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sum: Germany is way behind and it seems to me that we put millions of Euros into a technology that is probably already outdated when it’s finally implemented.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.

Several guest researchers visiting us this week!

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!  🙂

Vitalis 2017 and the case for coordination

With 180 exhibitors and a huge number of presenters Vitalis 2017 was indeed vital. For a first time visitor such as myself it really made the impact of e-health on society tangible.

The exhibitions gave an understanding of the actors in the field, raging from service designers to robotics. (Plus more espresso than a man could drink, though I tried.) The presentations showcased how the same technology was introduced and effected health care on a many different levels. The combination of exhibition and presentation also created a nice tension between the promises of technology and the sometimes more complicated implementations of the same technology.

Given the sheer number of parallell sessions it was impossible to cover more than a few select presentations. The DOME consortium, of which we are a part, had great visibility with a track of its own. Jonas Moll of the HTO-group has written more on this topic. Quite impressive was also the fact that our students had been invited to give their view on the future of health care. Given how professional they were, I would say it looks promising. I also enjoyed the presentation made by Carl Johan Orre from Malmö University on the topic of person centered technology.

I might be a bit biased but what I found really inspiring was the presentations made by our colleagues from Uppsala University Hospital with whom we are collaborating in a number of projects.

  • Birgitta Wallgren discussed the complexities of large scale implementations in a setting with other ongoing large scale implementations.
  • Annemieke Ålenius and her colleague presented lessons learned from the unplanned and almost week long downtime for the hospital’s patient journal system. While interesting in itself–for instance the comment that soon staff will have no experience of paper based back up routines–they also managed to convey some of the drama from behind the scenes. Still, it was a good thing that the crisis had a happy ending–thanks to a strong group effort from the whole hospital staff.
  • Finally Morten Kildal discussed the various strategic paradigms that have succeeded each other as the solution for health care, including the current concept of value centered care. While no doubt new paradigms will come, Morten Kildal did make a solid case for the benefits of the current strategy–as well as the need for relevant data.

In summary all of the three presentations  stressed the importance of coordination–between implementations, in crisis or in the patient journey. Yet, what I really found positive for our ongoing collaboration was not only the fact that the presentations were analytical and reflective but that the presenters had a strong humanistic outlook.

This also, is promising for the future of eHealth.