When I was in Copenhagen, I visited the Danish Design School there, which has bachelor’s and master’s programs in art, architecture, furniture design, product design, and so on. I was interested by a final project by two master’s students that focused on improving the user experience of chemotherapy treatment. Called “Chemo To Go, Please!,” it allows patients to administer their own chemotherapy at home rather than staying at the hospital (http://www.chemotogoplease.dk/).
They did research by visiting hospitals and speaking with nurses, doctors, and patients. They had multiple parts to the final product, including a digital platform for cancer patients to access health information, a design manual for treatment rooms, and a physical bag to hold the chemo-to-go gear.
I thought this was an elegant project with a beautiful set-up and display; the students clearly took their subject with great care. I’m hoping to interview them for the project.
Later in the day, I met with Henriette Langstrup, who works in the Department of Public Health at the University of Copenhagen. Her academic field of research is very related to my project – she studies the effect of health care technology on social relationships and patient-doctor interactions, as well as how these technologies fit into the greater health care system. She has a PhD and has written many articles on the topic, so I felt lucky to talk to her.
She helped me think about the difficulties with my project, and we discussed some academic theories that I should learn more about or focus more heavily on when explaining my project. Here are a few:
- Domestication theory: the process by which end users “tame” new technologies and innovations to incorporate them into already-complicated everyday life. How does the user change as a result? How does the technology industry subsequently change? (http://communicationtheory.org/domestication/).
- Usership: What does it mean to be a user?
- Participatory/cooperative design (codesign): A historically Scandinavian tradition of designing a product with input from the eventual end users, working on multiple iterations of the design until the user is satisfied.
- Welfare technology: Any technology that aids the welfare state to keep its population healthy (mostly relevant in Nordic, socialist countries). Henriette describes “welfare technology” as a term meaning two sides of the same coin. She says that “it can refer to technology that might provide welfare, as the welfare state provides it, but in a more effective and maybe a better way.” The term can also refer to “technologies that might help us keep our welfare system. By reducing costs for all the expensive things that the welfare state has to pay,” then resources are not depleted.
Henriette explained that in Denmark, participatory design is considered very important but not always so easy to do. She said that people in Denmark are very trusting of public institutions and have a high regard for research. In terms of codesign, “the whole participation atmosphere is quite widespread in many areas of health care. It’s a big wave that’s come over healthcare – that patients are seen as resources for making health care better, and innovation [is seen] as a communal project that you should engage in.” However, it can be difficult or unsuccessful for two main reasons. First, it’s hard to keep patients engaged with participatory design processes. While they might be easily mobilized to join a study, their reasons for joining can be quite varied, and not all potential users will have their wants and needs satisfied enough to stay with the study. Over time people lose interest in being involved. Second, design experts get so focused on cooperative design, thinking “Oh, we shouldn’t impose our knowledge on people. We need to hear what they want,” that they quell their own good instincts. Also, it’s impossible to please everyone at once. Henriette described how frustrating it can be to interview potential users about what they might want, only to realize that due to a multitude of constraints – economic, material, etc. – those changes cannot be implemented.
Henriette also made the great point that if you do mobilize lots of people to join a study, they still represent a narrow segment of your target population. She explained that you always end up with the “usual suspects,” people who are already interested in new ideas and improving their care. “Those that are on the edges – the poorly educated, the weak, those with poor social networks – it will be more difficult for them to get involved,” she said, “and then you won’t get to design stuff for them.”
My favorite part of our conversation was when we were discussing what she calls the infrastructure of care. Developing a technology to solve some health care issue cannot be the entire solution; of course, it’s a tool that people have to decide to work with, and they must be motivated to solve that health issue with or without the technology. But beyond that, it must build on and fit into an existing infrastructure of care. Henriette said that “often when we design technology, we think of the world that the technology is going to live in as a quite empty world. You talk about ‘filling the gap’ or how we are ‘linking those distant patients with these local doctors’ and the technology will be the link in that empty space. But it’s not an empty space. It’s full with crap and stuff and medication and distribution and categories, and all kinds of trash and good things and everyday life.” Henriette believes that recognizing this existing stuff, this infrastructure, when designing a new health technology is the deciding factor between success and failure. Luckily, she thinks that in the past decade or so, people have become better at doing so through anthropological and participatory approaches to design.
Finally, I’d like to note that this post is about health in Denmark, not Sweden, though they are similar; they both have socialist health care systems that are paid for by the taxpayers and the government. Yet Sweden has the higher life expectancy by a few years, twice the population, and spends slightly more on health care as a percentage of GDP (11.9% against Denmark’s 10.8%, according to the World Health Organization). While these are small differences, it is important to distinguish between the two, as my project is technically about Sweden only. However, it would be interesting to learn more about their differences and perhaps differing attitudes towards health technology.