It was great to see everyone again at the second week of the EIT/SIGCHI summer school! It was now already three weeks ago, and I thought I should write a short blog post. The week started at the visualization studio at The Royal Institute of Technology, KTH, Stockholm. We had all prepared a Pecha Kucha – a two minutes presentation about ourselves. It was great to hear about everyone’s research! The afternoon was focused on action research, with discussions about the pros and cons and presentations by Bengt Sandblad from Uppsala University, and the organizers of the second summer school week Jan Gulliksen from KTH and Åsa Cajander from Uppsala University (and the HTO group).
The second day all participants travelled to Uppsala, and the lectures took place in Gustavianum which is the oldest building of Uppsala University. The themes of the day were medical records online and a new surgical planning system implemented at the University Hospital in Uppsala. The lectures were held by Benny Eklund, IT strategist at Uppsala county council, Birgitta Wallgren who is a manager at Uppsala University Hospital, and Gunnar Enlund, chief physician at Uppsala University Hospital. My colleagues Christiane Grünloh, Åsa Cajander, and Jonas Moll also presented results from their studies regarding medical records online!
Wednesday we were back in Stockholm and had a workshop most of the day. We started with trying out different technologies such as VR glasses and tabletop computers. After lunch we had a teamwork exercise where we all developed a computer game together. My group’s task was to create the game sounds and we had a lot of fun doing so, even if we discovered some mistakes when our work was integrated with the rest of the game.
Thursday and Friday we had lectures and also groupwork! It was a great week with many interesting lectures. Read more details about the week in Jonas blog; Day 1, Day 2, Day 3, Day 4, Day 5!
Hello! As Jonas kindly nominated me, this is my first scientific blog post and hopefully not the last one. But first of all, let me introduce myself.
My name is Leysan and I am a second year PhD student at University of Trento, north of Italy. My research group works in the field of social informatics, an intersection of human-computer interaction, sociology, cognitive science, and psychology. My background is mainly in computer science but I also have a five-year degree in automation and control systems engineering from Kazan National Research Technological University, Kazan, a beautiful city in Russia where I am originally from.
My main research areas are human-computer interaction and calming interactive design in sensitive contexts such as professional and family caregiving for older adults. I am especially interested in the role of information and the way it could be communicated in order to reduce anxiety related to caregiving and conflicts between caregiving stakeholders like nurses and family members of the nursing home residents.
I am also a member of EIT Digital Doctoral school, whose goal is to provide computer science PhD students with the background in Innovation and Entrepreneurship and create an experience combining research, innovation, entrepreneurship, industry involvement and pan-European mobility. One of the requirements of EIT Digital program is six months of geographical mobility in Europe with the aim to encourage international collaboration and networking within European academia and industry.
EIT Digital is an educational part of the whole EIT initiative, which has several other directions or communities and one of them is EIT Health.
Just a week ago I returned to Trento from the e-health summer school organized by EIT Health, which took place in Dublin and Stockholm. Participation in it was such a great experience, not only from the perspective of invaluable knowledge it provided me with (thanks to the organizers!) but also became an opportunity to discover e-health community and meet research groups that work on similar problems. One of the amazing outcomes of the summer school for me was meeting Åsa Cajander and her research group. After several discussions on our research interests and current projects we work on, we realized that we have a lot in common and I could join them for a visiting period in Uppsala…
And already in the middle of November 2017 I am coming to Sweden to spend my first 3 months at Uppsala University, in the Health Technology and Organisations (HTO) research group. As you see from the photo, we have already had a kick-off meeting with Jonas, Åsa, and Christiane and I am really looking forward to join the team soon!
Like others from the HTO group, I also attended the first week of the eHealth summer school, which was sponsored by EIT Health and ACM SIGCHI, the special interest group of human-computer interaction (HCI). The first week of the summer school took place in Dublin and I think it was fantastic! It was so great to attend the interesting lectures and to meet all these brilliant people, with whom I share an interest in improving healthcare and health IT. The lectures gave us food for thought, which is reflected in the blog posts that have been written about them (see posts by Åsa Cajander, Diane Golay, Ida Löscher, Jonas Moll). Something that stuck with me were various attempts to support people to change.
Behaviour Change & Compliance
During the first days, behaviour change theory and behaviour change interventions were discussed on several occasions, e.g. how to change behaviour like smoking, exercising, medication adherence etc. In one of our group activities, we applied the COM-B, which is a framework for understanding behaviour and stands for capability, opportunity, and motivation. I was neither familiar with the behaviour change theory nor medical interventions that make use of this theory and found it interesting and thought-provoking. A quote that I heard somewhere before kept creeping in my head: “Everybody wants to change the world but nobody wants to change.”
In his presentation on Fiction in the Design Process, Conor Linehan (School of Applied Psychology at University College Cork, Ireland) showed us this wonderful video, which can be related to a behaviour change that is rather extrinsically than intrinsically motivated:
On Wednesday, ACM distinguished speaker Geraldine Fitzpatrick presented case studies in the context of real homes that exemplified the complexities designers face, e.g. that a neat prototype of a smart kitchen might look quite different than a real kitchen in a messy and complex world. She also talked about the importance to understand everyday routines, e.g. when it comes to medication management, people tend to put their medication in places where they have to take them (e.g. next to their bed; in the kitchen next to the coffee machine, …). She gave an excellent example of a person with Parkinson, who made a very conscious and informed decision not to take the prescribed medicine due to negative side effects that were so strong that he feared to lose his family. This patient probably would have been labelled “non-compliant”, however, his situation was more complex than that. In order to account for the complexity, Geraldine mentioned the concept of concordance as an alternative to compliance or adherence (see for example Chakrabarti (2014), The European Patient Forum (2015)). I can relate to this concept much more, especially considering blog posts like this by Carolyn Thomas, from whom I learned how strongly patients react to these concepts.
Social Practice Theory
In her second talk, Geraldine presented work by Blue et al (2016), who suggest the use of social theories of practices as an alternative to behaviour change theory to inform new ways of “conceptualizing and responding to some of the most pressing contemporary challenges in public health”. Geraldine gave an example where this was applied in relation to smoking cessation, which coincidentally was also the project topic that my group was working on through the week. Rather than looking at the characteristics of the individual smoker, in the use case Geraldine presented the focus was on the life course of smoking as a practice. It includes material and symbolic elements of which smoking comprises and how these may have changed over time, or to which other practices they are related (e.g. socializing, drinking, etc).
Something that struck me while working with my summer school team on our project was the premise: It is difficult to quit smoking. Having been a heavy smoker myself until I quit in 2005, this was something I also always believed myself. This changed when reading the book by Allen Carr which helped me to reframe the way I perceived smoking. As a smoker, I would have told you that I really liked smoking. Thus, every attempt to quit made me feel like I am missing out; everyone around me was “allowed” to smoke – only I wasn’t allowed (poor me!), because I (once again) had decided to try (!) to quit. When I saw others smoke, I envied them – and I felt very sorry for myself. This changed after reading the book. It made me realize that it’s not the case that I am not allowed to smoke, but I don’t have to smoke anymore. So instead of looking at smokers with envy, I empathized with them like “Look: they still have to smoke; I am free of this.” This reframing changed everything for me and indeed made quitting really easy. Instead of feeling sorry for myself, that I was missing out, I seriously felt liberated. The routines or practices I had as a smoker then changed. For instance, I used to enjoy smoking in my car (disgusting, I know! Well, I know now!), smoking when meeting friends, while drinking a glass of wine, etc. So in my previous attempts to quit smoking, I felt that something was missing, when I encountered these situations. However, after finishing the book, I experienced situations, which I realized to be much more enjoyable and stress-free as a non-smoker (e.g. going to the movies or visiting friends who don’t allow smoking at their home). Maybe I was more attentive to these positive new experiences. In addition, reading the book I did not only reframe „Smoking“ but also „Smoking Cessation“, because the author challenges conceptions that cessation is difficult and one would suffer from withdrawal symptoms.
During the week, our group worked on project related to an app that was supposed to help cardiac patients to quit smoking. However, our prospective user did not want to stop smoking in the first place – which can be related to above discussion “Who wants change and who wants to change?”. At one point, I raised the question whether this person maybe have tried several times before to quit, has failed, and thus perceives cessation as being difficult. So why bother trying, right? And – as chance would have it – the other day during my morning run I listened to one of my favorite podcasts and learned that there is an app a theory for that: Learned Helplessness. In this episode, David McRaney interviews Kym Bennett, who researches Learned Helplessness. Depending on ones individual attributional styles (or explanatory styles), a person looks at an experience (e.g. a failed math test) and explain this for example in terms of “the test was particularly difficult; I didn’t study enough” or “I am bad at maths and all tests will be as difficult”. The latter interpretation is related to a pessimistic attributional style, which involves people who explain causes of negatives events as stemming from internal (“I am bad as math”), stable (“I’ll always be bad at math”, “I’ll fail also the next test”) and global forces (“This is pervasive”; “It will effect other aspects of my life”). I won’t got into more detail (please listen to the episode and the follow up; they are really great!), but following the learned helplessness theory, if a person has a pessimistic attribution towards something, then s/he believes that there is not much s/he can do about it (i.e. s/he perceives herself/himself as being helpless or powerless). Thus it is quite understandable that this person is not very motivated to change.
Coming back to my example, I don’t perceive myself as having a negative attribute style in general. But in relation to smoking cessation, I for sure had a pessimistic attribution: I failed at quitting before; I’ll for sure fail again; it’s really hard to quit smoking; everybody struggles to do that; I cannot really do anything about it. What the book then probably did was, what was explained in the podcast episode as attribution retraining. Allen Carr called his (not uncontroversial) methodEasyway®, which already reframed what I thought about smoking cessation. Wait, what?? This is supposed to be easy?? The book helped me to reflect, to be more mindful and deliberate – as was also discussed in the episode to overcome learned helplessness. And I kept thinking: Maybe eHealth solutions should support this mindfulness and reflection to be helpful and effective in health interventions, where people struggle to change their behaviour, even though they want to?
Reflection on Behaviour Change
There was something about some of the behaviour change cases that bothered me, but I couldn’t really put my finger on it. I may have misinterpreted the cases, but at times I perceived the approach as rather paternalistic, which is something that goes against my personal values – and maybe even against the basic principles of human centred design or value sensitive design. I could much more relate to the social practice theory and the coaching / reflection model presented by Geraldine. However, today I got more food for thought when reading a blog post by Jelle van Dijk who responded to Diane’s reflection of the summer school. He wrote:
One thing that is not discussed however is that there are many humans on this planet. And most computers are in fact tools supporting humans quite well, only these humans are not what we call the “end-users”, who in turn may be very frustrated by that same system. In fact there are often multiple different “users” of computer systems and often it is no longer one person that is using the system but rather a whole organization or ‘society at large’.
and further he wrote:
So this is one complexity we may add to the question of how to design human-centered HCI: do we mean the individual user interacting with the system, or do we mean that complete computer systems should ‘fit’ to the needs of larger societal systems (which may sometimes lead to individual people complaining about having to fill out stupid forms online and so on) – or do we feel there’s a way in which we can make everybody happy.
Maybe this is the difference between the various approaches that I couldn’t see before. The approaches that I perceived rather paternalistic may serve rather the “society at large” (i.e. take your medication; stop smoking; exercise more; eat healthy… so that you don’t become a burden to the society) while the alternative approaches that use for example coaching and reflection help the individual to help themselves. In the end the goal of the individual might be in concordance with or contribute to the societal goals, but the underlying basics of the approaches are quite different. Why not aim for systems that help individuals to reflect on their behaviour, possibly help them change for the better (whatever that is…), and by that potentially contribute to the greater good? Or is it impossible to make everybody happy? 🙂