B3 Final Report Goals by jolijnvs

FINAL REPORT A USER-CENTERED RESEARCH AND DESIGN PROJECT MAY 2017

ABSTRACT

A project in cooperation with the Hartstichting and initiated by the Honors Academy track of Empowerment for Health and Wellbeing TU/e.

This paper addresses pain points of heart patientâ&#x20AC;&#x2122;s rehabilitation experience in the secondary prevention phase after a heart infarct or angina pectoris. A user-centred research and design approach has been taken, involving various stakeholders and a co-creation session with 8 participants. The final concept, GOALS, presents a design solution promoting communication and self-reflection with a partner. The approach, concept and practical takeaways are inspiration for the Hartstichting and other stakeholders to innovate with a usercentred frame of mind to improve patientâ&#x20AC;&#x2122;s rehabilitation for the future.

A project by: Jolijn van Sleeuwen Laura Power Chiara Treglia 2

j.j.m.v.sleeuwen@student.tue.nl l.e.power@student.tue.nl c.treglia@student.tue.nl 3

INDEX

Introduction Approach Stakeholders Pain points Focus Preliminary design ideas Concept; GOALS Implementation advice Practical Takeaways Summary Conclustion & Call to Action Acknowledgements References Appendix 1: Co-creation booklet Appendix 2: Design ideas

6 7 8 12 24 26 28 34 36 38 40 42 43 44 51

INTRODUCTION

In the Netherlands alone, 1 million people are heart patients. In other words, that’s one in seventeen people who are recovering from a heart problem such as a heart attack or heart infarct (“Hartstichting strijd tegen hart- en vaatzieken | Hartstichting,” n.d.). The Hartstichting (Dutch Heart Foundation) is reaching out to these patients and is investing in research and development to innovate in heart care. But even with the wealth of knowledge in this field, there are still ‘pain points’ in prevention and secondary prevention of heart conditions. To address this, a team of the TU/e Honors Academy students for Empowerment for Health and Wellbeing have conducted a patientorientated research and design project which has lead to meaningful insights, design ideas, design requirements and organisational

opportunities for the Hartstichting. Next to these insights, the team developed a selfreflection tool for heart patients who are in the rehabilitation phase after a heart attack. This tool builds on the empowerment of the patient in collaboration with their partner and an expert. For the Hartstichting we have conducted this patient-orientated research and design approach which has lead to meaningful solutions to improve heart patients’ rehabilitation experience. Our process has involved in depth context and user research including various stakeholder interviews, a co-creation session and several iterations of our concept. The role of designers in addressing these pain points is to generate input from a creative perspective, rather than a medical perspective.

cover any missing gaps in the experience flow. Afterwards, a thematic clustering was developed relating to both the insights shared during the co-creation and the insights previously derived from research.

The approach used to identify emergent needs of heart patients consisted of a mixture of literature research and interviews with medical professionals and cardiac patients. The main insights of the research were placed in an “experience map”. The experience map frames the process of a heart patient in six main phases, chosen as a result of previous research : 1) previous to the heart attack; 2) moment of heart attack; 3) in the hospital; 4) discharge moment, before going home; 5) early stages of rehabilitation at home (1 to 2 months); 6) later stages of rehabilitation.

APPROACH

In conclusion, the needs and pain points that emerged from this in-depth research and analysis process are explained the following chapter. This research brought us to an eye-opening understanding of patients’ rehabilitation experiences who have undergone a heart intervention due to angina pectoris or a heart infarct. This has been our focus group, which we are going to refer as “patients” throughout this paper. We have gathered this understanding from interviews and by co-creating with patients and stakeholders involved in their rehabilitation process.

A co-creation session (Appendix 1) took place with various stakeholders including patients and a partner. During the cocreation, the experience map was “rebuilt” in order to evaluate former research and

PROCESS INTERVIEWS STAKEHOLDERS

LITERATURE RESEARCH

IDEA UX POV MAP

TEST

CO-CREATION SESSION

IDEA

WHITEPAPER

HEALTHCARE INDUSTRY The industry segment facing the most challenges with heart patients is for obvious reasons the healthcare system. In particular, patients in secondary prevention (which is the prevention that follows a cardiac episode to prevent a second one) represents a specific target which differs, for instance, to cardiac patients who are in primary prevention. This underlines the reactive nature of medicine towards problems. Healthcare institutes, have the tendency to tackle patient issues when there’s a complaint. In the case of secondary prevention from a heart failure, this is not realistic since long-term lifestyle changes are needed to prevent a new episode.

STAKEHOLDERS

The healthcare industry is well renowned for its optimization by saving costs and time in delivering cures and support to patients. These principles are colliding with the actual needs of heart patients in secondary prevention, due to the nature of the long term medical and/or lifestyle adjustment therapies they have to undergo for the entirety of their lives, as well as the costs, in terms of human labour that a second episode would entail. Fig. 1 Stakeholderoverview

“We have no clue how patients develop after a few months. We would love to have more sight on that. On the long term rehabilitation. We are let’s say a ‘spingboard’ we push patients in the right direction, but we have no clue how the patient’s behaviour is after long term’” Koops, R. - Rehabilitation Physiotherapist (2017, 31 January), personal interview.

“Healthcare is reactive: doctors have nothing to do with noncomplaining patients” Pouls, P. - Pharmacist (2016, 15 November 2016), Phone interview

HEART FAILURE PATIENTS Not surprisingly, the group that suffer the most from a heart failure are the patients themselves. The nature of the problem, the age of the patient and his or her social status affect dramatically their capability of coping with the drastic lifestyle changes they need to maintain to prevent a new episode. For instance, they need consistency in adhering to medical recommendations and their side effects, new alimentary regimes and new physical activity patterns are a few of the challenges that a heart patient faces, let alone the psychological scar that a heart infarct might leave. The patient’s mindset, in fact, is the most crucial element to determine his/her capability of adjusting and maintaining the adjustments in the long term. The fact that the perceived dangerousness of a heart failure has reduced due to a more effective medical interventions compared to the past is both a motivation and a demotivation for the patient’s full rehabilitation. More pain points from the patient’s perspective will be discussed in the following chapter. 10

FAMILY AND PARTNER “If you had a heart attack, when you go to the hospital they give you aspirin, then you feel like you felt before, it’s not that harsh as an experience. Cancer is way more lethal, prostate cancer you die with it, not for it.”

Our literature and interview research revealed that a heart patient’s partner and family often suffer for the condition of their beloved. In particular, after a heart failure, the overwhelming feeling of worry for the condition of the patient seems to haunt the partner.

Pouls, P. - Pharmacist (2016, 15 November 2016), Phone interview.

More specifically, when a patient has recovered from the first phases of rehabilitation and is finally allowed to regain temporary suspended autonomies, such as driving a car or going back to work, the partner and family have to give up of a sense of control that they temporarily had while the patient was recovering at home.

“Extreme patients and this happens often: “I didn’t take my pills of blood thinners because every time I hit myself I get bruises, that doesn’t work for me.” But there are also people who are setting alarms, weigh everything they eat, monitor flood intake extremely good.” Van Lankveld, W. - Intensive Care Nurse (2016, 15 December), Skype interview.

“When the patient is indifferent to the disease, the wife got scared. he doesn’t remember when he had the heart attack, while she does.” Pouls, P. - Pharmacist (2016, 15 November), Phone interview.

The role of a family and partner becomes particularly intense when the intrinsic motivation of the patients is low. Thus, certain responsibilities shift in the hands of the family or partner, such as reminding to take medications, checking alimentation and forbidding smoking, for instance.

ROLE OF THE PARTNER AND SOCIAL NETWORK WORRIES OF THE PARTNER

OWN & OTHER’S PERCEPTION (OF PATIENT’S CONDITION) OVER TIME

PAINPOINTS

“When they [patients] have a pacemaker it’s easy to know a lot about the heart. But for lifestyle… if the patient tells you about it then you know. But is it reliable? Often wives come to tell me the truth… “ Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview.

The stages of recovery differ from patient to patient. However, at a certain point, the patient is reintegrated into society and can conduct regular activities, although they should always be aware and careful of their health. In the long term, it seems as though the social environment of a patient underestimates the difficulties that he or she has to face on a daily basis. This can create a sense of isolation in the patient, who feels misunderstood and alone in the situation.

According to several interviews, the partner has a key role in the health and wellbeing management of a heart patient. Often a partner is the one who witnesses the patient’s heart failure, calls for an emergency ambulance and waits in the hospital until the patient is awake again. This experience can leave a permanent worry, also enhancing their feeling of responsibility towards the patient.

Fig. 2 Clustering of all the painpoints

“The partner is often more shocked than patients. For example if the patient goes for a walk alone, and he/she says “I’ll be back in 15 minutes”, the partners take this very serious and they would clock the time.” Verhoeven - Dobbelsteen, K. Rehabilitation Nurse / Coach (2017, 31 January), Personal Interview. 13

COMMUNICATION IN HOSPITAL AND REHABILITATION EXPERIENCE HOSPITALISATION AS A MOMENT FOR REST

HOSPITAL PERSONAL ATTENTION

PATIENT-DOCTOR COMMUNICATION

“There was a moment of rest, a moment to do nothing”

Even though the attention and quality of care that patients receive is dependent on different factors (hospital’s policies, time available per visit, presence of professionals for non-medical or psychological support, rehabilitation programs), patients seem to be unhappy with the very structured and procedural approach that most hospitals practice. The rehabilitation process often entails various different doctors and professionals, which leads to a lack of opportunity for patients to bond with a professional. Being seen by such a variety of healthcare staff makes patients feel there is less personal focus and more repetition of information within the procedure.

Especially for patients who have been overwhelmed by stress, the hospitalisation phase immediately following a heart infarct is considered a moment of “rest”; where medical professionals are in control. The patient can “let things happen” to him or herself as they feel they are in a safe environment to relax.

“Most patients don’t really have an awareness of why they are taking the meds, but they see the side effects! The doctors are in rush or skip the explanation, because they repeat it many times or the patient tells you that he knows for what the mads are for but it’s not true.”

Moreover, there is not a defined guideline for advice in terms of diet or physical activity because ‘one does not suit all’. Rehabilitation programs offer advice in these areas, but the information is inconsistently provided among patients.

Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview.

Patient ( 2017, 13 February), Co-creation session. Especially for patients who have been overwhelmed by stress, the hospitalisation phase immediately following a heart infarct is considered a moment of “rest”; where medical professionals are in control. The patient can “let things happen” to him or herself as they feel they are in a safe environment to relax.

“The patients meet many doctors (during hospitalisation) they won’t see ever again. Then, aftercare is in the hands of the GP.”

“It’s warmly recommended to do aerobic activities, not weights. Yet, the doctors don’t tell much about these things...especially if they are not asked.”

“There are also patients that do not really understand that they should change their lifestyle, or they do not want to understand. We need to repeat and repeat and use also the images of the Heart Foundation to make it visual.” Van Lankveld, W. - Intensive Care Nurse (2016, 15 December), Skype interview.

“Exercise training led only to significant 11% reduction in all-cause mortality or hospitalization.” Conraads et al. 2012, p. 451-458)

Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview.

Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview. 14

TRUST AND CONNECTION TO EXPERTS

“Low socio-economic focus is interesting because doctors are usually of a high socio-economic background and struggle to communicate effectively with patients of a low socio-economic background, usually not realising that they don’t understand. This communication and education for patients is a problem area.”

“I have only good words about the staff and doctors in the hospital, they informed me well and I have trust in them. I find it so fascinating that such a complex intervention is nowadays so easy.” Van de Camp, H. - Patient (2016, 7 November), Personal interview. In addition, the social class of a patient can influence their level of understanding regarding medical information or lifestyle recommendations that he/she receives from professionals. Patients of a lower socioeconomic class may find it more difficult to communicate with doctors, who are usually of a high socio-economic class, and doctors may not know how to explain terms in an understandable way.

Neutelings, I. - PhD (2016, 20 October), Personal interview.

“The doctor didn’t give me any specific warnings apart from to avoid grapefruit because it messes with the medication and to not give blood.” Vass, J. - Patient (2016, 10 November), Personal interview.

“In lower social classes people tend to go for the quick solution even more! If you are stressed and don’t have enough money, you make quick decisions with shortterm perspectives - for instance the food, you have to buy healthier food, exercising... ” Pouls, P. - Pharmacist (2016, 15 November), Phone interview.

“There is not always 100% trust in doctors.” Patient (2017, 13 February), Co-creation session.

“When he comes back to the hospital he [the patient] will probably meet doctors specialised in secondary prevention. Sometimes the patients ask for the same doctor, sometimes they don’t mind too much. Most likely, for another recovery in hospital, they [patients] ask for the same doctor who treated them the first time.”

PATIENTS’ PRO-ACTIVENESS TO CHANGE MEDICATION The hospital procedures, as previously mentioned, do not allow time and room for personal bonding between patients and experts. However, trust is a highly debated topic among patients. They need to put a lot of trust in the hands of a system that is perceived as “cold” and “de-touched”, yet it is taking care of them. Also, there is a cultural element in blindly trusting an authority such as a doctor. This may vary in different countries, thus in different patients.

Medication can be adjusted over time when the patient is far in his/her recovery process, in order to reduce the related negative side effects. However, doctors will not initiate this change (enhancing the idea that healthcare has a reactive nature). If the patient is proactive enough to propose changes, the doctor will consider and evaluate new prescriptions. This frustrates patients when they visit a doctor and discover they were on more medication than necessary and that the doctor did not initiate the change.

Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview.

PATIENT’S IDENTITY CRISIS REHABILITATIONS OPTIONS VS. PERSONAL PREFERENCE

“Patients allowed to choose their own exercise activities following a period of supervised exercise training increased submaximal exercise capacity over the next 12 months compared with those involved in continuously supervised exercise or usual care” (Conraads et al. 2012, p. 451-458)

CONFRONTING EXPERIENCE OF HEART FAILURE

“From that day the doctor told me that I am a heart patient, and that was heavy to realise.”

The rehabilitation options may differ from hospital to hospital. Some hospitals do not offer this service, while others have already made these programs a necessity to help the patient in the early stages after a heart infarct. The overall aim of these programs is to find suitable lifestyle adjustments. Nevertheless, the option proposed might not suit the preferences of the patients.

Van de Camp, H. - Patient (2016, 7 November), Personal interview.

“At the beginning, I was on 8 medications a day. Now I take 5 a day and will be on these for the rest of my life.” Vass, J. - Patient (2016, 10 November), Personal interview. November), Personal interview.

“If you don’t fit in the existing rehabilitation trajectories, there is no other option..” Patient (2017, 13 February), Co-creation session. 18

TRUST IN OWN BODY

“During rehabilitation, I had the time to rearrange my life. I would have preferred to stay longer…” Patient ( 2017, 13 February), Co-creation session. November), Personal interview.

A heart failure seems to leave a sign not only on a physical level but also on a psychological level. Accepting the consequences of heart failure for the patient seems to be one of the biggest struggles and unfortunately, there is no solution to fix these psychological worries other than aid programs and the long process of acceptance. Some patients find it difficult to come to terms with their new situation and it can take months until it dawns on them that they have to change their lifestyle to prevent another episode.

“I worry about getting out of breath when exercising so I don’t do certain sports anymore - my biggest lifestyle change was giving up tennis.” Vass, J. - Patient (2016, 10 November), Personal interview.

“The ‘Burying one’s head in the sand’ group. They are not listening to the borders of their body and are super eager to sport.” Koops, R. - Rehabilitation Physiotherapist (2017, 31 January), personal interview.

“I used to cycle up the mountains, now I can’t do it anymore”. Patient (2017, 13 February), Co-creation session.

LACK OF REALISATION A heart failure seems to leave a sign not only on a physical level but also on a psychological level. Accepting the consequences of heart failure for the patient seems to be one of the biggest struggles and unfortunately, there is no solution to fix these psychological worries other than aid programs and the long process of acceptance. Some patients find it difficult to come to terms with their new situation and it can take months until it dawns on them that they have to change their lifestyle to prevent another episode.

In relation to the recognition of one’s own body limits, there is a lack of realisation about the symptoms of a heart failure or in general, factors that might compromise cardiac health. Most patients seem to have little or no awareness of physical symptoms until the very last moment, even when hospitalised. However, a heart failure indirectly teaches some patients a great lesson about listening more carefully to signals of their body and mind, but this can also lead to over worrying and nervousness.

“In the hospital I didn’t think I was very “bad, but I was.” Patient (2017, 13 February), Co-creation session. 20

“I couldn’t put my finger on what was wrong. I didn’t realise that I had suffered a heart attack and the event actually evolved over a week.” Vass, J. - Patient (2016, 10 November), Personal interview.

SELF-REFLECTION

YOLO (YOU ONLY LIVE ONCE) MENTALITY VS. FEAR OF RISK

“Realisation happens in little things...”

“I feel well but I need to be cautious”

Patient (2017, 13 February), Co-creation session.

“What am I worth?”

A patient’s attitude towards risk can change drastically after a heart infarct. Most patients fear the consequences of risky behaviour to the point that they limit themselves during activities. On the other hand, the life threat of an infarct can stimulate patients to adopt the carpe diem philosophy, to make their desires coexist with a life long diagnosis.

Patient (2017, 13 February), Co-creation session. The heart failure moment seems to represent in most cases a tool to reflect on life and identify patterns that need to change. Being able to self-reflect is essential to conduct an effective rehabilitation path. Selfreflection encourages introspection to learn more about one’s fundamental nature, and in this context to possibly recognise causes of a heart infarct. Most patients seem to be able to reflect, however, support in this sense is still very marginal and provided inconsistently within healthcare systems.

“I can no longer be reckless” Patient (2017, 13 February), Co-creation session.

ADHERENCE TO MEDICATIONS AND SIDE EFFECTS

“When you’re younger it’s worse: the first disease, they have to medicate for longer (because life expectancy is longer)”

“Above anything else, taking medication is the most important in aftercare. If you do nothing, at least take your meds!”

Pouls, P. - Pharmacist (2016, 15 November), Phone interview.

Han, Q. - Designer (2016, 29 November), Personal interview.

Many patients struggle with the long term adherence of their medication. The number of pills can vary between 8 and 5 and some of these medications have severe side effects for the quality of life of patients. There seems to be a misunderstanding that medication is less important as time goes by, which resultantly puts patients at risk in the future if they become less vigilant in taking their pills. The mindset and understanding of the importance of adhering to medications can be influenced by different factors. The age of the patient, for instance, is crucial, since young patients struggle with the side effects more than older patients. 22

“In a scale X Y, effect and side effect, a drug with high effect and low side effect comes out the best, such as viagra, it has effect straight away, they forget the side effect. While aspirin you can’t possibly feel the effect (because it’s on your heart and pressure), but you feel a lot the side effects. This is a blocker, people can’t believe in it, they can’t believe that aspirin is good for them!”

“In young patients (40-50 years), the beta-blocks cause erectile dysfunction and statins cause tiredness, muscles problems, pain, to quote some patients “I feel like I am 80 years old” Bellamoli, M. - Cardiologist (2016, 13 November), Skype interview.

“It’s [medication] all very slap-dash” and “Sometimes I take them all at once!” and “I probably miss a pill once every month [because of flexible and difficult work hours].” Vass, J. - Patient (2016, 10 November), Personal interview.

Pouls, P. - Pharmacist (2016, 15 November), Phone interview.

a recent study of HF patients across 15 countries indicated that 50–80% of individuals never or rarely adhere to these recommendations.”

“National patient surveys have shown that patients are less likely to take a medication if it does not correlate with a noticeable beneficial effect. Unlike analgesics, antiemetics, or antibiotics, many medications in the armamentarium against cardiovascular disease have a preventive mechanism that does not demonstrate noticeable symptom relief to the patient.” Baroletti and Dell’Orfano, 2010, 1455-1458) Adherence to medication can guarantee a long life expectancy, but skipping pills seems to be common among patients. They either do not see or perceive physically the good effects of medication, or do not understand, forget or decide to ignore the reasons why they need to take them.

(Zhang et al. 2015, p 927-934) 23

DESIGN FOCUS

“In the short term (≤ 6 months), cognitive behavioural strategies such as those used in motivational interviewing, and strategies that enhanced patient self-efficacy for exercise have been successful in increasing exercise in intervention groups by 25–30% compared with controls. [...] These strategies included goal setting, exercise prescriptions, problem-solving, feedback, positive reinforcement, and group interaction, and were primarily part of studies with a clear theoretical framework. Education alone was not effective.”

We decided to focus on the topic of patient identity crisis after a heart failure. We made this decision because we see more potential as designers to generate change with a humanistic and less medical approach on this part of the patient rehabilitation experience.

(Conraads et al. 451-458)

The implementation of easy communication tools between the patient and doctors must be promoted but cannot be enforced. We believe that the professionals who committed to a more personal and empathic communication with their patients will pave the way for the future of healthcare and become a standard. From research it is apparent that some medical professionals are able to generate trusting and open communication with patients, and there is a

“Self-efficacy can be developed through supervised exercise training, peer support and seeing peers to undertake exercise, realistic goal setting, and support from family and friends.” (Conraads et al. 451-458)

Fig. 3 Clustering process of all the painpoints

The topic of communication between the patient and medical professionals deserves particular attention and represents a great design domain for improvements, since a range of issues regarding communication became apparent in research. Whilst this issue is rooted in the systemic nature of healthcare, we decided to treat communication as an opportunity rather than a limitation.

belief that these professionals should lead by example. The market offers a variety of apps to optimise medicine intake and tailor it to the patient’s lifestyle, such as MedApp. Moreover, there are several examples for general monitoring of heart rate, sleep and activity tracking, such as Fitbit or Smartwatch. However, this is still a reactive approach to a preventative issue. In fact, the problem was explored further which became evident to be the patient’s mindset. It is safe to say that even with the most persuasive technologies, an intrinsic motivation to adjust to a new lifestyle and regain confidence is a stronger tool to prevent second episodes of heart failures. This research lead to us exploring further.

“HF patients face multiple competing priorities in their dayto-day lives, and goals related to functional autonomy and good social relationships are often viewed to be equally as important as physical well being.” (Jaarsma et al. 114-120) 25

During the co-creation with heart patients and experts, we included a brainstorm session in which participants were invited to think of ideas to solve the problem of their persona (doctor or patient). This was input for the next concept development phase in our project, where we planned to build on ideas of patients and experts in line with our usercentred process. Ideas of participants from the co-creation were primarily formed around the topics ‘self consciousness’ and ‘a better connection between doctor and patient’.

PRELIMINARY DESIGN IDEAS

Fig. 5 Close-up from a few design ideas

IDEAS Ideas that evolved from the topic ‘self consciousness’ were, for example, a selfreflection mirror to stimulate reflection among patients. Or a sort of Tinder for peer patients in order to get in contact with each other and help during rehabilitation. A creative booklet for doctor and patients which includes more background information about hobbies and lifestyle was an idea that evolved from the topic ‘better connection between doctor and patient’. Also the change of interior of the consulting room in the hospital would help to build a better connection. The participants envisioned a more subtle and Fig. 4 Overview of all the design ideas that arose from the Co-Creation session

warm interior with a couch, some chairs and a painting on the wall, to ease into a calm and relaxing conversation mode. Other ideas that evolved from this session are visualised in Figure 4. Another so-called ‘open brainstorm’ was organised, whereby need statements in the form of questions were presented, and design students generated solutions for each question. A few interesting ideas arose from this session which are attached in Appendix 2.

As a result of prior research and design ideas, the platform GOALS has been designed to address the pain points of patient identity crisis, communication with medical professionals and the role of a partner. The platform pays attention to setting relevant lifestyle goals and rebuilding your identity.

VIEW THE DEMO HERE

CONCEPT; GOALS

GOALS is a self-reflection tool based on self-determined goals. By giving support in formulating goals in different areas (body, mind, food…), it helps the patient to visualise his/her progress in different aspects of his/ her adjusted lifestyle after a heart failure. Secondly, by being a “partner tool”, the platform helps to externalise feelings and confront patient-partner couples with new milestones of their life after a person’s heart failure. In fact, the main feature of GOALS is that it encourages social and reciprocal support

Fig. 5 Close up of GOALS during evaluation with a patient

between the patient and his or her partner. This feature of the platform addresses the pain point of stress and suffering of the person close to the patient, who also has a very influential role in the patient’s life and recovery process.

HOMESCREEN

To address the problem of communication between the experts and patient, it was decided to bridge each party with the implementation and presence of our platform at all phases from discharge from the hospital to the rehabilitation program and eventually, to the autonomous secondary prevention at home. The platform needs to be introduced when the patient is discharged from the hospital as it is designed to be introduced during the CHATFUNCTION rehabilitation program, so that the patient slowly and sustainably integrates it in his life. The storyboard on the next page explains more in depth the steps that the patient and partner go through and what the role of the platform is and how it supports them.

GOALS

experience flow

Tijdlijn

Goals formuleren aan de hand van thema en STAR methode Ziekenhuis

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HOW? I will eat 2 peices of fruit a day as a snack at work or home.

TRACKABLE: You want to be able to monitor progress. To do this, you need to track your performance frequently. State your goal so that it is measurable and trackable by time and quantity.

Lakeside Golf Club

A R

Today I passed the halfway mark of my goal!

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Lakeside Golf Club

Today I passed the halfway mark of my goal!

March

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Pieter is onlangs nauw ontkomen aan een hartaanval en deze gebeurtenis heeft een enorme impact op zijn leven gemaakt. De stress die hij ervaarde omdat hij boventallig was verklaard en op zoek was naar een nieuw baan heeft onbewust toch veel gevolgen voor zijn gezondheid gehad.

Pieter werd ‘s avonds wakker met pijn op zijn borst. Zijn vrouw

Na drie dagen in het ziekenhuis te hebben gelegen mag Pieter

Lianne was meteen gealarmeerd en belde de ambulance. In het ziekenhuis is hij meteen gedotterd en

naar huis en is hij nog steeds aan het bekomen van wat hem allemaal is overkomen. In het ziekenhuis heeft

werd er een stand geplaatst.

hij veel informatie gekregen van de cardioloog en de verplegers, en het valt hem zwaar dat hij bijvoorbeeld vier weken niet mag autorijden.

Goals

Nu een week na zijn hartinfarct, zit Pieter achter zijn computer en

In de tussentijd heeft Pieter ook zijn vrouw Lianne uitgenodigd voor het

Pieter is samen met zijn vrouw Lianne in het ziekenhuis en wacht op

Als Pieter, Lianne en Lise de resultaten samen bespreken

ontvangt hij een email met informatie over het platform

platform. Uit het informatiefilmpje is namelijk naar voren gekomen dat

de afspraak met Lise, de revalidatie coach. Nadat hij vorige week op het

komen ze tot de conclusie dat Pieter en Lianne samen een aantal

GOALS. Hij herinnert zich weer dat de revalidatie verpleegkundige hem hierover heeft geïnformeerd.

GOALS een zelfreflectie platform is waar je samen met je partner of naaste aan deel neemt. Zo stimuleer je elkaar en kun je elkaar scherp houden.

online platfrom van Berhoven 3 vragenlijsten heeft ingevuld zijn zijn resultaten naar de revalidatieafdeling gestuurd. Lise heeft de resultaten vooraf bekeken en was onder de

doelen gaan stellen. Ze gaan samen de informatie module volgen, en Pieter gaat deelnemen aan het fysioprogramma.

Timeline

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Lise legt uit dat het platform hen ook de mogelijkheid biedt om de

Pieter is weer terug in het ziekenhuis. Pieter en Lianne hebben de applicatie De afgelopen weken heeft hij samen de afgelopen weken goed gebruikt. Er

Pieter besluit te focussen op drie goals. Meer fysieke beweging in de

Lianne wil voor zichzelf ook een aantal doelen opstellen. Lianne heeft niet per

Nadat ze tijdens het exit gesprek de doelen hebben gesteld, kan het monitoren beginnen. GOALS biedt de

Iedere maand doet GOALS de suggestie om de tijdlijn met de

Dit proces kan voor lange tijd doorgaan. Als patiënt en partner

doelen te monitoren op de zogenaamde tijdlijn. Door foto’s te

met Lianne actief deelgenomen aan de informatie module en was Pieter

staan verschillende foto’s in en Lianne heeft zelfs feedback gegeven aan

vorm van golven, gezonder eten door twee maal per dag fruit te eten en

se hartklachten, maar ze heeft wel een aantal grote risico factoren

extra mogelijkheid om na het uploaden van een activiteit een emotie aan de activiteit toe te voegen.

vooruitgang van de doelen van de partners uit te printen. Dit wordt

denken dat ze hun levensstijl zodanig hebben aangepast dat ze geen hulp

maken, in te checken op bepaalde plekken of korte notities te schrijven over hoe het gaat met de doelen, monitor je je eigen vooruitgang. Tegelijkertijd kun je

wekelijks twee keer in het ziekenhuis voor het fysio programma. Vandaag staat is de laatste keer en gaat Lianne mee omdat ze na afloop van het fysio programma een ontslaggesprek met

Pieter. Nu Pieter klaar is met het revalidatie programma vraagt Lise hen hoe ze de komende tijd hun gezonde levensstijl willen voortzetten. Lise vraagt hen na te denken over

meer ontspanningsmomenten creeën door regelmatig te lezen.

doordat ze rookt. Lianne wil daarom stoppen met roken en meer fysiek bewegen om de risicofactoren te beperken.

Dit werkt als een soort van indirecte reflectie, doordat Pieter en Lianne bij elkaar nagaan hoe het komt dat ze bijvoorbeeld boos, blij of teleurgesteld zijn. Doordat de partners via de tijdlijn ook feedback aan elkaar kunnen geven en goed van elkaar weten waar

geprint op een standaard formaat zodat het makkelijk is om te printen. De offline reflectie helpt de partners om een gesprek aan te gaan, doelen bij te stellen en indien nodig nieuwe

van het platform meer nodig hebben, kunnen ze ermee stoppen.

indruk van de QoL vragenlijst. Ze heeft het idee dat Pieter onbewust

ook zien hoe het gaat met de doelen van je partner en kun je

Lise hebben.

nieuwe doelen.

ze mee bezig zijn, kunnen ze het hier ook in het echt over hebben.

doelen te formuleren.

de dokter in ieder geval laten zien wat hij de afgelopen tijd gedaan heeft om

veel stress heeft en het is zaak om hier tijdens het revalidatie proces aan te werken.

elkaar feedback geven.

Ze besluiten met zijn drieën dat het even goed is om twee concrete doelen op te stellen, en samen vullen ze de doelen in GOALS in. Pieter vult twee doelen in, en Lianne een.

Mocht de patiënt een terugval krijgen en bij de dokter langsgaan, dan kan hij

zijn levensstijl aan te passen. Samen met de dokter kan de patiënt dan weer eventueel nieuwe doelen stellen.

Our design solution is based on the extensive research gathered in earlier phases of the project. Therefore, our solution itself is inspiration for how the Hartstichting could apply design to the insights we discovered. The reflection tool is an example of one design implementation that could benefit heart patientâ&#x20AC;&#x2122;s rehabilitation experience in a variety of areas, but of course there are multiple ways this can be achieved through design.

IMPLEMENTATION ADVICE

WHAT CAN THE HARTSTICHTING DO? The Hartstichting has the capability to involve future partnerships to expand and develop our design solution, or alternatively to generate new ideas based on the insights we have gathered. Partnerships could include other student teams or startup organisations in the field of design, engineering or healthcare. Moreover, our research insights could be explored further 34

Fig. 6 Evaluation of concept GOALS with a patient

by the Hartstichting or other students teams to generate more depth to our findings. The Hartstichting has the capability and resources to implement positive change for heart patients. By considering our research insights within future innovation decisions, the Hartstichting may create more personal changes for patients and truly improve their recovery experience. Through the expertise, connections and wealth of knowledge that the Hartstichting has available, our design solution could be made reality. To do this, a pilot study would need to be conducted and external parties such as programmers, healthcare experts and designers would need to be involved. Also the role of the coach needs to be developed and defined.

Throughout the project we came across various opportunities for the Hartstichting. Our three biggest opportunity insights are presented here, relating to patient involvement, transparency of research projects and results, and a transition towards e-health for the future.

PRACTICAL TAKEAWAYS

INVOLVE PATIENTS Having taken part in the Slimmer Leven challenge in February 2017, we noticed there were no heart patients at the event. The opportunity for patient-innovator collaboration has incredible potential to generate more meaningful solutions and design ideas. How can we innovate for patients when we do not know their perspective? We suggest the Hartstichting to invite heart patients to innovation events in the future to enrich the input and outcomes 36

Fig. 7 Close up of post-it during Co-Creation session

of ideas and solutions. TRANSPARENCY During the early phases of our project, we noticed that it was challenging to gain a grasp of the (research) projects that are initiated in the Netherlands. The Hartstichting is the driving force behind heart related research and we believe that the Hartstichting can be more transparent in the research and projects that it supports. â&#x20AC;&#x2DC;Steun mijn onderzoekâ&#x20AC;&#x2122; is a good start, but only focuses on collecting money. What if these projects also communicate the status of their projects, the methods they use, the literature they consult and any preliminary outcomes? We believe that by being more transparent, communicating new insights and results of research projects that the Hartstichting supports, the Hartstichting could inspire and

support other projects focussing on similar issues. This would likely prevent repeated research and speed up future projects especially in their early phases. E-HEALTH Throughout the project we have come into contact with professionals who speak a lot about e-health, and the potential future benefits of e-health. With this in mind, we encourage the Hartstichting to place importance on developing heart rehabilitation departments with e-health in mind. Healthcare services are becoming more and more intelligent as technology capabilities grow, and the Hartstichting can use these developments to advance their care. We suggest to organise an e-health pilot study with real patients in a real rehabilitation program. 37

In collaboration with the Hartstichting, we have conducted a design research process. For the duration of one honor academic year, beginning September 2016 and ending May 2017, we have focused on heart patients in secondary prevention post heart infarct or suffering of angina pectoris. RESEARCH

SUMMARY

Initially, we conducted literature research to identify possible problems in the heart patient experience that have not been tackled from a design perspective. Fig. 8 One of the emapthy exercises during co-creation session

Meanwhile, we conducted several interviews with heart patients, caretakers, rehabilitation experts and medical professionals. The scope of these interviews was to empathise with the patients by hearing from all the stakeholders that play a role in their lives after they experience a heart infarct. The results of both the literature research and the interviews have been visualised in an experience map. The experience map has been a tool to analyse all the insights we gathered during the former phases and to highlight the major pain points that heart patients face before, during and after a heart infarct.

Fig. 9 Evaluation of GOALS with a patient

CO-CREATION SESSION

We decided to focus on the issue of patient’s

We organised a co-creation session for heart patients and their partners. The co-creation was open to anyone interested in giving their input on how to solve the main pain points of heart patients in secondary prevention.

identity crisis, since it seemed to be the least addressed on a professional level, yet the most emergent from the experiences of the patients we met. We try to solve it by leveraging on the role of the patient’s partner, or someone else close to the patient. Moreover, we try to make our solution also address communication problems between professionals and patients.

The co-creation session has been the milestone of our process. The creative process has been extremely eye opening and inspirational in bringing fresh, personal input to our research. Subsequently, we analysed the insights we gathered during the co-creation, so we discovered more pain points than the ones we highlighted during our preliminary research. We understood new issues that, together with our former research, can be clustered as follow: • Role of the partner and the social network • Communication in hospital and rehabilitation experience • Patient’s identity crisis • Adherence to medications and side effects;

A USER CENTERED APPROACH In line with our vision to address these pain points we have a comprehensive vision of actionable points. ORGANISATIONAL OPPORTUNITIES The opportunity for patient-innovator collaboration has incredible potential to generate more meaningful solutions and design ideas. We suggest the Hartstichting to invite heart patients to innovation events in the future to enrich the input and outcomes of ideas and solutions. Besides, a transparent communication on the project ran by the Hartstichting will make patients understand what it done for them and repetitive research can be prevented,

favoring a constructive way of doing projects by building on shared knowledge. Lastly, e-health is the frontier of healthcare and we encourage this approach, because these technologies can be used in the advantage of the Hartstichting to transform and provide customised needs tailored to the needs of heart patients. GOALS We designed GOALS, a self-reflection tool that helps patients to set goals and readjust their lifestyle for long-term wellbeing. The tool is to be integrated in the standard rehabilitation process and is designed to help both the partner and patient set goals with the STAR method. The couple can visualise activities, relative to their own or the other’s goals in the form of a timeline. In this way, GOALS helps the couple to commit to their objectives and helps both to open up about their emotions and feelings that emerge in this delicate phase after a heart infarct. GOALS has been evaluated with patients and a partner and with a rehabilitation program nurse.

This project in collaboration with Hartstichting has been a great learning experience and we hope that our research put a spotlight on some specific issues that heart patients experience in their secondary prevention.

CONCLUSION & CALL TO ACTION

SOCIAL CONTEXT Particularly we would like to empathise the importance of the social context and especially of the patient’s partner in this phase. In order to be supportive, people in the closest social network of the patient need to trained, educated and receive adequate professional attention. We learned from our research that a well prepared social network can have a great influence in the patient’s lifestyle. COMMUNICATION Secondly, communication among patients and experts in the medical and rehabilitation environment has a crucial role in determining

Fig. 10 End presentation at the Hartstichting

whether the patient will adhere to the recommendations he/she receives and how he/she will cope with the necessary lifestyle adjustments. We believe that a better preventive behaviour, on a mental and physical level, requires more extensive and personal treatment from experts. A better experience with each expert will pay off in terms of patient’s trust towards professional advice and motivation to change. SELF-REFLECTION Moreover, after research we believe that medicine and healthcare should maintain its reactive nature, while improving its understanding of patients, as beings with a whole set of needs that goes beyond their health condition. Self-reflection is a great tool to help patients address these needs and identify themselves, when an event, such as an heart infarct, unsettles them. However, self-reflection needs coaching and therefore, professionals must be trained to

be competent in providing coaching, in order to help patients to truly self-direct their life and bridge the gap between external care and autonomous care. PATIENTS’ PERSPECTIVE Lastly, the major insight that we learned from our process is that patients are the experts of their experiences. Their involvement in the innovation process of healthcare is essential to determine whether a concept is addressing relevant needs or not. Resultantly, we believe projects should include the direct perspective of patients to generate user-centred outcomes.

REFERENCES ACKNOWLEDGMENTS Firstly we would like the thank our coaches Roy van den Heuvel and Philemonnee Jaasma for their support, inspiration and guidance throughout our project. Secondly, we would like to thank Ellen Janssens and Raymond Wimmers, from the innovation department of the Harstichting, who gave us valuable and constructive feedback and connected us to hartpatients for the co-creation activity. Lastly, we would like to thank all the experts, participants and patients who worked with us in the research phase. Working alongside experts from different stakeholdergroups has been both helpful and inspiring. The experts have provided us with useful information and insights which have proven to be very beneficial to our project.

Baroletti, S., and H. Dell’Orfano. “Medication Adherence In Cardiovascular Disease”. Circulation 121.12 (2010): 1455-1458. Web. Conraads, Viviane M. et al. “Adherence Of Heart Failure Patients To Exercise: Barriers And Possible Solutions”. European Journal of Heart Failure 14.5 (2012): 451-458. Web. Hartstichting strijdt tegen hart- en vaatziekten | Hartstichting. (n.d.). Retrieved May 24, 2017, from https://www.hartstichting. nl/ Jaarsma, Tiny et al. “Comparison Of SelfCare Behaviors Of Heart Failure Patients In 15 Countries Worldwide”. Patient Education and Counseling 92.1 (2013): 114-120. Web. Zhang, Karen M. et al. “What Matters To Patients With Heart Failure? The Influence Of Non-Health-Related Goals On Patient Adherence To Self-Care Management”. Patient Education and Counseling 98.8 (2015): 927-934. Web.

CO-CREATIE

SAMENVATTING APPENDIX 1

CO-CREATIE WORKSHOP HARTREVALIDATIE

Dit is een samenvatting van de co-creatie sessie hartrevalidatie die gehouden is op 13 februari 2017. De co-creatie sessie werd georganiseerd door drie studenten van de TU/e in Eindhoven die werken aan een innovatieproject voor de hartstichting. Een co-creatie sessie is een vorm van samenwerking waarbij verschillende belanghebbenden invloed hebben op het proces en het resultaat van dit proces, zoals een plan, advies of product. Het doel voor de co-creatie sessie was het beter begrijpen van ervaringen van patiënten tijdens het ziekenhuis- en revalidatie proces, en om op basis daarvan ideeën te creeën om ervaringen in de toekomst te verbeteren. De co-creatie sessie vond plaats in het ReShape center van het Radboud ziekenhuis in Nijmegen. Aan de sessie namen acht personen deel; vier patiënten, een partner van een patiënt, twee zorginnovatie studenten en een PhD student die onderzoek doet naar ‘empowerment’ voor hartpatiënten.

Afb. 1 Discussie tijdens empathy map

EMPATHY MAP Na de kennismaking, werd de groep in twee gedeeld. Beide teams werd gevraagd naar persoonlijke ervaringen die ze tijdens hun hartaandoeningen en revalidatie hebben meegemaakt. Aan de hand van een ‘User Experience Map’, waarin de verschillende ervaringen en fases van het revalidatieproces werden gevisualiseerd, werden de deelnemers uitgenodigd om hun persoonlijke inzichten op te schrijven en in de

Afb. 2 Lezen van de inzichten door deelnemer

map te plaatsen. Om reacties te stimuleren en de deelnemers te inspireren waren aan deze User Experience Map ook inzichten uit eerdere literatuurstudies en interviews toegevoegd. Later zijn de resultaten vertaald naar het engels en de ervaringen van de deelnemers opnieuw geclusterd per categorie volgens de ‘affinity diagramming’ methode. De clusters die hieruit ontstonden waren als volgt, zie volgende pagina. 45

EMPATHY BOX Zorgen van partner Patient dokter communicatie

Gebrek aan aandacht in ziekenhuis Kwaliteit van leven versus angst

Medicijn inname

Gebrek aan realisatie

Vertrouwen en connectie met experts Eigen perceptie vs. perceptie van anderen over tijd Ziekenhuis is een rust moment

Zelfreflectie Vertrouwen in eigen lichaam

Confronterende ervaringen Revalidatie opties

Na het maken van de User Experience Map kregen beide teams kregen vervolgens de keuze om een stakeholder te kiezen, ofwel Patiënt, Partner of Dokter. Team 1 koos voor de dokter en team 2 voor de Patiënt. Beide teams kregen een doos overhandigd, de empathy box, waarin een specifiek voorbeeld van een stakeholder werd geïntroduceerd, alsmede een aantal opdrachten om deze stakeholder gezamenlijk verder te definiëren. De uitdaging voor de teams was om zich te verplaatsen in de schoenen van deze specifieke persoon, dit wordt de zogenoemde personamethode genoemd. Vervolgens discussieerde de teams om te ontdekken wat er verbeterd kon worden op een bepaald moment in het hartrevalidatie proces. Uiteindelijk leidde dit tot de POV, de point of view. Zie de resultaten hiernaast.

TEAM 1

Afb. 3 Verzameling foto’s en templates van de empathy box fase team 1 1

TEAM 2

Afb. 4 Verzameling foto’s en templates van de empathy box fase team 1

BRAINSTORM

PROTOTYPE & PRESENTATIE

Op basis van de inzichten die door de Empathy Box waren verkregen, gingen de teams door met de brainstorm fase. Hierbij werd de 6-3-5 methode gebruikt. 6 personen, ieder 3 ideëen in 5 minuten. Na 5 minuten werd er doorgedraaid en werd er voortgebouwd op de eerdere ideeën. Zo ontstonden er per team een 18 ‘rijen’ met ideëen. Na afloop van de brainstorm fase kregen de deelnemers ieder 3 stickers om de beste ideeën te selecteren. Uit de brainstormsessie kwamen zowel abstracte als een aantal concrete ideeën voort. In de analyse fase, die na de co-creatie plaatsvond, zijn deze ideëen geclusterd. De resultaten hiervan zijn hiernaast weergegeven.

Na een korte discussie werd de teams gevraagd een specifiek idee verder uit te werken met behulp van de materialen. Tegelijkertijd werden er door de teams korte presentaties voorbereid om het concept uit te leggen.

Afb. 8 Presentatie concept team 1

CONCEPT TEAM 1 Om Joop, de patiënt, te helpen om zelfbewust te worden en zijn levensvreugde weer te vinden, heeft team 1 het volgende concept ontwikkeld. De arts en de patiënt gaan voor een week van wereld wisselen. Het plan is dat de arts een week patiënt gaat zijn, zodat de arts gaat ervaren hoe het is om patiënt gaat zijn. De arts krijgt leefstijladviezen die hij ook echt moet bewijzen. Omgekeerd willen ze de patiënt ook kennis laten maken met de arts zijn leven. De arts gaat namelijk vaak zitten achter het beeldscherm en maakt dan bijna geen contact meer. Vanuit het oogpunt van de patiënt zijn zij benieuwd hoe het voelt om arts te zijn en hoe we meer begrip voor elkaars wereld kunnen creëren.

CONCEPT TEAM 2 Afb. 5 Brainstorming

Afb. 9 Prototype concept team 2

Afb. 6 Brainstorming

Afb. 7 Overzicht geclusterde ideeën

Om Leanne als arts vertrouwd te laten overkomen, heeft team 2 een concept ontwikkeld om een meer persoonlijke

gegevens te integreren tijdens de verschillende consults met de patiënt. Op deze manier kan de arts veel meer persoonlijke adviezen geven hoe de patiënt de leefstijladviezen dan zou kunnen integreren in zijn/haar leven. Het idee is dus dat er een boek is, dit zou ook een online platform kunnen zijn, waarin de patiënt en cardioloog samen alle informatie bijhouden van wat er gebeurd tijdens het pad van de patiënt. Daarnaast staat er ook persoonlijke informatie in, wat de patiënt graag doet in zijn/haar vrije tijd, hoe de sociale/thuis situatie er uit ziet en is er een plek waar patiënten hun vragen kunnen stellen. Aansluitend is er een overzicht van hoe de actuele status van het hart is, wat er besproken is tijdens de consults en de video van het hart die gemaakt is tijdens het dotteren. Tot slot bestaat er de optie om het persoonlijke boek / platform te delen met familie en vrienden zodat de persoonlijke patiënten reis voor betrokkenen ook duidelijk is. 49

DANKWOORD Voor deze co-creatie sessie willen we ten eerste alle deelnemers bedanken. Jullie enthousiasme en openheid heeft tot vele inzichten geleid die ons ernorm hebben geholpen in het ontwerpproces. Daarnaast willen we graag René van der Velden bedanken die als ons als moderator en vertaler heeft ondersteund. REshape Innovation Center bedanken we voor hun gastvrijheid en het beschikbaar stellen van de ruimte. Ook danken we Ellen Janssens van de Hartstichting voor haar support en het geven van de publiciteit rondom de cocreatie sessie. Tot slot willen we graag Roy van den Heuvel en Philemonne Jaasma, van de Designing Quality in Interaction group van de faculteit Industrial Design TU/e, bedanken voor hun coaching en feedback rondom het opzetten van de workshop.

APPENDIX 2 Afb. 10 Analyse fase, clusteren van inzichten

DESIGN IDEAS OPEN BRAINSTORM

Jolijn van Sleeuwen j.j.m.v.sleeuwen@student.tue.nl

Chiara Treglia c.treglia@student.tue.nl

Laura Power l.e.power@student.tue.nl

Afb. 11 Analyse fase, clusteren van ideeën

We organised an open brainstorm session whereby we placed questions from the perspective of a persona on the wall and we then asked design students to think of creative solutions. An example of a question was, ‘Andy is a patient. He struggles to understand the information about medication from his doctor. How can we help Andy?’ This activity was inspiration for us, to gain another outside perspective on patient issues.

Ideas to help a patient understand the purpose of his medications and to not forget medicine intake were, for example, to use large scale pills with an explanation inside during consults or to design special dishes with each medication clearly inside.

Ideas to make sure that patients understand the information of the doctor were, for example, to design a kind of checklist with supporting visuals which the patient can ‘tick’ during a consultancy. In addition, to use peer patients as co-learners when both patients

need to change the same lifestyle issues. Also, another idea was to develop a personal development plan for the patient in cooperation with the heart rehabilitation consultant. This specific idea was inspiration for our final concept, GOALS.

Ideas that evolved from the perspective of the partner, in order to make the partner less worried and anxious about the patient, were, for example, to work together on the health status of the patient, involve the partner in special heart rehabilitation programmes as well or an app that informs the partner about the patients being ‘good’.

Personal training, motivation training, focus on positivity and progress, keeping a diary and reflecting on progress are ideas that evolved from the statement, ‘how can we help a patient to regain confidence in body & himself after a heart infarct’.