To get paid sick leave in Sweden, one must obtain a medical certificate from a physician and get it approved by the Social Insurance Office (Försäkringskassan). A recent report showcase that 9,7 % of all medical certificate forms are sent back to the issuing physician by Försäkringskassan (2017), needing completion or re-phrasing of the filled in data. The biggest culprit in the form is the field where one should describe how the patient’s condition hinders them from working.
In collaboration with EPJ, Region Uppsala and the company Inera, I will in my master thesis evaluate if a digital version of the form can help mitigate the frequent rejection of forms (due to phrasing). With a number of different prototypes, we will try to uncover if contextual instruction to each form field can help physicians fill in the form in a way that better corresponds with Försäkringskassans expectations.
The project has a great potential not only to ease the burden of an already strained health care system (and their patients), but also in regards of understanding physicians’ needs when it comes to IT. In the best of worlds, the results can help us design better health care systems and ensure a sound health care. It is truly exciting to work on projects that has the potential to impact many patients’ life quality, where an early approved medical certificate can mean the world to many.
Anton Björsell, Uppsala University. The study is my master thesis project within HCI and is planned to be executed throughout February to May this year. Except my focus on HCI, I also hold a bachelor’s degree in Media and Communication Studies. My favourite kind of research is the one which makes an honest attempt to understand humans and their needs. I am very excited about the project and grateful for having the opportunity to work with a topic that concerns so many people.
Back in December I was invited to give a seminar in Swedish at the EPJ department of Region Uppsala, the department in charge of many of the health-related IT systems used at the hospitals and primary care facilities in the region. My seminar was on the the current state of research in relation to how to implement IT in healthcare. Out of all the perspectives one can use to approach this area of challenges for healthcare, I devoted most of the seminar to presenting barriers and enablers to change management projects as well as IT development projects, and discussing these with the participants. The seminar was recorded and is now available on YouTube, if you find the topic interesting (and are comfortable with the Swedish language).
The HTO group, and more generally the HCI group at the Department of Information Technology, Uppsala University, have an ongoing collaboration with the EPJ department at the region, and there will be more seminars on a variety of topics given by us during the spring.
Sofie Wass successfully defended her PhD thesis last week at Jönköping University, and I was the opponent at the defense. The thesis is about eHealth Innovations and consist on work related to two eHealth innovations: medical records online for patients & the service “My referrals”. Two papers are on medical records online for patients in her thesis.
Sofie Wass included five publications in her thesis and she has used an unusual variety of methods in her papers. You find 1) one literature study on open innovation and eHealth, 2) one interview study with experts and decision makers in health care, 3) one study on using business models for eHealth including interviews, a workshop and observations, and finally also 4) one study using interviews and 5) a survey to health care professionals and one to patients.
The thesis is well worth reading for those who are in the eHealth and innovations area. The introduction text includes an overview of eHealth in Sweden with some of the major milestones described around the progress of eHealth. Here one can read that the official work with strategic work in eHealth started as late as 2002, and that the coordination of eHealth in Sweden has been coordinated by different organizations throughout the years.
There are also some interesting facts found in the thesis such as, here presented randomly:
70% of all eHealth projects fail to achieve their goals 🙁
There are few studies on eHealth and Open innovation: Only 18 papers were found in her literature study.
Test results is the feature in medical records online that is highest ranked as an additional feature to rank in Jönköping county
Professionals working in outpatient clinics were less positive towards medical records online for patients than those in primary care.
As I wrote in the previous post, I recently had the opportunity to attend and present at INTERACT which took place in Mumbai, India. In this post, I write about two posters & demos. The Poster and demos sessions took place in every coffee / tea break during the whole conference, giving the attendees plenty of opportunitities to visit the individiual demo booths.
Supraja Sankaran (Hasselt University, Belgium) demonstrated a tool to personalize e-coaching based on individual patient risk factors, adherence rates and personal preferences of patients using a tele-rehabilitation solution. In their abstract, she and her co-authors Mieke Haesen, Paul Dendale, Kris Luyten and Karin Coninx describe, that they
developed the tool after conducting a workshop and multiple brainstorms with various caregivers involved in coaching cardiac patients to connect their perspectives with patient needs. It was integrated into a comprehensive tele-rehabilitation application.
Supraja was one of the participants in our EIT Health / ACM SIGCHI eHealth summer school (see here, or here), so it was really nice meeting her again at the conference. Supraja was born in India, and she went out of her way helping us Non-Indians, for instance explaining the food or local practices to me. It was really fun!
Mind the Gap
Another extremely interesting demo was the game “Mind the Gap – A Playful Take on Gender Imbalance in ICT” by Max Willis and Antonella De Angeli (University of Trento). I had met Antonella already on Monday during the field trip and she introduced me to Max (her PhD student) during lunch. Thus, we already talked briefly about the game and I couldn’t wait to play it. They outlined the aim on their poster:
Mind the Gap is a provocative, playful intervention and a research tool that illuminates players’ attitudes and experiences concerning gender privilege and discrimination in ICT. It initiates a structured social interaction around gender issues driven by role-play and participant authored texts.
The gameboard charts a typical technology carreer path. Female Player Characters (PC’s) roll a 4-sided die, male PC’s roll a 6-sided die. Players advance and draw a ‘privilege’ card describing a scenario which is scored to reflect a penalty or an advanage according to the gender of the PC.
During the game, players an author their own privilege cards, add decisions, or create new rules and add them to the game.
Playing this game was really fascinating, but also reading the cards authored by previous players. It didn’t take long for me to pick the card which you see in the picture below: “Congrats! You will have a baby!” As my character was female like me (the character is drawn at the beginning of the game), I had to leave the career path and go on the family path.
Later I drew the card “Change gender to female, if you are men”. Too bad – I might have wanted my character to change to male in that case 🙂 The game drew a lot of attention and it was really interesting. I am really looking forward to reading more about their findings in the future. For more information, visit their project website.
At the end of the conference, the organisers showed us the following clip they put together, which I think is really nice:
This year’s INTERACT conference took place in Mumbai, India. It started off with field trips and workshops on Monday and Tuesday. The main conference was held from 27-29. September. The conference was extremely well organised and I am very glad that I could attend, listen to interesting talks, present our own paper, and meet so many kind and open people who do extremely interesting research.
What is INTERACT?
INTERACT is a biennial conference and is organised by the Technical Committee on Human–Computer Interaction (IFIP TC13) of the International Federation for Information Processing (IFIP). IFIP is a non-governmental umbrella organisation of national societies working in the field of Information technology. IFIP is organised through technical commitees; TC13 is the committee on Human-Computer Interaction and consists of serveral working groups. This year’s INTERACT conference was the 16th conference; the previous one took place 2015 in Bamberg (Germany). INTERACT in Bamberg was my first international conference, where I presented a paper on the use of online reviews in the design process and how they can help designers to take the perspective of the people they are designing for.
This year was the first time, that researchers could propose field trips. As the deadline for registrating one’s interest was before I was notified that our short paper was accepted, I thought that participation was not possible any more. However, Arne Berger, the organiser of one field trip saw on Twitter, that I was attending the conference and asked whether I was interested in joining one day, as there was still a free spot. Excellent opportunity indeed! The field trip Understanding The Informal Support Networks Of Older Adults in India aimed to get a nuanced view on older adults’ practices of receiving from and providing support to peers, family, friends, and neighbors. It was a two-day fieldtrip, however, I only attended on Monday. Here we were split into two groups and I was forming a group together with Dhaval Vyas (Queensland University of Technology) and Antonella De Angeli (University of Trento). We conducted two interviews during the day. The couple we interviewed first felt more comfortable speaking in Hindi, so Dhaval interviewed them, and every now and then translated his question and/or their answers in English. That was a really interesting experience and Dhaval did a great job also including us, when he translated every now and then, what was said. Of course, this was not always possible, as this would have disturbed the flow of the conversation. Something I noticed was that the idea of “older people receiving support” was challenged: This couple was not receiving support from their family in that sense. Instead, they were providing tremendous support for their children, because they took care of the grandkids.
The second interview took place in the afternoon, where we met a 85 year old woman, who had worked as a teacher until she was 80 years old. She felt comfortable speaking English, so all of us could ask her questions. I found her to be very inspiring and positive; it was a great pleasure talking to her and learning how she goes about her day. For example, she likes playing chess on the iPad and, according to her son, her memory improved since she does this. Every evening, she meets a couple of her female friends outside the house, where they all sit on the bench, enjoy each other’s company, and watch the grandkids play. We were invited to join her when she was meeting her friends right after the interview, which was really nice, too.
Presenting our Paper on “Critical Incidents as Workshop Format”
I also was able to present our short paper on “Using Critical Incidents in Workshops to Inform eHealth Design”. This paper is based on the workshop we organised at NordiCHI 2016 and was written together with some of the organisers and participants. Practitioners, researchers and patients were invited to contribute with a critical incident related to eHealth services for patients and relatives. We accepted five critical incidents, of which three focussed on the patient perspective and two on the developer’s perspective. You can find the critical incidents submitted and analysed in the workshop here.
In the paper, we reflect on Critical Incidents as a format, which we made use of in our workshop. In sum, the participants and we as organisers found it very helpful to reflect together in a group on eHealth projects. Even though the format was quite unusual and some participants reported, that they struggled to follow our instructions related to the critical incidents, it also helped to re-examine and re-frame their particular project. I really enjoyed presenting this at INTERACT on behalf of my co-authors. I have to admit, that the time constraint of 8 minutes was quite tough. But our session chair Jacki O’Neill did a wonderful job creating a positive atmosphere while keeping the time.
In part 2, I will write about the poster & demo session.
Uppsala Health Summit is “a recurring international policy arena for dialogue on challenges for health and healthcare, and how we can overcome them”. In 2018 the theme for the summit is cancer, and the HTO group has been asked to organize a workshop in the area of using existing data for diagnosis and treatment of cancer. We see this as a great opportunity to address this important issue and take it one step further towards a solution.
People who are personally invited are welcome to join this health summit. The project manager on the summit, Madelein Neil, personally invites decision makers, opinion formers and experts.
The HTO group are currently working on setting up the ideas for our workshop. We have had a few discussions and so far, we are thinking of re-using the concept of critical incidents that Christiane Grünloh presented at the INTERACT conference this year. The abstract of this paper is:
Demands for technological solutions to address the variety of problems in healthcare have increased. The design of eHealth is challenging due to e.g. the complexity of the domain and the multitude of stakeholders involved. We describe a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. We propose the workshop format, which was used during a conference and found very helpful by the participants to identify possible implications for eHealth design, that can be applied in future projects. This new format shows promise to evaluate eHealth designs, to learn from patients’ real stories and case studies through retrospective meta-analyses, and to inform design through joint reflection of understandings about users’ needs and issues for designers.
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? 🙂