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Get well, do well: including disadvantaged groups into digital healthcare innovation

Written by Jill van der Kamp

Images created by /found on wikiwand.com: Statue of Marjolein Kriek by Bas van Vlijmen.

Published on May, 15 2023

Get well, do well: including disadvantaged groups into digital healthcare innovation

Innovations are often seen as objective solutions for our societal problems, with big promises such as a better quality of life and overall well-being. Yet, especially in healthcare where digital technologies have recently taken over a lot of practices, questions were raised such as ‘how do these technologies impact people’s lived experiences?’, ‘can these technologies exclude certain groups from receiving the same healthcare as others?’ and ‘can we develop technologies which are better aligned with the needs and values of the users?’. To illustrate the relevancy of these questions, I will discuss the impact of society on the development of a medical-technical innovation and vice versa

An embodied statue without the body?

In the green gardens of the Faculty of Science in Nijmegen, you can find a statue of a woman named Marjolein Kriek. However, contrary to what you might expect when someone is portrayed in a statue, you will not find a bust or full-length image of her, since she is portrayed through a stack of computer prints that contain her DNA sequence. This statue symbolizes the historical moment of Kriek being the first woman who had her DNA sequenced. Yet, it also symbolizes the possible way of viewing people as digitalized data merely generated from their genomic building blocks: C-G and T-A nucleotypic codes. Of course, you can question if that is a realistic fear but recently healthcare practices have already changed drastically through the introduction of digital technologies and not always for the better.

New healthcare practices through digital technologies

Barbara Prainsack describes that the changes in healthcare through digital technologies occurred due to 1) digitalization: where analogue practices are replaced by digital options, such as electronic records which store information about your health or disease; 2) automation: where human practices are replaced by machines, such as decision support systems which can decide on your treatment instead of your doctor; and 3) datafication where more and more information about your body can be stored, including details that are very private such as your DNA sequence.

These digital changes are all made because they are believed to make healthcare better in quality and efficiency. Yet, many scholars, such as Barbara Prainsack, Marianne Boenink and Lotte Krabbenborg, show that medical technologies are not value-neutral. These technologies are shaped by society but also shape our society and how we perceive the world. You might be wondering what is meant by that, so to further illustrate the mutual shaping of technology and society, I will discuss the example of a digital home-based screening technology in this blog post.

Society shapes technology

The digital screening technology I mentioned above, is being developed right now to prevent heart diseases, kidney diseases and type 2 diabetes. These diseases were often known as ‘diseases of affluence’ since an increased income in developed countries was associated to new behaviours such as indulging in food and smoking. Yet, strikingly, it is now known that groups who are socioeconomically disadvantaged are more often affected by these diseases.

Previous research shows that these groups, for instance people living in poverty or with an immigration background, deal with financial, language or religious barriers. These barriers keep them, for example, from taking days off from work to visit their general practitioner or from participating in medical screening. Therefore, people often find out that they are ill when the disease is already in an advanced stage. This can be a large burden on people because they have to manage their newly diagnosed illness which can include dealing with pain, doctor appointments, monitoring of disease and treatment trajectories.

Some people argue that diagnosing patients when the disease is already severe is also a burden to healthcare and society due to treatment costs. Thus, a technology was designed to tackle these problems: tests that you can perform yourself in the comfort of your own home, through an app which you install on your smartphone, which can indicate early signs of heart disease, kidney disease or type 2 diabetes. This technology is shaped by society because it is promised to reduce illness, healthcare costs and workload which are valued in our society as undesirable. Yet, when developing an innovation that solves societal issues, it is important to not create new issues while doing so. Therefore, it is important to look beyond the promises and reflect on how this technology could shape our society.

Technology shapes society

In the case of the digital home-based screening technology, I want to talk about two issues that it could develop after implementation. First, the potential exclusion of socioeconomic disadvantaged groups. Due to the organisation of the tests, through an app on a smartphone, people who do not own smartphones or have limited health literacy are excluded from participating in the screening. This is problematic because it can create a division in who can receive care and who cannot. Moreover, our societal values of democracy and equality, notably equal care opportunities, are undermined when making the decision on who participates in the screening through the design of the technology.

Second, it can further the idea that health is one’s individual responsibility and it is someone’s own fault when they fall ill with these ‘diseases of affluence’. This is problematic because it reduces support from one’s social environment, especially if we forget that healthy behaviour, such as eating healthy and exercising, is not only an individual responsibility but also determined through social and political structures.

These potential social effects do not mean that technologies should be rejected when the new realities they can create are undesirable, but it gives opportunity to adjust innovation in constructive ways to better align with societal values. One way to find the societal values on which a technical development can be adjusted or improved, is through public participation since the public often has relevant insights into the effects technologies will have on society in the future. I argue for a public that consists of people from all walks of life, to create well-informed innovations that align with the needs and values from all of us.

References
Boenink, M. & Kudina, O. (2020) ‘Values in responsible research and innovation: from entities to practices’, Journal of Responsible Innovation, 7(3), 450-470.

Prainsack, B. (2020) ‘The value of healthcare data: to nudge, or not?’, Policy Studies, 41(5), 547-562.

Krabbenborg, L. & Mulder, H. A. (2015) ‘Upstream public engagement in nanotechnology: constraints and opportunities’, Science Communication, 37(4), 452-484.

Swierstra, T., Stemerding, D. & Boenink, M. (2009) ‘Exploring techno-moral change: the case of the obesitypill’, in Evaluating new technologies, 119-138, Springer, Dordrecht.

About the author: Jill van der Kamp, Institute for Science in Society, Radboud University Nijmegen.

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