E. (2015). The Patient Will See You Now. New York: Basic Books.

Nosta, J. (2014). Be Healthy And Get Rewarded--Incentives Driving Engagement In Health And Wellness. [online] Forbes.com. Available at: https://www.forbes.com/ sites/johnnosta/2014/04/09/be-healthy-and-getrewarded-incentives-driving-engagement-in-health-andwellness/#d2594c7373ce.

Gore, A., Harmer, P., Pfitzer, M. and Jais, N. (2017). Can Insurance Companies Incentivize Their Customers to Be Healthier?. [online] Harvard Business Review. Available at: https://hbr.org/2017/06/can-insurance-companiesincentivize-their-customers-to-be-healthier [Accessed 16 May 2018].

Oscar | Smart, simple health insurance (n.d.). [online] Available at: https://www.hioscar.com/ny [Accessed 16 May 2018].

Statista. (2015). Global wearables sales revenue by category 2014-2017 | Statistic. [online] Available at: https://www. statista.com/statistics/679197/wearables-sales-revenueby-category-worldwide/ [Accessed 16 May 2018].

Gartner.com. (2016). Gartner Survey Shows Wearable Devices Need to Be More Useful. [online] Available at: https://www. gartner.com/newsroom/id/3537117.

Mardis, E. R. (2006). Anticipating the 1,000 dollar genome.

Genome Biology. 7 (7): 112.

23andMe UK. [online] Available at: https://www.23andme. com/en-gb/ [Accessed 16 May 2018].

TED@Cannes (2010). Gary Wolf: The quantified self. [video] Available at: https://www.ted.com/talks/gary_wolf_the_ quantified_self/transcript?language=en.

Duke Health (2017). How a $10 Microchip Turns 2-D Ultrasound Machines to 3-D Imaging Devices. [video] Available at: https://www.youtube.com/watch?v=092hatFap0&feature=youtu.be.

Galeon, D. (2017). Kurzweil: By 2030, Nanobots Will Flow Throughout Our Bodies. [online] Futurism. Available at: https://futurism.com/kurzweil-by-2030-nanobots-will-flowthroughout-our-bodies/ [Accessed 16 May 2018].

Biodata Futures

Apple Newsroom. (2018). Apple Reports First Quarter Results. [online] Available at: https://www.apple.com/uk/ newsroom/2018/02/apple-reports-first-quarter-results/ [Accessed 17 May 2018].

Molteni, M. (2018). Health Care Is Hemorrhaging Data. AI Is Here to Help. [online] WIRED. Available at: https://www. wired.com/story/health-care-is-hemorrhaging-data-ai-ishere-to-help/.

L. D. Jones, D. Golan, S. A. Hanna, and M. Ramachandran (2018). Artificial intelligence, machine learning and the evolution of healthcare. Bone & Joint Research, 7:3, 223225.

HHS.gov. (2018). Summary of the HIPAA Security Rule. [online] Available at: https://www.hhs.gov/hipaa/forprofessionals/security/laws-regulations/index.html [Accessed 17 May 2018].

Greenfield, P. (2018). The Cambridge Analytica files: the story so far. [online] the Guardian. Available at: https://www. theguardian.com/news/2018/mar/26/the-cambridgeanalytica-files-the-story-so-far.

BBC News. (2014). How the US spy scandal unravelled. [online] Available at: http://www.bbc.co.uk/news/world-uscanada-23123964 [Accessed 17 May 2018].

Albrecht, J. (2016). How the GDPR Will Change the World.

European Data Protection Law Review, 2(3), pp.287-289.

Parliament Street. (2018). Getting the NHS Ready for GDPR [pdf], p.2. Available at: http://parliamentstreet.org/wpcontent/uploads/2018/04/Getting-the-NHS-Ready-forthe-GDPR.pdf.

IoTCoreSoft. (2017). Blockchain and AI: Impact on Pharmaceutical Companies. [online] Available at: https:// www.iotcoresoft.com/iot-knowlegde-center/blockchainand-ai-impact-on-pharmaceutical-companies [Accessed 17 May 2018].

Floyd, D. (2017). Enter symbol, name or keyword Medicalchain: This Startup Wants to Put Your Health Records on a Blockchain. [online] Nasdaq. Available at: https://www. nasdaq.com/article/medicalchain-this-startup-wants-to-putyour-health-records-on-a-blockchain-cm880558 [Accessed 17 May 2018].

Krawiec, R., Housman, D., White, M., Filipova, M., Quarre, F., Barr, D., Nesbitt, A., Fedosova, K., Killmeyer, J., Israel, A. and Tsa, L. (2016). Blockchain: Opportunities for health care. [ebook] Available at: https://www2.deloitte.com/us/en/ pages/public-sector/articles/blockchain-opportunities-forhealth-care.html [Accessed 17 May 2016].

Cascio, J. (2013). To Predict The Future Of Technology, Figure Out How People Will Use It Illegally. [online] Fast Company.

Available at: https://www.fastcompany.com/2682588/topredict-the-future-of-technology-figure-out-how-peoplewill-use-it-ilegally [Accessed 17 May 2018].

Malpass, M. (2017). Critical Design in Context, History, Theory, and Practices. New York: Bloomsbury Academic, p.4.

Dunne A. & Raby F. (2013). Speculative Everything. The MIT Press, pp.4-6.

Nesta, (2016). Selling yourself: four issues and four implications about markets for personal data. [Blog]. Available at: https:// www.nesta.org.uk/blog/selling-yourself-four-issues-andfour-implications-about-markets-personal-data [Accessed 16 May 2018].

Mamoshina, P., Ojomoko, L., Yanovich, Y., Ostrovski, A., Botezatu, A., Prikhodko, P., ‌ Zhavoronkov, A. (2018).

Converging blockchain and next-generation artificial intelligence technologies to decentralize and accelerate biomedical research and healthcare. Oncotarget, 9(5), 5665–5690.

Business Insider (2017). This is what you get when you invest in an initial coin offering. [video] Available at: http:// uk.businessinsider.com/ico-initial-coin-offering-explainedbitcoin-ethereum-2017-11].

27