This piece is the complete digital transcript of my master thesis book. I graduated from the Information Design master at the Design Academy Eindhoven in June 2016.
The medical consultation between healthcare professionals and breast cancer patients is the focus of the present research. This medical moment has been changing under the influence of different players and throughout time. Moreover, this change has been increasing exponentially through recent technological innovation that contributes to the patient’s empowerment.
According to my point of view, the information-exchange of the consultation moment presents a weak point: the information provision to patients is not tailored according to individual needs, values, and behaviours; and the existing system does not enable and encourage patient empowerment. Drawing on this issue, this thesis develops an approach and designs a system to respond and speculate on the need for a personalised and integrated patient’s healthcare experience.
This project aims not to design a new type of clinical tool or a solution for a particular issue; it rather gives a design evidence that existing systems need to be rethought. Speculating, through design, on possible scenarios offers space for new questions, new dialogue and new roles, as the design(ers) in healthcare. By applying this approach to the healthcare field, I hope to stimulate discussion and reveal choices and possibilities that exist beyond the constraints of the actual social, bureaucratic, and economic context.
1.1 Initial research
2. Complexity of the healthcare system
2.1 Information provision
2.1.1 Patients’ responses to information provision
2.1.2 Case study: cutting down time for consultation
2.2 Internet use for health-related knowledge
2.3 Consultation between healthcare providers and patients
2.4 The healthcare insurance company
3. Contemporary Shift
3.1 Available Technology
3.2 Contemporary shift: the people
3.2.1 Patient Empowerment
3.3 Contemporary shift: the system
4. Design perspective
4.1 Design role in the healthcare system
4.1.1 Early Information Design contribution to healthcare
4.1.2 Evidence-based Design
4.1.3 Contemporary contribution of design(ers) to healthcare
4.1.4 Design strategy
4.2 The project
4.2.1 Need and Vision
4.2.2 Design direction
5.2 Future research
1.1 Initial research
Healthcare is one of the most complex and multi-layered sectors of the Western society. It is characterised by many different players, an enormous amount of data and information, and high budget costs. Healthcare is also a story about people, their hopes and achievements, their care and kindness. A story full of many different experiences.
The challenges and pressures that the healthcare system has to face are vast and difficult, and they involve all players: from healthcare practitioners to patients, their families, and other caregivers.
Each aspect and player is deeply connected to the contemporary shift healthcare is dealing with. This shift has its ground in a social and cultural heritage, and it is promoted by the role of Internet and new technologies. The possibilities introduced by the digital innovation are influencing the healthcare system. The profusion of web sources and the increasing prevalence of mobile & connected devices and their affordable prices contribute to shaping the patients’ new position in being active participants in their health. The traditional patriarchal model in which the consultation between the doctor and the patient was the sole source of medical knowledge, has been subverted by an ‘Internet-informed’ patient who is accountable not only for his or her preferences but also for a knowledgeable position.
The consequences of the patient’s new role both affect the social-bureaucratic frameworks healthcare currently operates within and the healthcare functions. More specifically, the consultation between healthcare practitioners and patients represents the first setting for the contemporary shift’s application.
This medical moment is the focus of this thesis. It investigates the lack of a tailored and integrated information provision to the patient and speculates on an approach to enable and encourage patient empowerment. This aim is pursued through design. Information design offers the opportunity to relate to a complex matter, like healthcare, without being an expert. By relating to a more accessible content, the patient gains autonomy. Thus, the patient is empowered in his or her own healthcare experience.
This work aims not to design a new type of clinical tool or a solution for a specific issue; it rather gives a design evidence that existing systems need to be rethought. Speculating, through design, on possible scenarios offers space for new questions, new dialogues and new roles, as the design(ers) in healthcare. By applying such approach to the healthcare field, I hope to stimulate discussion and reveal choices and possibilities that exist beyond the constraints of the actual social, bureaucratic, and economic context.
This chapter is dedicated to the process of my investigation. It is characterised by difficulties, struggles, and positive achievements. My methodology is a chronological and non-linear example of a design process.
In the starting phase of the project, I naively intended to design and develop a tool for helping healthcare professionals in the communication with patients. The intentions are still laudable, but I found that getting in contact and collaborate with the Dutch healthcare providers was more a pipe dream.
My idea was to help clinicians in visualising insights of the health data that patients were bringing in the consultation room. The goal was to support shared decision-making and to enable an equal communication between provider and patient.
To achieve this, I needed personal health data, but mostly time and dedication from healthcare professionals. I ended up facing, instead, the impossible schedules of healthcare providers, and lots of regulations and privacy restrictions concerning health data. Moreover, I was looking for data on an alternative system — the one patients initiate by bringing their data — which is not entirely there yet.
I had a vision of what my design system could have done and in which way it could have helped providers in their daily activities, but simply I did not have the opportunity to set up a conversation where to discuss, articulate, and argue my points. I’ve experienced — from a lack of contacts — the healthcare system as a strictly organised and bureaucratic system that is quite difficult to enter.
I needed to develop a new approach to continuing dealing with the healthcare system. I used the obstacle of having no access to the system as an opportunity to reconsider my findings so far, and to set myself a different task.
I soon realised that among the healthcare players one has more freedom than all the others: the patient. He or she is involved in the healthcare system but is as well an external observer. Patients can incorporate a new system by bringing their health data into the medical consultation. This attitude represents an alternative and disruptive moment for the actual healthcare system.
An important part of this project is the focus on the empowered role of patients that have a knowledgeable position about their health conditions and the autonomy to embrace new technologies to support them in taking control over their treatment.
After four months of research, I have finally got the opportunity to collaborate with the oncology ward at the Catharina Ziekenhuis in Eindhoven. Together with a nurse practitioner specialised in chemotherapy treatment, I am now working on a system that improves the healthcare treatment experience of breast cancer patients.
The thesis is structured as follows: the first part serves as guidance for the present investigation.
The second section describes the complexity in a current European healthcare system, with a focus on the Dutch system, as the case study of this research.
The next section presents the changing position of the healthcare system and the patient under the influence of new technologies.
The fourth section is divided in two: the first part shows the potential of design by looking at early and contemporary implemented design explorations. The second part sketches the directions of the design project which develops on the present research.
In the fifth, I give a summary of the findings from previous parts and an outlook for future studies.
The last section includes some highlights of the interviews and small workshops with patients.
2. Complexity of the healthcare system
2.1 Information provision
Information provision from healthcare practitioners towards patients is a complex matter that involves different players and different communication media. This process becomes more difficult when the patient’s health conditions are severe or even life-threatening. The patient always receives a large amount of important information that he or she has to memorize in a short time span and, sometimes, to digest in a state of stress, worry, and discomfort.
The information is delivered both verbally and as written material. However recently there is a growing tendency to deliver also animated material, mostly explanatory videos or short motion graphic movies. The animated content has the benefit of representing a scenario of issues, and possibly related solutions in a way that the patient can find familiar and useful.
Alongside the animated material, quite often displayed in waiting rooms, Dutch hospitals are used to inform patients through many different brochures. There are in-house leaflets concerning the treatment, the therapies, the stay, and some general information about the hospital; and external brochures with medical information from independent organisations operating alongside the hospital. The patient can also find additional information on the hospital and independent association website and on the social media channels.
Healthcare stakeholders (doctors, nurses, hospitals, independent medical organisations, healthcare insurance companies) altogether deliver a vast amount of information to the patient, but for them it is complicated to track back if the patient actually refers to it and in which way the information material was useful.
Dutch hospitals have some instruments which allow the patients to share their experience and to grade their visit. If we consider the healthcare system as a bureaucratic machine, then the use of quality consumer methodologies, where the patient is asked to make an evaluation on a scale of preferences, it is a quite valid and general approach. But, according to me, on a profound personal level, the activity of sharing some highlights and downsides of the intimate experience is not enough to evaluate the specific single interaction of the patient with the healthcare stakeholders. I feel that the activity of scoring — on a numeric scale from one to ten — still leaves out lots of nuances that link the patient’s personal inclinations with his or her experience in the healthcare environment.
Information provision on one side and feedback on the other create the complex net of information exchange between patients and healthcare stakeholders.
Healthcare professionals can make a significant positive difference to people’s experiences of illnesses and of health services by offering good quality, relevant information in a caring way at an appropriate time.
It is possible to enable the healthcare practitioners’ contribution by designing an integrated system that incorporates information and that scales it down to the particular case of each patient. The experience of each patient is different in nature and needs and, therefore, deserves a specific attention, particularly in acute conditions of illness.
2.1.1 Patients’ responses to information provision
Delivering information at the right time is a challenging task that can be complicated by the fact that patients are never a homogeneous group.
This thesis takes as focus group young women (25-40 years-old), who have breast cancer and who are doing chemotherapy. Even in this precise case, the number of players, media, and the patients’ characteristics create lots of combination that are translated in very diverse ways of patients’ response to information provision.
In the breast cancer case, there are several healthcare professionals involved. During the treatment, the patient talks with:
- the nurse practitioner
- the nurse
- the oncologist
Three different healthcare profiles, each one in charge of delivering a distinct range of information regarding quality & quantity, and at a different time of the treatment’s development.
Another interesting aspect is the influence that the patient’s age has on the information provision.
The nurse practitioner involved in this project experiences that the way that younger and older patients react to information provision is really different. Elderly patients are used to get less information and to forget some of them. Therefore, the practitioner needs to introduce a defined communication language, which is, most of the time, connected to the use of an easier vocabulary and to the need of more time to the patient.
Younger patients seem to respond differently despite some sources have reported that 40%-80% of medical information provided by the physicians is forgotten immediately1. The greater the amount of information presented to the patient, the lower the proportion that is correctly recalled. Besides, almost half of the information that is recalled is incorrect1.
I believe that the retention of information can be increased by designing a tool that augments the oral exchange between the healthcare providers and the patient.
2.1.2 Case study: cutting down time for consultation
The number of breast cancer patients is growing in the Netherlands, but the number of healthcare practitioners remains stable. The healthcare stakeholders have to cope with this problem. That is the reason some sections of the oncology ward at the Catharina Ziekenhuis in Eindhoven are working on a pilot to halve the consultation time between the patient and the nurse.
To compensate this tremendous time loss, the patients on their first medical consultation with the nurse practitioner will receive more information material to careful study at home. At the second consultation, the patients have to be prepared to answer and ask questions on the explanatory material.
In this sense, it seems that the response to time shortage in direct consultation means more work & procedures for the patients. The time deficit might also lead to less attention to a personalised quality of care. In fact, the information & materials delivered beforehand are equal for all patients facing the same treatment.
Deliver good quality information and material to compensate less medical consultation time is a contemporary challenge for most of the healthcare systems. I believe that the design of a digital system which integrates all spread sources of information and delivers them to the patient in a planned way can already represent a benefit in facing this challenge. The digital nature of this tool can offer the possibility to embed different content (e.g. animated and textual one) and to manage the renewal of information over time.
2.2 Internet use for health-related knowledge
The healthcare environment is not the only source of information for patients.
“All patients get influenced by family, people around, and web-sources mostly” — Angelie van des Bosch, nurse practitioner at Catharina Ziekenhuis Eindhoven
Part of this investigation focuses on the role and influence of online medical information and its impact on providers-patients relationships (not on the effect of family members).
The Web has become a primary source of health information. Reuters1 reported that on average 53% of Americans search the Internet for health Information. The numbers in Europe are lower, but the projection shows continued growth. A recent European Union survey on online health information2 found that, for Europeans, health professionals are still by far the principal source of health information (45,3% of EU health population) followed by traditional media (tv, newspaper). Nevertheless, on average, nearly a quarter of Europeans (23%) use the Internet to obtain health information. Denmark and the Netherlands are on top of the list with 40% of their population. Interesting are not only the numbers but also the motivations. Patients do not see the Internet as a replacement for the health professionals, although patients’ responses may vary according to individual needs.
A study of British Internet users indicated that people go online after the consultation with the healthcare professional for confirmation of the information received and to gather additional information3. On the flip side, Matthew Harrison, from Helix Centre, writes that:
“Increasingly patients go to their doctor with a self-diagnosis rather than a set of symptoms. The doctor is expected to conﬁrm rather than identify”
The digital revolution brings significant changes. Patients are exposed to a wealth and multi-layered kind of information, from peer-reviewed research to Wikipedia, to patient forums. For the patient, it is sometimes hard to develop a position on healthcare matters, especially when concerning personal and maybe life-threatening health situations. That’s why I believe that nothing can replace the expertise and dedication of health professionals.
In response to this information-seeking activity there is an increasing number of health-related websites, now becoming available for up-to-date answers to medical questions. On the other hand, physicians have expressed concern regarding access to misinformation and patients’ interpretation of available online content5. In fact, the availability of health content may lead the patients to more complex information which is not easy to understand and digest.
The patients’ behaviour in looking for online sources and listening to somehow similar stories from a close community, can not be avoided. But it can be guided. Patients and family members can be supported towards a more responsible and sustainable behaviour, and the physician can actively assist patients in the information-gathering process. In the end, an improved relationship may result6.
2.3 Consultation between healthcare providers and patients
There has been a shift in the role of the patient from passive recipient to an active consumer of health information. This change, supported by the daily use of existing technology, goes hand in hand with a transformation of society as a whole.
In the Sixties, a culture of adverse reaction to authority and a taste of distrust towards the establishment developed. This phenomenon is known as the counterculture of the 1960s and grew, in a broader sense, from a confluence of people, ideas, events, issues, circumstances, and technological developments which served as intellectual and social catalysts for an exceptional rapid change7. Those anti-establishment tendencies together with the quite simultaneous diffusion of communication mediaE, and the first Internet protocol9, created the ground for the circulation of information, which had its boost with the invention of the Web in the late 80s.
It is possible that some remains of the anti-establishment culture of past decades have been transported to the relationship that patients have with healthcare providers, hospitals, pharmaceutical companies and, more recently, to healthcare insurance companies.
Health professionals are responding to this new patient’s character in different ways. Whether the provider’s attitude is collaborative or obstructive, the consultation moment’s nature has radically changed. The traditional model of the health professionals as main providers of information to patients regarding their diagnosis, prognosis and treatment options, is now shifted to an exchange of information with two main protagonists.
Until recently, many healthcare professionals felt that patients were unable to cope with bad news and should, therefore, be kept ignorant of many details of their illness10. However, with the easy access and availability of information through the Internet many patients are no longer satisfied with this mindset. They want to be fully informed and be involved in any decisions. Therefore, there is now a growing interest in providing information to support patients’ participation in choosing treatments and deciding on strategies for managing their health problems. Much well-intentioned effort goes into developing such material, but good intentions are not enough to guarantee quality and usefulness. If patients are to be active participants in decisions about their care, the information given to them must accord with available evidence and be presented in a form that is acceptable and useful.
Clear communication between patients and health professionals is one of the essential components for the delivery of high-quality healthcare. Lack of understanding of medical terms and healthcare information by patients can lead to decreased adherence to treatment recommendations, adverse health outcomes, decreased satisfaction towards the clinician and other healthcare practitioners11. So on one end, it is advisable that healthcare professionals use a verbal language that makes the patients comfortable with the quality and quantity of information received. On the other end, patients should put more attention and responsibility on their health.
The challenge of the healthcare system is shared between the healthcare providers and the patients. Philips Design Director, Kurt Ward states that:
“There is the need to co-design a future in which both parties take the initiative and transform each other”.
2.4 The healthcare insurance company
The Dutch healthcare system is divided into three compartments:
- Long-term care for chronic conditions
- Basic and essential medical care (e.g. GP visits, short-term hospital stays, specialist appointments)
- Supplementary care (e.g. dental care, physiotherapy)
Health insurance in the Netherlands is mandatory, and it is covered by two statutory forms of insurance:
- Zorgverzekeringswet (Zvw), often called ‘basic insurance’, covers common medical care, and it is financed from compulsory private insurance
- Wet Langdurige Zorg (WLZ) covers long-term nursing and care, and it is funded by social insurance
While Dutch residents are automatically insured by the government for WLZ, everyone — with some exceptions — has to take out their basic healthcare insurance (basisverzekering). If you don’t take out insurance, you risk a fine.
Private insurance companies must offer a core universal insurance package for the universal primary curative care, which includes the cost of all prescription medicines. They must do this at a fixed price for all. It is illegal in The Netherlands for insurers to refuse an application for health insurance or to impose special conditions. The system is 50% financed by payroll taxes paid by employers to a fund controlled by the Health regulator. The government contributes an additional 5% to the regulator’s fund. The remaining 45% is collected as premiums paid by the insured directly to the insurance company.
In contrast to many other European systems, the Dutch government is responsible for the accessibility and quality of the healthcare system in the Netherlands, but not in charge of its management.
In the specific case of female breast cancer patients, the insurance company covers all the costs, but might impose some time pressure on the patients.
In the unlucky case of mastectomy (breast amputation), a woman has to decide whether to get a breast reconstruction within two years. The time span is too short since most of the patients spend more than one-year fighting cancer and going through all information, procedures, and consequences.
The nurse practitioner involved in this project states that:
“the pressure operated by the insurance company makes the healthcare not so friendly”.
3. Contemporary shift
3.1 Available Technology
We’re living in an age where it’s never been easier to collect personal health data outside of a hospital setting. The profusion of web sources and the increasing prevalence of mobile & connected devices that measure all aspects of human physiology contributes to this new phenomenon. People start using mobile health tracking and wearable technologies to monitor their sports performance, and then this attitude moves fast from tracking leisure activities to monitoring healthcare. This preference is just one of the key elements that caused the health data trend to emerge. Alongside, in fact, there is the technology innovation that has decreased its first costs significantly; conversely, the health costs have been rising. Overall, these three factors have created a critical moment in the market.
Nowadays plenty of design & tech firms produce mobile and connected devices that support patients in self-monitoring behaviours. Two of the biggest sectors, fitness and healthcare, will grow by 600 percent to $2bn in 2019, according to Juniper Research2. The ranks’ top ten is occupied by the well-known US firms Apple, Fitbit, Jawbone, and Misfit. Fitbit and Jawbone offer a large contingent of products for less than 100$. Apple, instead, offers HealthKit that is a central platform for health information that works with third-party apps and gives control over the information that the user shares. Health, the app for iOS, integrates fitness and health information: from the heart rate, calories burned, and cholesterol to diagnoses, results of lab tests, and medical examinations. The app gives the user an easy-to-read dashboard for his or hers fitness and health data.
HealthKit has been developed with the help of clinics, hospitals, and healthcare providers from all over the world.
The interest in managing and storing health data is not only shared by tech companies but also by the financial services sector even if in a different way. Financial players, in fact, produce and promote products that encourage customers to reduce health risks and change behaviour while gathering data.
John Hancock, an American insurance firm, created an Apple Watch app where customers can record their activities and earn up to a 15 percent discount on their annual premium based on healthy patterns of behaviour. In Australia, Medibank — a health insurer — and Flybuys — a loyalty program — give customers points for providing their fitness data and for making healthy decisions. The confluence of these factors is creating a new set of currencies that is worth money: health data.
Despite the commercial interests of the tech and financial companies, the technological innovation is bringing some possibilities and disruption into the healthcare system.
The impact from this cocktail of self-serve devices and data is emphatic. Therefore, the attention reserved for the topic is growing at the point that Healthcare Stakeholder and politics have to cope with this tech-driven inclination.
The possibilities that the technology brings to the healthcare system are linked to the idea that an active participation of patients in their care will facilitate not only a positive personal behavioural change but also minimise avoidable and costly healthcare emergencies. Technology will enable more productive and timely interactions between patients and healthcare practitioners and will provide an early indication of changes in personal health situations.
The technology hopes and preconditions are there, but it seems that the Healthcare system — especially the European ones which are experiencing the technological disruption later than the US healthcare system — is not fully ready to embrace these changes.
First, the healthcare system is not moving at the same speed and ease as the tech world and the single patient does. The Healthcare system is highly bureaucratic and operates inside a complex and specific socio-economical framework. If from one end, this nature guarantees the healthcare system’s role as an authority on our health, on the other prevents new technologies to get in easily.
The second issue is related to the accuracy of the apps and connected devices. In fact, while medical devices do use standards, current fitness devices have no such benchmarks about how they record data2. Research scientists at the Center for Digital Health Innovation have compared the data reported by consumer wearable devices to relevant clinical gold standards in multiple studies over the past two years. They’ve found that very few devices currently on the market perform with the reliability one would expect from a medical-grade device.
The third issue is connected to the quantity of the health data. Self-monitoring is no longer reserved for a small, tech-savvy customer segment which means that the value and amount of data produced have to be taken into account. “I’m an oncologist, and I have these patients who are proto ‘quantified self’ kinds of people,” says Andrew Trister working at the nonprofit medical research organisation Sage Bionetworks. Trister says that his colleagues have had patients bring in their own wearable-gathered data, too, and they’re “really taken aback” by it. It’s very difficult, clinically, to interpret trends that come out of such information, he says:
“They come in with these very large Excel spreadsheets, with all this information, I have no idea what to do with that.”
Health is no longer a complex cost managed by a closed set of entrenched players3. I believe that the empowerment promoted by new technologies to patients is certainly a great thing, on the flip side I share some similar doubts of the healthcare system in fully embrace this technological innovation which consequences are not completely outlined yet.
3.2 Contemporary shift: the people
The technological innovation and the availability of information contribute to a cultural shift. People no longer can be called patients. Brian Ahier, an expert on healthcare and technology, explains the notion of healthcare consumer:
“The difference between a patient and a healthcare consumer: A patient simply receives care, a consumer makes informed decisions”.
Although I don’t share the necessity to introduce a different notion of the patient, I feel it is extremely relevant to stress the attention on the patient’s new role. The patient, by obtaining more easily medical information has a different position in the healthcare environment. Such ‘ideal’ patients express a high degree of interest in learning about their illness, treatment, and related implications.
The availability of information supports patients in investigating information about their conditions, nevertheless the results of this new diffuse attitude are various. From one side, there is the patient who is demanding information but is not interested in taking responsibility for making shared decisions about treatment. On the other side, there is a proactive kind of patient whose attitude is going beyond the simple self-information behaviour.
We can compare these patients to hackers who design personal, cost-effective solutions to manage their health. Patients, tired of the regulatory delays in the healthcare system build their own DIY solutions.
There are lots of examples in the monitoring for Type 1 diabetes. The Guardian reports the story of Tim, a 31-year-old British citizen, who tired of waiting for the pharmaceutical and medical device companies to come up with new, affordable ways to improve the lives of diabetic patients, has taken matters into his hands. Tim bought an old continuous glucose monitor (CGM) from the internet and used his skills as an IT specialist to re-engineer it so that it communicates, via a self-built Tic Tac box receiver he keeps in his pocket, with his mobile phone and his smartwatch — something even the full-price version will not do. The total annual cost is about £1,000. With a couple of taps on the screen, his blood glucose level is displayed as a graph5.A similar monitoring system costs around £4,000 a year to the NHS, the United Kingdom’s healthcare system.
Patients like Tim want more involvement:
“I now have more information about my condition, so I better understand what I am doing. I feel more in control — and that is a massive improvement”,
he says. Diabetes is all about managing data on medication, food and blood glucose. The pressure on health related resources indirectly encourages the patient to embrace DIY methods to self-control their disease.
The consequences of this approach both affect the legislative frameworks of the healthcare and the system itself. On one hand, patients are frustrated to wait to get checked by healthcare facilities and, therefore, provide a response by themselves; on the other the implications related to the use of these self-designed devices are risky.
What’s both amazing and disappointing about these DIY solutions is that they’re so personalised. This means that what is useful for one patient might not turn to be as fruitful to another.
Tim’s aim is in fact to publish his work, so more people can benefit, but not to commercialise it as a product. A similar business idea will run up against all sorts of regulatory barriers. Diabetes is a potentially life-threatening condition, and patients come to rely on the devices they use, which must work reliably and predictably. If modified methods were used before going through a rigorous testing and approval process, they could put patients’ health at serious risk.
Patient hackers recognise that they need to strike that balance between making their methods available to empower other patients, and not putting patients at risk by giving them sophisticated tools they aren’t ready to use6 or tools that might fail. The patient hackers can be considered a movement that has been developed in response to what people see as the slow pace of development, the opaque attitude of commercial companies and the heavy-handed approach of the regulators in the healthcare domain.
Alongside patient hackers, there are quantified patients members of the quantified-self movement — QS movement. It incorporates technology into data acquisition on aspects of a person’s daily life concerning inputs — e.g. food consumed, quality of surrounding air, states — e.g. mood, arousal, blood oxygen levels, and performance — mental and physical7. All this self-knowledge, acquired by self-tracking technology (mobile & wearable technology), empowers people and allows them to set and reach specific goals. Users feel to be in better control of their health and well-being.
Ian Clements started self-tracking himself — mostly exercise, weight, and general health indicators — with the intention of living a long time. This goal became more focused when he was diagnosed with terminal cancer. This set off a more comprehensive mission of self-tracking to figure out which lifestyle changes and supplements were helping him to live longer. The lifelogging activity let Ian experience a longer life and assisted him, over the years, in being in control of his disease.
One interesting aspect of the QS movement is that there is a prevalent attitude by its life loggers to share their data and promote dialogue around a particular topic. This behaviour particularly fits patients who are seeking for information and insights in a personal situation. Patients can now understand themselves better, through available technology and data gathering activities, and count on a stable community of people experiencing similar issues. The result is a better-informed patient enabled to bring data that can contribute to the quality of medical consultations and treatments.
“The value of data is as big as our ability to safely translate it into meaningful insights”- says Jurre Ongering, Programme Developer for Care projects at Waag Society, Amsterdam.
In this sense, the role of design and designer is essential to give meaning to data through visual translations. Patients are already sketching their way to use existing technologies and self-tracking methods in order to be active participants in their health. Technological innovation profoundly contributes to patient empowerment.
3.2.1 Patient Empowerment
Patient Empowerment is an important contribution to the healthcare challenge in supporting an increasing number of people to live their lives healthier. For the empowerment to succeeded some major changes have to be made: the healthcare system needs to create and promote a patient-centred culture in which patients are informed and involved in all phases of their treatments. Patients need to receive information at an appropriate time in order to be enabled to co-operate with healthcare professionals in managing treatment and care.
The patient need to take the responsibility — e.g. healthier lifestyle — of his or her empowered role towards the healthcare system. Empowered customers can help to redesign a more personalised system so that instead of feeling like a nameless commodity their own actions and choices will matter11. People will start to express their own preferences and set their goals. This attitude creates commitment and empowerment.
The job of healthcare providers is about inspiring, treating and supporting but not pushing the patient into set solutions.
Healthcare should become a dialogue between patients and providers, and so everybody will be motivated for the better by empowering individuals and the system alike. Healthcare stakeholders and governments can, therefore, redesign their working practices based on what is conceivable rather than merely achievable. The healthcare providers will collaborate with patients, families and the local community to make behavioural changes successful. The patient feels more responsibility and the system can benefit from avoiding useless hospitalisation costs due to patients’ bad behaviour.
Patient Empowerment brings along a new idea of the patient and the shared decision-making process. The patient is now at the heart of services. Empowered patients will better understand how to navigate among the many players in the healthcare system and will feel confident to ask for the information they need. Empowerment is the key to this extraordinary paradigm shift11.
3.3 Contemporary shift: the system
The disruption brought by the empowered patient into the traditional healthcare system has important consequences.
First of all, the relationship between patient and healthcare providers suffers from the cultural shift of the patient’s role. Patients are more informed and demanding and, therefore, the medical interactions change. The traditional model in which the healthcare providers was the only source of medical knowledge is not longer existing.
The response of healthcare professionals to the empowered patients can work out in three ways.
In the first scenario, the relationship remains health professional-centred. Health professionals, especially those with poor information technology (IT) skills may feel their medical authority being threatened by the information the patient brings and will respond defensively by asserting their ‘expert opinion’. They will use the short consultation to quickly and authoritatively steer the patient towards their choice of action12.
The second scenario is where the health professional and patient collaborate. Many patients have not only the time but also the motivation to search for information regarding their health problems. And health professionals have the skill and knowledge to analyse the information and assess the relevance to the particular patient13. In this scenario, physicians cooperate with patients in changing the concept of whose responsibility it is to ‘own’ the information14.
The third scenario is where the health professional recommends websites to patients, an activity that is comparable to a sort of ‘Internet prescription’15. This scenario is presuming that health professionals themselves are educated and interested in the digitisation of the healthcare.
Moreover, this last scenario is particularly relevant to overcome long-distance care. Berlin university hospital Charitè is implementing an approach that merges medicine and telematics called telemedicine. It makes possible to overcome the barrier of distance and provide diagnostics, consultations and emergency medical services in rural areas as needed.
It’s clear that the last two scenarios are better aligned to the contemporary challenges of the healthcare system. Nevertheless, the expertise of healthcare providers is essential to any treatment. No clinical or design tool can, in fact, represent a final alternative to consultation methods with healthcare practitioners.
The existing technology and the new role of the patient push the healthcare system to a new challenge: design a collaborative care. To do so, the healthcare system has to be ready to train its professionals to respond to this new approach by providing appropriate information and by fostering patients’ responsibility.
In such a contemporary shift, the role of design and technological innovation is crucial to fulfilling the needs and expectations of both systems and consumers, and to meet the financial constraints.
4. Design perspective
4.1 Design role in the healthcare system
Design can be a major contributor to the contemporary cultural shift in healthcare. When I think about design in healthcare, I consider its double essence: as a ‘verb’ and as a ‘noun’. The former relates to a way of looking at and a method of thinking about the healthcare experience; the latter refers to coming up with tools, and systems for healthcare.
The role of design in the context of this investigation serves two main purposes: reduce complexity in healthcare, and make content accessible. Design contributes to addressing and solving some intricate knots and, therefore, improving the quality of the healthcare experience. Information Design, thanks to a clear and effective visual representation of data, can improve the communication between all stakeholders.
4.1.1 Early Information Design contribution to healthcare
The power of data visualisation in the healthcare field goes back to 1858 when Florence Nightingale, a British nurse, used data to enforce change. While nursing wounded British soldiers during the Crimean War, she realised that much more of them died from infections or other problems contracted while they were being treated in what were often filthy, fetid military hospitals than from their battle wounds. Having failed to convince the government and the public of this through letters, essays and lectures, Nightingale decided to explain the situation visually by presenting statistical evidence in the form of diagrams like the one in the report ‘The Causes of Mortality in the Army in the East’. The full report named ‘Mortality of the British Army’ was packed with an analysis in the form of charts and tables of data collected from her time at Scutari, a British hospital base.
By presenting the facts so clearly, Nightingale won the support she needed from the health department, whose subsequent actions resulted in mortality being cut by two-thirds.
Nightingale’s work is the first effective data visualisation in the healthcare field. Her work changed the course of history, enabling pro-active change through data collection.
Also in the UK, and around the same period (1854), another excellent example of displaying evidence for decision making was presented. Dr. John Snow found a connection between Cholera deaths and a water pump in Broad Street, in London. He methodically collected and wisely placed the data on a map giving so a causal explanation of the events; he made quantitative comparisons with who died from cholera and who escaped the disease. Dr. Snow showed his findings to the authorities responsible for the community water supply. The pump-handle on Broad Street was removed, and the epidemic soon ended.
In both cases, the methodic quality in displaying and assessing quantitative evidence enabled discoveries and ultimately led to solutions. Florence Nightingale and Dr. John Snow looked for patterns in data and visualised their findings through design. Only in this way, they were able to make their discoveries understandable by a broader public.
The discipline of Information Design has the ability to reduce complexity and make content accessible. When such characteristics are applied to life-and-death situations, the explanatory visual language has a substantial impact.
4.1.2 Evidence-based Design
Today, the ‘evidence-based’ approach is certainly relevant in the medical field as well as in its intersection with design.
In 1984, Roger Ulrich published what is widely regarded as a ground-breaking study in hospital architectural research. He analysed the progress of 46 patients after surgery, and he found that patients with windows looking out on a natural environment took less time to recover compared to those whose windows faced a wall1.
This research laid the foundation for an approach to designing healthcare environments and products that did not limit itself to optimising aesthetics and primary functional attributes, but also aimed to use design interventions to enhance the positive therapeutic effect and thus create healing environments2.
This area of research and practise is called Evidence-based Design (EBD). EBD is the process of basing decisions about the built environment on credible research to achieve the best possible outcomes3.
Evidence-based design (EBD), by echoing the concept of Evidence-Based Medicine (EBD), is a relatively new field, borrowing terminology and ideas from disciplines such as environmental psychology, architecture, and neuroscience.
To comprehend the value of Evidence-based design, it is necessary to define the term ‘credible research’: it uses scientific methods, which means the formulation of testable hypotheses, the evaluation of data, and a statement conclusion that is supported by the findings5.
EBD is about knowing the effect of design on the users, an important and laudable goal. Evidence-based design implies a kind of designer who incorporates research and who accepts the complex challenges of conducting research in the design practice. In this task, a great facilitator is the natural collaborative predisposition of designers: they can benefit from studies conducted by others and from collaborations with researchers, medical providers, and patients. Whatever way they find to get content and knowledge, the main goal is always the same: becoming familiar with the healthcare field, its participants, and its needs.
Alongside the tendency of working within multi-disciplinary teams, designers can also benefit from being disconnected from the healthcare system. Designers are neither scientists nor healthcare professionals, they might not come up with actual working tools or effective solutions, but they will offer a new point of view on the medical field.
4.1.3 Contemporary contribution of design(ers) to healthcare
In the previous chapter, I stated my position in supporting the urgent need and the important role in including design not only in building beautiful and functional products but mostly as an approach that enables communication and interaction among healthcare players. As a designer, I feel that the best way to show the potential of design is to look at implemented design solutions and speculate on possible future scenarios.
St Mary’s Hospital in London hosts a team of designers within its buildings. Helix Centre is an exploration into how design can transform health when designers, clinicians, and patients come together to explore and develop new ideas that can improve the NHS, the healthcare system of the United Kingdom.
Over the years, and in most cases, the standard responses to challenges in the healthcare field seemed to be: more procedures, more administration, more management, and, therefore, more costs and sometimes less attention and time to the patient needs.
Helix Centre is developing a new approach in response to complex healthcare issues. The design team, together with healthcare stakeholders, designs and implements low-end innovations and scalable solutions. When the Liverpool Care Pathway — a controversial protocol for clinicians to provide care to terminal patients — was phased out, Helix Centre helped in communicating end of life care guidance to clinicians in a useful and practical way. Helix produced a portfolio of communication products, including a strong, clean and simple visual identity, using appropriate formats to present the guidance to clinicians in the front line, including posters, leaflets and apps.
These designers have an interesting position since they are able to make ideas tangible, develop ideas into prototype products, processes and services while focusing on simplicity, clarity and accessibility of the content of communication.
I believe we should nurture the collaboration of the healthcare industry with external experts such as designers. Healthcare can benefit from designers because of their ability to design user-centred services, tools, and communication. Designers can help healthcare improve even more by daring to ask questions that seem obvious. These questions are important in a setting, where the work pressure is so high that the processes tend to continue in the same way for years without applying much reflection.
While pressure on healthcare varies from country to country, healthcare stakeholders all share one common challenge: to maintain standards while reducing costs. But “If the solution is not affordable, it’s not a solution”7.
That’s why I support the Helix Centre’s model where designers focus on frugal innovations, coming up with cost-effective solutions that don’t have huge barriers to entry and that are scalable7.
If, on one side, there are designers that focus on low-end, well-designed, and user-centred solutions, on the other there are designers which speculate on future scenarios by provoking alternative thinking on the established medical domain. Whether the first design innovative and effective solutions, the second look for accessible alternatives that are not necessarily designed to be implemented.
In this second direction is the OpenSurgery Initiative, where the designer Frank Kolkman investigates whether building DIY surgical robots, outside the scope of healthcare regulations, could plausibly provide an accessible alternative to the costly professional healthcare services worldwide8. Surgical robots, in fact, represent large capital investments from hospitals. In addition to this, not everyone has access to basic healthcare. Therefore, the possibilities introduced by new technologies make possible to ask the question:
“What if you could, for example, create your own DIY surgical robot outside the scope of regulated healthcare?”8.
“Based on the ideological development of collective expertise fuelled by other than purely economic motives and enabled by digital technologies, there is the idea that you can do almost anything from home on a near professional level without being obstructed by conservative regulations. Returning power and responsibility to the individual and attesting to a sense of self-determination”, says Frank Kolkman.
In OpenSurgery, Frank Kolkman is looking at how Youtube serves as an indicator of the present situation. Driven by the lack of affordable alternatives to the professional healthcare system, communities of mainly uninsured US citizens use Youtube to share videos showing them performing medical hacks on themselves. There is again a reference to ‘hacking’ , but this time, the term let us think more about the possible negative consequences connected to this practice.
Ultimately, the result of this speculative investigation is a well-designed and working prototype of a surgical robot which aims is to provoke alternative thinking about medical innovation by challenging the socioeconomic frameworks healthcare currently operates within.
The OpenSurgery case is particularly relevant because it creates discussion about the social and bureaucratic implications of design & technology applied to the healthcare system. To what extent design & technology can affect the healthcare field in a beneficial way? Whatever the answer is, I think that there is an important quality in nurturing collaborative working methods.
Another design project that intersects with the healthcare system is La Cura, an Open Source Cure for Cancer. Salvatore Iaconesi, the engineer, artist, and hacker behind the project, was diagnosed with brain cancer in 2012. He felt dissatisfied with the way the medical system was handling his situation. Many times he said: “I felt as if I disappeared”. Salvatore created La Cura to avoid reducing human life to the simplicity of a set of protocols, procedures and services, that is to say, to be replaced by the disease itself9. La Cura — Italian for the term ‘cure’ — is a website where Salvatore shares his own health data asking for a participatory open source interventions for his cancer.
After asking for his clinical records, Salvatore found that the digital format was not allowing him to make the content available on the Web. He used his IT skills to open the medical records and to convert the data into multiple formats — spreadsheets, databases, metadata files in XML and video, image and sound files — that would allow people of multiple cultures, skills, professions and inclinations to access, use, recombine and redistribute it.
Since la-cura.it was online, the responses have been incredible. More than 200,000 people have visited the site, and many have provided videos, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures. The website has caught the attention of more than 90 doctors and researchers who offered information and support.
Thanks to his project, Salvatore Iaconesi redefines the word ‘cure’ — as a recovery and healing process — and describes a story of the will and desire to live as an informed and empowered human being. Ultimately, his contribution opens discussions on the role of open health data and the break some taboosa. After Iaconesi’s contribution, the Italian Government, in fact, has been debating a motion to make all patients’ medical records more open and accessible.
To me, La Cura is a fascinating case since it presents how technology and art create space for some very diverse conversation on health. Salvatore intends the ‘cure’ as a human, never ending, dialogue where experts maintain their status, but where technology, art, science, and human’s will can collaborate together towards new possibilities.
Finally, La Cura is a strategy designed to create a collaborative healing process thanks to the interest and effort of active participants. This plan also embraces a wider, more profound discourse about the ways in which information circulates digitally.
4.1.4 Design strategy
The three mentioned design initiatives — Helix Centre, OpenSurgery, La Cura — show that there is not a unique, correct, and approved strategy for designers in approaching the healthcare domain. Design is a broad and flexible field, and designers contribute to solving problems, to offering different perspectives, to improving communication, to creating experiences, to reducing complexity, and to addressing issues.
Designers in healthcare don’t have the same responsibilities of medical providers and, therefore, are able to look at the system from a more separated but still sensitive point of view.
The design strategies applicable are various and depend on the needs of patients and others healthcare stakeholders.
Technology is a fundamental tool for implementing any kinds of design strategy. First, the amount of health data and information produced and consumed is such that avoiding new technologies to gather and manage data is not an option. Second, technology can influence the scalability of the design intervention, which aspect is particularly relevant when designing for the healthcare system. Third, technology makes content widely available in terms of time and location.
On top of that, thanks to a critical and able use of technology and the collaboration with responsible practitioners and patients, designers can find patterns in data and point out useful insights.
As technology, also, the development of a visual and interactive language is a major part in elaborating a design strategy. It is crucial that the user, the person finds himself or herself comfortable with the graphic elements of the designed system. Its visual and interactive features need to make the healthcare experience trustable, intuitive, and tangible.
4.2 The project
This thesis investigation started with observation and research on the patient’s cancer treatment experience. After a first orientation in the healthcare field, I have narrowed down my attention to a specific type of cancer: the breast cancer. Then I’ve elaborated an initial hypothesis to work on.
As an Information Designer, I focused my attention on the information exchange between healthcare professionals and patients and I found a weak spot. The standard information provision towards the patient is not tailored according to the individual’s needs, values, and behaviours. On top of that, the patient is not encouraged to become an active participant in the treatment process. My exploration speculates on this information gap.
4.2.1 Need and Vision
I am interested in designing a personalised and empowering experience for the patient. The patient holds an interesting position in being involved in the healthcare realm on one end and being an external observer on the other. The patient’s privileged nature represents the point of view through which I explore the healthcare system. In addition, the patient has more freedom to incorporate new systems than the established healthcare setting. The patient can embrace, in a faster way, the power of new technologies without having to meet bureaucratic regulations, and eventually can bring the technological disruption back into the healthcare system.
I truly believe that the Internet and digital technologies allow people to take control of some events, but I am interested in discovering to what extent can this be true for healthcare?
My research explores new ways design can make technology more meaningful and relevant to our lives, both now, and in the future, by thinking not only about new applications but the implications as well.
In this investigation, I’ve mentioned few times that design & technology contribute to ‘reduce complexity’. To me, this expression means to ‘make complexity accessible’. Through visual representation of data, patients can gain autonomy, and set their empowered roles.
For me, design gives the opportunity to show how existing systems are reaching their effective limits. Dunne & Raby state: “design is a means of speculating about how things could be — to imagine possible futures”10. I think that speculation through design on possible future scenarios offers space for new questions and new discussions. By applying this approach to the healthcare field, I hope to stimulate dialogue and reveal choices and possibilities that exist beyond the constraints of the actual social, bureaucratic, and economic context.
4.2.2 Design Direction
Although the design project and its discoveries are not integrated into the present research, I would like to sketch out few choices and challenges related to design output. Before doing so, I need to describe content and context of my design. In a simple way, the former is data, texts, graphics and animated contents; the latter is the medical environment — consultation and waiting rooms mostly — and the familiar environments — like home.
I felt there was the need to create a space where the physical and digital realm could meet: ending up designing a web app was a quite natural step for me.
I am aware that, in this way, I cut out many other solutions, but I intentionally decided to design a familiar and close format to the final user — the patient. The web app introduces a new approach to healthcare in terms of content and experience. And I was concerned that adding the complication of a new format — device/system — would have made the cancer treatment experience not engaging or too difficult to understand for a layman. In fact, while a more specialised design output would have been valuable and useful for experts, this project aims to improve the healthcare experience of a highly heterogeneous group: the patients.
It seems that the variety of the content and the amount of information delivered to the patient is scattered over different communication channels. My approach brings data and information together in a single and integrated digital format. Furthermore, the digital system is designed to select and visualise meaningful information strictly related to the patient’s experience at that specific moment.
Designing a web app allows me to identify mobile as a primary communication channel. It is very important to underline that what matters is screens, not specific devices.
One major challenge of this design project is to develop a level of interactivity and a human visual language to fit the purpose. A sensible direction can be operating visual translations through visualisations to make the information exchange between healthcare practitioners and patients more trustable and tangible.
The dynamic consultation moment between patients and healthcare professionals is the focus of this thesis. It investigates a weakness of the healthcare system in failing to supply a tailored integrated information to the patient and in lacking to encourage and regulate patient empowerment. Therefore, the present project aims to give evidence that existing systems need to be rethought, by designing a personalised and visual patient’s healthcare treatment experience. In this visualisations serve information explanation and interactions contribute to making the healthcare experience tangible and engaging.
Moved by the interest and the need to collaborate with healthcare professionals in a field which is far beyond my professional knowledge, I had to develop a visual language to operate the translation of complex data and information into a tangible and interactive digital experience. This language allowed me to rethink and design the information exchange of the medical consultation.
This thesis investigation shows me that my role as a designer, in being enough separated but still sensitive towards the cancer experience, offers the opportunity to look at the healthcare system from a different perspective and to develop, therefore, a new approach to the topic. For me, by speculating through design on future scenarios, it is possible to reveal choices and possibilities that exist beyond the constraints of the actual social, bureaucratic, and economic context.
When I reflect on the role of designers in healthcare, I think about the increasing importance of designing tools and experiences that enable and encourage people in making informed choices in a collaborative environment. Ultimately, I believe that designers can contribute to the healthcare system by daring to ask questions that seem obvious. I feel that these questions are important for the healthcare setting, where the work pressure is so high that the processes tend to continue in exactly the same way for years without applying much reflection. Hence, by designing the healthcare experience, this explorative design project wants to offers space for new questions, and to open a dialogue on the role of design(ers) in healthcare.
5.2 Future research
My short exploration into the healthcare system helped me realise that the contribution that a discipline as Information Design can give to healthcare can be wide and significant.
My research explores new ways design can make technology more meaningful and relevant to our lives, both now, and in the future, by thinking not only about new applications but the implications as well. I believe that information design & technology represent a contribution to individual’s autonomy, intended as a condition where a person is enabled to explore a complex domain, as healthcare, without being an expert. In the exploration of this thesis, Information design contributes to making the healthcare’s complexity more accessible. According to this direction, I think that there are the need and the room for further and deeper investigations.
Alongside the study of information design’s possibilities and limitations, another urgent aspect for future research is the development of a design strategy for healthcare.
When designing this project I always had in mind a fundamental goal: to design a system, not a close product. For me, a system is open, it offers space for future implementations and enables people to make further improvements. In this sense, my thesis investigates just a defined part of a single system — a web app for the medical consultation — designed for a specific focus group and context — breast cancer patients doing chemotherapy.
Thinking about a design strategy instead offers the opportunity to design a full ecosystem of products and systems in order to respond and speculate to a broader range of healthcare challenges.
Ultimately, I think it is interesting to research how design can transform healthcare when it is taken into account from early stages in the medical field. Design and designer can contribute to creating cost-effective solutions that have no huge barriers initially and that are scalable.
The investigation and the design project have been supported by various discussion and confrontation with healthcare providers and patients. This section collects some relevant findings and materials.
During the period of this research, I had the chance to have several meetings with Angelie, a nurse practitioner, specialised in chemotherapy of the Catharina Ziekenhuis in Eindhoven. She gave me the time and the tools to understand the complex structure of procedures, schedules and players involved in the treatment of the breast cancer within a Dutch hospital.
One fundamental point we stressed from the beginning of our conversation is the management of information. The healthcare system is well structured and applies protocols to the information provision. But each patient presents different needs and therefore the nurse practitioner has a laborious role in tailoring the information.
Over the time, Angelie has developed a simple model that supports her verbal communication with the patient. Medical consultations are mostly verbal and quite often Angelie found pretty useful to sketch the treatment process: the visual evidence helps the provider to clarify the process while facilitating and testing the patient’s comprehension.
Information provision: age factor
Angelie specified to me that her approach is different per patient and so it is the dialogue. The age factor offers an interesting case that helps understand the difference in approach.
The way that younger and older patients react to information provision is really different. Elderly patients are used to get less information and to forget some of them. Therefore, the practitioner needs to introduce a defined communication language, which is, most of the time, connected to the use of an easier vocabulary and to the need of more time to the patient.
Younger patients seem to respond differently as they understand and digest the information quickly and tend to come up with doubts and questions.
Information provision: personal and social aspects
Another interesting case is the influence that the personal and social sphere has on the information provision. During the interviews, I found a similarity of answers in the specific case of a young patient with children.
The nurse practitioner, from one side, and a young patient, from the other, both reported their experience. Angelie mentioned that young patients with children have more worries, so they tend to ask more questions, be more specific and trying to maintain any aspects under control.
The patient had a really specific and critical approach to medical consultation, she was taking the time to digest the information and then discussing are doubts with the practitioner.
Journalise personal data
In the section, I share the stories of two patients, of different age, that have been gathering information and data bout their experience.
The above image is a precious evidence and a piece of a personal story connected to the importance of writing down questions and answer. The patient has carefully designed her way of recording and then consulting the information on the most common tool, a diary. In each spread, the left side is reserved for questions gathered from different settings — medical consultations, personal research, media and conversations with other people — and the right side is reserved for the answer that the patient obtains from the practitioner.
The above picture shows the second patient going through her diary and looking for notes about her treatment. The information hosted in the diary is then correlated and supported with various materials taken at the hospital or external organisations.
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All footnotes to the text are missing because Medium does not have footnotes (and I don’t like their workaround to use normal notes).
- AidA is not a clinical tool. It is not intended for commercial application and currently serves only academic purposes.
- AidA is not designed to substitute the expertise and dedication of the healthcare professionals.
- The personal and professional views of the experts consulted for Informed Interaction are always enclosed in quotation marks.
The prototype nurtured by this research is called AidA, an app that encourages patients empowerment and provides tailored provision of information. Learn about the design and the process!