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? 🙂
The EIT Health/SIGCHI eHealth summer school was last week in Dublin. A summer school is a great opportunity for PhD students and other researchers to learn more about a subject and to get connected to other people with a similar interest. This summer school was about HCI and eHealth, and therefore a whole bunch from us participated, more exactly Christiane, Diane, Jonas, Åsa and me! (or Åsa is one of the organizers). The summer school will continue with one more week in the end of August, and that time in Stockholm and Uppsala!
The Dublin week of the summer school was very well organized by Gavin Doherty from Trinity College Dublin. The participants were a good mix between innovators and eHealth researchers from different related disciplines such as HCI, Technology, Health Sciences and Psychology, and also patients participated! We got to hear many good talks during the week, and had hands on exercises and group work. The talks covered for example patient and public involvement, user centered design, how to use fiction in the design process, designing for behavior change, inclusive design, internet interventions, ethics in eHealth, and some very interesting case studies! Geraldine Fitzpatrick from TU Wien gave a lecture called “Putting eHealth in context” and mentioned that instead of designing “smart” systems, we should focus on systems that enable people to make their own decisions.
You can read more about the summer school in Jonas’ blog (day 1, 2, 3, 4, 5), in Åsa’s blog, and in Diane’s blog (here, and here)! The week in Dublin was great and now I am really looking forward to the second week of the summer school in Stockholm and Uppsala!
Doing research in DOME and DISA is very exciting for me; especially seeing the Patient Accessible Electronic Health Records (PAEHR) in practice. Every time one of my colleagues logs into the portal and shows a feature in the Swedish Portal Journalen I think: “I want this, too!” I have a background in Media Informatics and worked as a medical assistant, where I myself wrote many medical notes into the EHR. Thus, I do not consider it to be rocket science to graphically visualize lab results or show an overview of patient’s visits to the doctor. However, as I am living in Germany, it feels a bit like coming from the Stone Age seeing Journalen in action, because we are currently so far behind in relation to eHealth. For instance, our prescriptions are still on paper; as are referrals and sick notes.
End of 2003 it was determined by the German government to modernize statutory health insurance, including the implementation of an electronic health insurance card. This caused lots of critique and opposition, not only from physicians but also from citizens. The development and rollout is ongoing for more than ten years now; and the cost are already amount to 1.7 billion Euro. In the future, the card may contain some medical information in case of an emergency (like allergies, allergies, implants, chronic diseases or medication). However, claims that putting medical information on a physical card would lead to “Better quality of medical care thanks to better information on medical data” are in my opinion questionable and the very idea of the need for a physical card not very future-oriented! I really want to have access to my (whole!) EHR, but at the same time I do not want to carry it around with me in my wallet. Besides: very recent information such as lab results would not be on the card anyway. Today, the card carries the same basic information about the insured person as before (name, date of birth, address, personal health insurance number and insurance status) and additionally a photograph. Until now, the promised additional services have not been implemented. Physicians cannot even update your address yet in case you moved house, which has been one of the selling points. So in sum: Germany is way behind and it seems to me that we put millions of Euros into a technology that is probably already outdated when it’s finally implemented.
But there may be a light at the end of the tunnel:
I recently watched a talk in the re:health track of the re:publica 2017, which is a European conference about digital culture in the world. The talk was called “Play it safe – the electronic health record and data security” (my translation; available on Youtube in German, but with English subtitles). The title made me curious and I was surprised to learn that a statutory health insurance company (Techniker Krankenkasse) aims to develop and implement a PAEHR in collaboration with IBM. Immediately concerns popped into my head: what about privacy and data protection? For sure, the insurance company would like to collect more data about their insured people and consequently will change the premiums accordingly (which is already happening with car insurance). This would however go against the very idea of the „Solidargemeinschaft“ (collective body of the insured) which is the case in Germany, i.e. people insured with a statutory health insurance all pay the same premium, regardless of having a pre-existing condition, engaging in high-risk sports, or whether they don’t exercise at all. Private insurers already calculate premiums based on certain risk factors. Therefore, I was surprised and relieved to hear from the CEO of the insurance company, Jens Baas, that behaviour-based insurance is neither the motivation nor is planned in the future. Furthermore, he mentioned that he is currently in discussion with the Federal Minister of Health, Hermann Gröhe, that this should be expressly stipulated in the law to prevent this also for the future.
The main points I took from the talk:
In collaboration with IBM, the insurance company wants to take a lead to prevent foreign companies to take over, as it is clear that citizens want to have access to their EHR. In addition: people already collect many data that are currently stored overseas on servers from Apple, Garmin, etc. According to Jens Baas, they would like to provide a “safe heaven” for these types of data as well.
The insured person owns her data, not the insurance company! Thus, people themselves decide, who will have access. As the CEO points out, not even the insurance company will have access. Neither would anonymized data be given to other interest group (such as research), as they often can be de-anonymized.
Being a statutory health insurance, the Techniker Krankenkasse does not aim to provide different insurance options. In his talk Jens Baas emphasized that people should have the “right to irrationality” (Recht auf Unvernunft), i.e. you do not have to pay higher premiums when you do not live up to certain rules (e.g. fail to walk 10.000 steps a day, smoke or engage in sport activities that may cause injuries).
Data will be stored centrally and secure – the insurance card will not be necessary for this. Maybe as an access point, but the EHR will not be stored on the card. The central data storage is of concern for many, as it could offer a central entry point for hacker. As Jens Baas pointed out: there is no such thing a 100 % data protection. This is by the way also the case with paper-based records, as was seen recently in Melbourne. However, to address the security aspect, they aimed to work together with a competent partner to make it as secure as possible, while at the same time make sure that the data is still usable. Data is to be stored in Germany and thus German data privacy acts are to be applied.
Although this development starts as an initiation from Techniker Krankenkasse, the idea is to make this also available for other insurance companies. This means, that we hopefully won’t have a separate patient portal for each insurance company.
Who gains? If the insurance company will not have access to the data, why do they invest in this? According to the CEO, they want to be able to offer additional and individualized services that attract more customers.
I think, this is very exciting! Whenever we are talking about patient portals in DOME or DISA, I was rather pessimistic that Germany will have anything close to that within the next 10-15 years. The concerns especially with regard to a central data storage is valid, but that should not prevent the development of web-based access for patients to their data in general. As Baas pointed out, we have to balance risks and opportunities; saying you don’t want to take any risks means in the end the opportunities are next to zero.
On the recent German congress of physicians, Sascha Lobo (Blogger and so-called internet expert) called on the physicians, to actively co-create the process of digitalization. Hopefully, the project by TechnikerKrankenkasse and IBM is more successful to present healthcare professionals the benefits PAEHR can have – not only for the patients but also for healthcare professionals – as experiences in other countries (e.g. OpenNotes in US, Journalen in Sweden) have shown.
Several guests, that are involved in joint eHealth projects with Åsa Cajander and me, have been visiting us this week. The blog picture was taken yesterday and shows, from left to right, me, Christiane Grünloh (KTH, TH Köln), Gunilla Myreteg (Örebro University) and Maria Hägglund (Karolinska institutet).
Christiane Grünloh, who is a Ph.D. student from the Royal Institute of Technology (KTH) and living in Germany, will be with us this entire week to work with us on a large observation/interview/survey study which will be conducted with physicians and nurses at Uppsala University hospital. She is also a member of the HTO group, but is mostly connecting from Germany via Skype. We have been working mostly on refining the interview template, since we have not yet conducted any interviews. Yesterday, Gunilla Myreteg from Örebro University and Maria Hägglund from Karolinska Institutet also joined in to, among other things, help us finalize and pilot the interview template. It was a very productive day – it’s nice to sit down with colleagues you don’t meet that often to really focus on a common task. Those who want to know more about our study at the oncology department, which is a part of the DISA project as well as the larger DOME consortium, can read this blog post for an introduction of the entire research team behind the study and this blog post for an introduction of the different parts of the study.
While all of us were gathered, we also took the chance to work on the first paper based on a large national patient survey, which we and several other researchers within the DOME consortium are also a part of. And of course we couldn’t just split up after being done working – we had to end the day at a nice Italian restaurant here in Uppsala! 🙂