Last July, I was approached by someone from the Philips team in London that works on the Future Health Index program. Previously they launched the first part of the 2018 Future Health Index, which is the indicator of the value delivered by 16 national health systems from around the world. For the second part, they wanted to produce some tangible guidelines on how things can improve and drive change within the industry.
In order to develop these guidelines, they interviewed 12 key opinion leaders (KOLs) across the Netherlands, US, UK, Australia, Germany, China, Sweden and Estonia – and I was one of them.
The Interview Questions
The interviewer was so kind to send me the transcript of my interview, otherwise I probably would not have remember them. I really enjoyed talking to him, which is not surprising given that people’s experiences with and attitude toward eHealth services is my PhD topic.
We started with my PhD research and I gave a background on the Swedish patient portal through which Swedish citizens can access their electronic health records online. We talked about the initial reaction from healthcare professionals and the conflict between the project and the local medical association (you can read about it in this article), how patients receive it, and what I think about this situation compared to, for example, Germany. Research within the DOME consortium indicates that the initial concerns of physicians might not have become reality and that many patients value direct access to their records, increased their understanding of their medical issues as well as their sense of control. In relation to that, I was asked whether the lesson would be to impose the intended change even if it is against heavy criticism of particular stakeholders. This really is a tricky question, especially in a context like healthcare in which a power-imbalance between clinician and patient still exists. I think, if real change is supposed to happen, sometimes consensus is impossible if the people who are supposed to change are against it. But at the end of the day, all stakeholders (like patients, family, physicians, therapists, nurses, management, insurance etc.) are (or should be) “in the same boat” so to speak and work together.
One of my favorite quotes on this is from Greenhalgh et al. (2012) who called for more effective inter-stakeholder dialogue in relation to telehealth and telecare:
The different interest groups described in this paper are likely to continue to exist in an uncomfortable truce with one another, competing for dominance as they gain more or less public appeal, professional credibility, political power, resource and so on.
and with reference to Checkland & Holwell (1998) they add:
While consensus is not a realistic or even desirable goal, surfacing such things as assumptions and values, and inviting debate on their significance through intersectoral and interdisciplinary dialogue will help achieve what systems thinkers have called ‘accom- modation’ (acknowledgement of, and adaptation towards, other perspectives and practices).
Future Health Index: Key Recommendations
I recommend to read the full report, which you can download here: Part 1, Part 2. According to the Future Health Index research, ‘universal’ electronic health records plays an important role in the future, for example regarding integration of and more effective use of data. They identified five key concrete recommendations to overcome challenges and drive integrated care:
Get regulation right.Clearly defined polices and robust data privacy and security standards at the national level build confidence in all parts of the healthcare continuum and help healthcare institutions develop their own data codes of practice, as well as encouraging healthcare professionals and the general population to collect, share and analyze data with greater confidence.
Modernize education.Healthcare professionals won’t demand EHRs and AI tools at work if they don’t learn to rely on them during medical training. Increasing healthcare professionals’ adoption of these tools must start with their integration into medical school curriculums.
End top-down implementation.Healthcare professionals are unlikely to adopt new tools when they’re presented as a ‘fait accompli’ by technologists. Creating EHRs and AI solutions in collaboration with both healthcare professionals and the general population will have a significant impact on successful integration.
Prove and explain value.Both healthcare professionals and patients need to be able to easily understand how data collection and analytics tools make a difference. Constantly measuring and communicating outcomes will create a body of evidence that will help bridge the understanding gap.
Harmonize data standards.Companies, healthcare professionals and governments in each market must work together to reach a greater degree of consensus on data formats and protocols.
Parts of this post originally appeared in a slightly different form on the my personal blog.
The questionnaire for the national patient survey was designed by several researchers in the DOME consortium and was informed by previous studies conducted. The process started in spring 2016 and was coordinated by Hanife Rexhepi from Skövde University. The final questionnaire addressed six areas:
General questions related to the PAEHR system
Questions targeting experiences from using the content of PAEHR
General questions about information needs, behaviour, and information-seeking styles
Personal health related questions
Data was collected through the patient portal from June to October 2016.
Analysis: Overview of National Patient Survey
The questionnaire addressed several important aspects related to patients reading their electronic health records. To give an overview, we focused in this article on the following questions:
Why do patients in Sweden use Journalen? And how often do they use it?
What types of information are most valued by patients?
What are the general attitudes by patients towards Journalen?
What differences can be identified with regards to attitudes between different county councils in Sweden?
The analysis and writing process was led by Jonas Moll.
The survey was initiated by 2,587 patients on the national level. The majority of respondents responded to use Journalen about once a month and the most selected reasons for using it were: 1) to receive an overview of one’s own medical history and treatment, 2) to follow up on doctor’s visits, and 3) to become more involved in one’s own care.
The top three reasons why patients believe that Journalen is important are that it 1) makes them feel more informed, 2) improves their communication with care, and 3) results in a better understanding of one’s own health status. The most important resource, according to the survey, is test results. In general, the respondents had a very positive attitudes towards Journalen as a reform and considered access to their medical records as good for them. The attitudes did not differ greatly between respondents from different county councils.
The paper has been accepted for publication by the Journal of Medical Internet Research, is currently in press, and can be read as pre-print here.
The international Uppsala Health Summit is an annual meeting for dialogue on challenges for health and healthcare. The summit is a collaborative effort between eleven Swedish public and not-for-profit partners, led by Uppsala University. Each year, the summit focuses on one challenge for health and healthcare and the question on how to overcome obstacles from implementing knowledge from research and innovations. Around 200 personally invited experts from all over the world and from different sectors come together to engage in dialogues in plenum sessions and in solution-oriented workshops. Last year, delegates came from 39 different countries.
Summit 2018: Care for Cancer
This year’s summit takes place form 14-15 June 2018 is themed Care for Cancer. Patients today have more opportunities than ever to survive and even to recover from cancer. However, the world is facing growing incidence and prevalence of cancer and preventive actions (e.g., adopting a healthy life-style) can only solve some parts of the problem. The provision of financial resources as well as equal access to treatments is challenging for healthcare systems around the world, despite growing treatment opportunities.
Uppsala Health Summit 2018 focuses on how we can open up these opportunities for a growing number of patients, by making better use of data and technologies and on how such use can pave way for a more equitable access to the best possible treatment and diagnostics within any given context.
The programme is available here and addresses a broad range of topics in workshops and plenum sessions. Some of these are: precision medicine in cancer care, patients as a driving force to develop care, long term care for cancer survivors, access to treatments and diagnosis, implementing physical exercise in cancer care, and many more.
Our Workshop: Using Data for Better Cancer Treatments
A critical incident is an event that has happened to a person and that this person regards as important or significant in some way. Such an incident can be very useful to learn from, and thus it can be an event that is perceived as positive or as negative. Critical incidents have been used a lot for critical reflection in areas such as aviation (e.g., to analyse failures or human errors), health, education and social work.
As the aim of our workshop is to develop Visions of the Future, we are very happy that Prof. Bengt Sandblad will give a keynote on Future Workshops, which is a well established method that has been used in various domains (e.g., healthcare, traffic control, administrative work). Making use of the instructions for a future workshop, we will then develop visions of the future from different perspectives: researcher, physician, nurse, or patient.
Together with more than 60 delegates who signed up for our workshop, we will sketch A Day In a Life in 2050. As workshops at the Uppsala Health Summit are solution-oriented, we are including answers to questions such as:
Who must be involved?
Who can take the first step?
How will this contribute to more efficient cancer care?
How will this contribute to more equal cancer care?
Improve to the individual patient’s quality of life
How can this influence which health decisions the patient and her kin can make?
We are really looking forward to the Health Summit and will also attend other workshops and plenary sessions. You can read the pre-conference report where all workshops are outlined here.
Qualitative Interviewing: Individual Interviews – Focus Groups and Beyond (DG & CG)
Keys to Publication: Writing Qualitative Research (DG & CG)
The participants were quite active on Twitter during the week, using the hashtag #KUQRSS (Kingston University Qualitative Research Summer School).
Celia Kitzinger gave an inspiring keynote on “Making a difference with qualitative research”. Her current focus is on “exploring the cultural, ethical, legal and social dimensions of coma, the vegetative state and the minimally conscious state”, which you can learn more about on their website.
Reflecting on research and the “impact” we want it to have, one might wonder: How do you make a difference when you only have a small sample? Celia shared an example from her research, which was really powerful. They had interviewed relatives from patients in a vegative / minimally conscious state. Afterwards they gave them postcards, on which the interviewees could share something that they wanted the doctors and lawmakers to know. These postcards were then later made into an exhibition that doctors and lawmakers attended. Pictures from, for example, one doctor reading the postcards in that exhibition were then shown to the relatives. For these relatives, it made a big difference that the doctors had read their postcards. This showed us that with relatively low-key and simple tools, it is possible to make an impact – make people’s voices heard and establish a communication between groups of people that otherwise do not come into contact with each other (like for example in that case, lawmakers and patients’ relatives). Inspiring!
Celia had scheduled some tweets that were published on Twitter during her keynote, for instance this one:
Dariusz Galasiński gave a keynote on “Qualitative discourse analysis and psychology: Extending the possibilities”. As a linguist he shared interesting experiences, for instance, from an study on questionnaires. They used the “Think aloud” method while participants completed a questionnaire, because they were interested in how people interact / cope with questionnaires, their construction of their choice, and what did people say about the choice they were making. This was really interesting, as some of the questionnaires put a number to an emotion. He gave “despair” as an example and that you cannot have “little” despair, because being despaired is always “big”. A participant said, that he felt not despaired, but a little bit weak, so “let’s put a little 2”.
He also presented some very interesting findings from his research on men’s suicide notes, which led him (with some help from his daughter) to define the concept of “long suicide”. (He made this research into a book, which was recently published.)
The workshops proved to be extremely helpful and relevant for our research. They provided theoretical background which we could then apply in hands-on exercises. We got many practical advice during the week, which are also relevant for experienced researchers. For example, in the workshop on IPA (Interpreative Phenomenological Analysis), it was recommended to conduct the first 2-3 interviews, transcribe them and then have a supervision and discussion with someone. The supervision focuses then on questions like: Do they really talk about things that you want them to talk about? It was also said that sometimes you notice small things; for example that you ask a lot of closed questions. The lecturer was then asked, if this supervision is also needed if the researchers is very experienced. Yes indeed, as it is unlikely that they have worked with these population group or asked these interview questions before.
The hands-on workshop on interviewing, already mentioned in a previous post, was definitely a highlight. It covered all the most significant aspects of designing an interview schedule and actually conducting an interview. At some point during this second phase, Diane was given the opportunity to put herself in the shoes of the interviewer for a while, and received valuable feedback on how to improve her interviewing skills. A very instructive experience!
Every day, we had the opportunity to attend a consultation clinic – an hour of discussion in a small group with an experienced qualitative research, during which we could ask questions related to our own projects. This was an excellent opportunity for us to get expert advice on our current and even future research endeavours. Getting a fresh perspective on our projects, from people who did not belong to the same field as we did, was extremely interesting. It led to very constructive and creative discussions – so much so that the time always seemed too short, even after a whole day of active mental work!
We found the consultation clinics so helpful that we made use of them even on days where we did not have a particular question ourselves, because it was very valuable for us to get the opportunity to learn from the projects of others and the recommendations they received.
Visit at Hampton Court
On the last day, we visited Hampton Court Palace, which you can see on the picture accompanying this post. We were a surprisingly small group visiting, but we very much enjoyed both the visit and the company!
We wholeheartly thank the organisers – especially Prof. Adrian Coyle – for this fantastic week and highly recommend this summer school to everyone interested in qualitative research!
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.
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? 🙂
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.