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This blog post comes from a very personal place. Having experienced health professionals deny my right to have equal (to their) access to my medical records because of an organizational tradition of keeping them only inside the clinic (and not with the patient), I felt left out, disengaged, and like I had no power over my well-being. This feeling of exclusivity and powerlessness burnt the back of my mind and made me ask myself – why was I denied this right? Shouldn't I have as many rights and access to medical information if it regards my well-being? How can a/any healthcare system/government expect their people to take better care of themselves if they discouraged from accessing relevant medical information?  Furthermore, later – how can we, as a society, and we, as designers, develop such services/a health care system that can work both for the organization and its patients? This paper is looking at whether the design thinking approach can be applied to provide patients with more opportunities for a more proactive role in their well-being, but also opportunities of engagement and ownership over it as well.

Why is this important?

Rise in chronic cardiovascular diseases and a general trend of ageing of an ever-growing population will require an increase in health professionals, medicine, and medical infrastructure. According to the World Health Organization, ‘chronic diseases contributed approximately 60% of the 56.5 million total reported deaths in the world, and approximately 46% of the global burden of disease’ (https://www.who.int/nutrition/topics/2_background/en/).

At the same time, and also according the World Health Organization (WHO), the number of people aged 60 years or older will rise from 900 million to 2 billion between 2015 and 2050, which accounts to an increase from 12% to 22% of the total global population (https://www.who.int/news-room/facts-in-pictures/detail/ageing).

If we were to look at the diseases that constitute the chronic diseases that the WHO refers to, it is ‘cardiovascular diseases, obesity and diabetes’- diseases that require constant management not only from the medical care professionals, but a great deal of attention from the patients as well. On top of it, the WHO states that these diseases ‘started to appear earlier in life’. Taking all these factors into account, one can conclude that in the future, people will be ill for a longer time than they are now for two reasons: a. because they will develop the diseases earlier in life and b. because they will live longer. However, do we have what it takes to provide the medical services future populations will need? Do we have enough medications, medical professions, knowledge, and time to meet all of the people's needs? Moreover, how do we do this now?

Today, we have 7.7 billion people worldwide that are serviced by 10-15 million doctors, with a ration of one doctor per 513 potential patients, not to mention the geographical disparity and quality of medical services. This means that on one hand, we have one active stakeholder (the doctor) to over 500 inactive/passive subjects that receive medical care. But what if we could transform these over 500 potential patients into active actors? What if we could engage them in the process and empower them to have as much responsibility and agency over their well-being? I believe the world's population must be empowered to contribute to their health in a greater way than it does now. 

A proactive population that is enabled to manage their well-being will require fewer medical resources – resources that already at this time, the healthcare system does not have. NHS (of the UK) estimated in 2019 that the healthcare provider in the UK 'would need 5,000 extra nurses every year – three times the figure it currently recruits annually’. A 2011 WHO report estimated that by 2035, there will be a deficit of 12.9 million skilled health workers such as midwives, nurses, and physicians (A universal truth: No health without a workforce, 2011, p. 5). And it is precisely the health professionals that engage with patients the most. Precisely, nurses are the ones to administer medicine, record, and monitor if a patient is following their treatment plan and their well-being progress – jobs that can be easily done by the patients themselves, if educated, invited and enabled to do so. It what the RED (research and development) team of the Design Council (UK) has discovered:

'After carrying some rapid design research with Angela [who is diagnosed with Type II diabetes] and others like her, the RED team concluded that education was not the problem – people mostly knew what they should be doing to manage their diabetes. What Angela struggles with was putting that knowledge into practice in her every day life (…) The answer lies in motivation, not medicine, and the problem is not one that can be solved by more resources in current medical system' (Burns et al., 2006, p. 12). 

Similar research was carried out by Fluxx (a London-based product and service innovation company) in the homes (and schools) of young adults diagnosed with cystic fibrosis and their families. The researchers and designers form Fluxx undertook ethnographic research to learn about the lifestyles of the said patients (Edgley, 2019, workshop).

However, the role of education cannot be discarded altogether. Education is the first step on our way to a more patient-participant healthcare system. The more educated you are, the more you understand about your health condition, the more you understand about it, the more you can challenge your health care provider, the more you can challenge, the more you can change.

'Patients gain knowledge of their health conditions, treatment plans, or healthcare access through providers, communities, or policy interventions. Research suggests that after gaining knowledge, patients are more likely to develop confidence. With confidence, patients can be motivated and gain self-determination abilities, such as the ability to communicate with their providers and express their health concerns and preferences. Self-determination empowers patients to seek more health information, acquire more knowledge of their health from providers and other sources, and become more confident (Chen et al., 2016).

The role of education is already being discussed in the scientific community under the concepts of patient activation and patient empowerment (Ibidem, 2016); thus, it is unnecessary, for the moment, to go deeper into the subject matter. Instead, let us look into who is defining what the problem is.

Who and how defines the problem?

The problem with the patient participatory health care system is that someone with the necessary (political) power to make changes has to recognize the role of patients and name them as stakeholders. It is their health that is at stake, so they must be involved. One way to recognize the role of the patients in taking care of their well-being would be to examine the organigrammes of the field of health care. Having examined several of them (USA, UK, the Republic of Moldova, Romania – Figures 1-4), none of them feature the public or better yet the patient on them. One might argue that it does not need to; that it is the structure of the organization that these are supposed to show. But does this not give away the exact thinking that limits our understanding of the problem?

In an example described in the Chapter 5 (by Paul Sternberg) of the Leading and Managing a Social Enterprise in Health and Social Care, an investigation into the deaths of a thousand patients between January 2005 and March 2009 in a hospital in Mid-Staffordshire concluded that several systematic failures such as ‘somebody else’s problem attitude, failure to take feedback into account, failure to communicate concerns, willingness to tolerate poor standards, failure of leadership, and putting the needs of staff before the needs of the patients. However, the author does not deny ‘the importance of standards and efficiency’, but points to the ‘danger when a managerial logic becomes the sole guiding principle of an organisation rather than a set of modern civic values rooted in a people’s overall well-being’ (Oham and Macdonald, 2016, p. 96).

The author goes on and looks into successful examples when several grassroots organizations were able to deliver medical services by engaging the end-users (patients) and changing practitioners and people's perception of care from treating what is wrong to a preventive model (Campaign to End Loneliness, Ageing 2.0, Catch 22) due to the adoption of the Social Enterprise model, which became 'part of the drive to combine a new social and financial approach to the delivery of health and social care' (Ibidem, p. 98).

Although there already is at least one way in which authorities have already recognized the patient's role and invited them to be proactive in preserving/improving their well-being. The US Affordable Care Act (ACA but also known as Obamacare), which features patient-centred approaches in several sections throughout the act that relate to improving medical staff training, better medical research, and development of new patient care models (Sections 3021, 3501, 6301, etc.)

Another example of patient as stakeholder recognition is the WHO global strategy on integrated people-centred health services 2016-2026, which presents a conceptual framework for integrated people-centred health services and visually puts the person in the centre of the concept (figure), followed by family and community and only after that by healthcare service providers and other structures and bodies engaged in maintaining people’s well-being.

The report also presents a set of five strategic goals for integrated people-centred health services: 1. Empowering and engaging people; 2. Strengthening governance and accountability; 3. Reorienting the model of care; 4. Coordinating service; and 5. Creating an enabling environment (https://apps.who.int/iris/bitstream/handle/10665/180984/WHO_HIS_SDS_2015.20_eng.pdf?sequence=1). WHO made the empowerment of people as their first strategic goal. The organization suggested several ways in which this goal can be achieved, such as education, peer support, community-delivered care, and, most importantly, shared decision-making and self-management. 

But shared decision-making and self-management cannot be achieved without access to medical information, including one's health records. We know at least of one instance when a mixed-method assessment was conducted in eight small and medium primary care practices in Virginia, USA, to see if patients are inclined to use electronic records for their benefit. An electronic platform (IPHR – interactive preventive health record) was developed and connected to the electronic medical records the clinics were already using that allowed the IPHR to extract medical data, analyse it and provide 'tailored list of preventive and chronic care recommendations' (Krist et al., 2014). The patients that visited the practices were invited to join the platform by creating an account and complete a health risk assessment for the system to start to devise a personalized prevention plan.

The results of the entire exercise show that 25.6% (28,910 patients) of the patients that used healthcare services in the designated period – from 2010 to 2013, joined the platform. Of these, 59.5% joined the platform immediately after their first visit to the practice. The patients would log for a medium of four times into their accounts and would spend an average of seven minutes per session on the platform. In other words, there is evidence to sustain that there is an interest, if not a demand, in having access to one’s medical information and harnessing this for the co-creation of non-traditional health services. This statement is also supported by the numerous web-based applications devised to self-management of one’s well-being, starting with applications to track one’s fitness, daily water intake (Fitbit, Waterlogged, etc.), carbohydrates intake (CarbsControl and etc.) and nutrition in general (Fooducate, HealthyOut, etc.) daily sleep (SleepCycle), menstrual cycles (Clue, My Calendar, Eve, etc), applications for guided meditation and stress management (The Mindfulness App, Headspace,  buddhify, etc.); many of them integrating many of the above-mentioned functions just in one app (Fitbit, etc.).

A similar approach was by Fluxx in designing the Ada – your health application. They asked themselves: ‘How to create an experience that evoked enough trust for people to share their most intimate details?’. To answer the question they carried out in-depth research across different cultures into people’s motivations and ideas about healthcare and followed it by a rapid (sprint) prototyping and testing, which resulted in the development of the Ada’s app that is able to provide the patients with health information, upon which they can make better-informed decision about their health. The application is now used across 130 countries, having had done more than four million health assessments by 2019. What is also worth mentioning is that the precursor of this patient-centred application was a business-to-business application (Whitwell and Vadukut, 2019, p. 14). 

It seems that the ADA team was able to see the added value in transforming an internal tool into an external tool. Artificial intelligence and web-based applications are no panacea. What drives an organization to devise such tools is the idea of the co-creation. And this idea is stressed brought to us by innovators and designers who are deploying such methods as design thinking and sprinting in their work.

‘Employing a design approach brings with it a number of crucial benefits. These include a mechanism for placing the person – the “user” – at the heart of a solution; a means for experts to collaborate equally on complex issues; a rapid, iterative process that can adapt to changing circumstances; and a highly creative approach to problem-solving that leads to practical, everyday solutions’ (Burns et al., 2006, p. 9).

However, the benefits of the design thinking approach are not only related to co-creation. What makes design thinking a suitable approach to look for solutions in wicked problems, such as healthcare, is that it enables the organization to balance exploitation of the sold structures face-to-face 15-minute doctor visits) with exploration of new ways of dealing with an old problem (artificial intelligence). Design thinking is looking for 'outcomes that meet the desired objective,' and that is why organizations/businesses need to shift the weighing of their structures, processed and culture (Martin, 2019, pp 26-27). In the words of a famous fictional character Daenerys Targaryen, 'it is hard to see something that has never been before.'

However, the design thinking approach has been questioned, not only for its resemblance to an already existing approach called 'the rational experiment' but also for its deceit in giving the same weight in the decision-making process to the other (non-designer) participants:

'Design thinking privileges the designer above the people she serves, and in doing so, limits participation in the design process. In doing so, it limits the scope for truly innovative ideas, and makes it hard to solve challenges that are characterized by a high level of uncertainty – like climate change [or healthcare] – where doing things the way we always have done them is a sure recipe for disaster' (Iskander, 2018, https://hbr.org/2018/09/design-thinking-is-fundamentally-conservative-and-preserves-the-status-quo, p. 3).

'(…) Once a design is complete, the space that method opens for ambiguity and new alternatives is shut down' adds Iskander (Ibidem, pp 5-6). But there is an approach that embraces the imperfection of the design process – the Design Sprint:

‘Sometimes when people work together in groups, they start to worry about consensus and try to make decisions that everybody will approve – mostly out of good nature and desire for group cohesion, and perhaps in part because democracy feels good. Well, democracy is a fine system for governing nations, but it has no place in your sprint’ (Knapp et al., 2016, p. 139). 

It is now clear that the design process is a team effort. By having multidisciplinary teams, with people from a wider range of professional fields as possible that hold stake in any given wicked problem may be able to ensure that all stakeholders are accounted for and represented, with the designer acting as a facilitator.

‘The insights of the social sciences, biology, anthropology, politics, engineering, and technology, the behavioural sciences, and much else must be brought to bear on the design process. (...) the most important ability that a designer can bring to his work is the ability to recognize, isolate, define, and solve problems’ (Papanek, 1972, p. 160).

The same approach of mixing people from different departments of a company and driving them to a designers’ agency and introducing them to design as a meaningful and informed process was what saved Procter&Gamble, in 1998, from a continuous exploitation of its resources and it put the organization on the path of exploration, which led to an organizational redesign and chance of culture, creating new opportunities for revenue (Martin, 2009, p. 99).

Conclusion

Design thinking, as an approach facilitated by the designer but involving people from different backgrounds that are part of a complicated problem that is everchanging and hard to define, has already proved itself useful in creating a high number of services, mostly digital, in the field of healthcare. Most importantly, the several projects facilitated by designers have recognized the importance of the role of patients not only as proactive beneficiaries, but also stakeholders, and proved potency for co-creation of patient-centred solutions to such a difficult and constantly changing problem such as healthcare and well-being – an idea that is beginning to be supported by Governments (USA) and the International Development Community (WHO). However, the role of designer and the limits, if there are any, of the design thinking approach have yet to be fully understood and mitigated so that the designer, through its process, does not marginalize any populations and seeks constant opportunity for a more flexible process in terms of decision-making and delivering solutions.

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