DOME – Health, Technology & Organisation (HTO)

Two studies published on the effects of patient accessible electronic health records

Members of the HTO group recently got two journal articles published, on the effects of patients accessible electronic health records (PAEHRs) in Sweden. Both studies were picked up by Swedish media after press releases had been published by Uppsala University.

The first article, “On threats and violence for staff and patient accessible electronic health records” was published September 28 and written by Ulrika Åkerstedt, Åsa Cajander, me and Ture Ålander. The open access article, which you can find here, is based on Ulrika’s masters thesis and presents results from a survey study conducted with healthcare professionals at the emergency and psychiatric departments at Uppsala University Hospital. Among other things, the study showed that the fear of being exposed to threats and violence from patients increased as a consequence of PAEHRs being launched in Region Uppsala. Shortly after the article was published this press release was published by Uppsala University. The news spread from there and Forskning.se, Dagens medicin, SVT Nyheter and Vetenskapsradion all published their own articles based on the press release. Åsa and I were also invited to write a popular science summary on Ciennce.se. The article by Dagens Medicin and the article by SVT Nyheter also took things further by e.g. adding interviews Åsa Cajander and representatives from the psychiatry department in Region Uppsala!

Our second article with a PAEHR theme, “Patients’ Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden” was published November 1 and written by me, Åsa Cajander and Christiane Grünloh from the HTO-group as well as several other researchers in the DOME consortium (I introduced all researchers that are involved in the study in this blog post). In this article we focus on patients’ attitudes toward and experiences with PAEHRs in Sweden. It is clear from the results that patients really appreciate the possibilities that the Swedish PAEHR system, Journalen, gives them and that patients want access to new results in their PAEHR within a day after a new examination or visit. You can find many more results, and of course more details about the study, in the open access article published here (please help us share the news!). Even this article was presented in a press release from Uppsala University and the news was once again picked up by Forskning.se and we once again got an invitation to write a popular science version on Ciennce.se. This time around Inera (managing Journalen and several other Swedish eHealth systems), published their own press release about the study. The journal IT-Hälsa also wrote an article based on Inera’s release.

Philips Future Health Index 2018 released

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.

Kick-off for a series of posts on teaching and learning

In addition to the research that we do, many of the members of HTO are involved in lots of teaching activities at the department of IT in Uppsala. Some of the courses we teach are in the area of health care, and here we have a very good collaboration with Region Uppsala. The setup of this collaboration is to aim for a win-win between students learning and the Region’s goals and visions. We have collaborated with the Region since around 2004, and it has resulted in many new learning opportunities as well as input to innovations in health care both for the Region and for the nation.

We also work with innovation and development of learning opportunities in our teaching. Åsa Cajander is a member of the Uppsala Computing Education Research Group, and this community gives lots of input and ideas for improvements of courses.

This semester we collaborate with Region Uppsala through our course on Medical Informatics and the course IT in Society. We also collaborate through joint master theses on topics of interest to the Region. We have asked a couple of our current students to write blog posts about their experiences during their thesis work, and this fall the HTO blog will contain a series of blog posts on teaching and learning activities related to the HTO group.

New Article in Press: Patients’ Experiences of Accessing Their Medical Records

In 2012, Region Uppsala gave its 300,000 citizens access to their medical records through a patient portal. Today, the service called Journalen has become the Swedish national service. The DOME consortium is conducting research on the effects of this service on healthcare and has conducted several research studies before, for example, an interview study with cancer patients, with physicians from different specialities, a survey with patients who have read their paper-based records, surveys with nurses and physicians. Given that the service has been launched already a few years ago, we wanted to investigate patients’ experience with the service and their motivation to access their record

Method: National Patient Survey

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
Information security
General questions about information needs, behaviour, and information-seeking styles
Personal health related questions
Demographics

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.

Summary Results

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.

Feature Image by rawpixel on Unsplash

Presentation by Åsa Cajander and Jonas Moll at Medical Informatics Europe

During the first day of the Medical Informatics Europe (MIE) Conference Åsa Cajander and I presented the paper that was introduced in this blog post. Actually, this was the first presentation held by representatives from the HTO group during this year’s combined MIE/Vitalis event, but certainly not the last – we were active on stage, or as workshop leaders, during each and every day!

This particular presentation was based on a study that was conducted within the scope of a master’s thesis project at Uppsala University by Sara Englund and Anastasia Hansman. The project focused on the Swedish patient accessible electronic health record system Journalen (and hence was tightly connected to the DOME consortium) and more specifically on how nurses see that Journalen has affected their work environment and their communication with patients.

The result of the semi-structured interviews conducted with the nurses at a primary care center in Region Uppsala, first of all showed similar as our earlier interviews with physicians – Journalen has changed the interaction with patients, created an increased workload and created uncertainty regarding when to inform patients of results now that the patients can read even unsigned notes. Even though most of the results were in line with results from our earlier research in DOME, one new theme arose from the interview analysis – the need for new knowledge. Several nurses indicated that education was needed, focusing on how Journalen should be used both by patients and in the clinician-patient relationship. This is an important result, which should be taken very seriously.

All conference papers are published open access, so you can find all research presented at MIE here. You can find the paper that Åsa and I presented here.

Stay tuned for more posts about the HTO activities at MIE/Vitalis 2018! 🙂

Physicians, Patients and the Patient-Accessible EHR

Christiane presenting her draft of her doctoral thesis on April 17, 2018

Christiane Grünloh, one of the members of our research group, will soon be defending her PhD thesis. Last week, it was time for her to present a draft of her work, which she plans to defend by the end of the year. I jump on the opportunity to write of few lines on her research, which revolves around the Patient-Accessible Electronic Health Record online.

Christiane is one of the researchers of the DOME Consortium, working on the Development of Online Medical records and E-health services. She has been focusing on investigating the perspective of, respectively, physicians and patients on the EHR online – “Journalen” in Swedish. Research about this topic is particularly important since the implementation of Journalen in Sweden has been a very controversial project. Indeed, while patient organizations predominantly were in its favour, caring professionals were, for the most part, against it.

In her research, Christiane was able to look more closely at the reasons behind physicians’ strong opposition to the idea of enabling patients to access their EHR online. She was also able to investigate what was the value of this service from the patients’ point of view. In doing so, she found that physicians and patients had very different perspectives on the topic, and reflected on ways to bridge the gap between those two groups in order to improve the quality of the patient-physician relationship.

You can find Christiane on Twitter (where she is a very active user!) and LinkedIn. If you were attending the Vitalis / MIE 2018 conference in Gothenburg, you maybe also were able to attend her workshop on “Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer”, which she is held together with Jonas Moll, Isabella Scandurra and Åsa Cajander last Thursday.

PhD Thesis: The Importance of eHealth Innovations: Lessons about Patient Accessible Information

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.

INTERACT 2017 in Mumbai – Part 2

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.

HeartHab

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.

“Mind the Gap” by Max Willis and Antonella De Angeli

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:

INTERACT 2017 in Mumbai – Part 1

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.

Field Trip

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.

Indian women on the bench in front of their house with Arne Berger (TU Chemnitz)

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.

Christiane Grünloh presenting at INTERACT 2017

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.

Patient Accessible Electronic Health Records: Germany on its way to join the club?

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 Techniker Krankenkasse 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.