DISA – HTO

HTO and DISA planning activities

Last Monday, two workshops aimed at framing and planning future work activities were conducted within the HTO group. The first one concerned different aspects of the work environment within the HTO group and the second activity aimed specifically at planning the DISA project.

During the HTO workshop, we used the affinity diagram technique to map out aspects of the work environment that we liked and aspects where we felt improvements were needed. We started out by writing down our thoughts about good and not so good aspects on post-its for a few minutes whereafter we gathered by a whiteboard on which we arranged our positive remarks in columns with related notes. After all notes had been added to the whiteboard each column was labeled to make it clear which areas worked well. Among the identified positive aspects were; good support and organization, good athmosphere and good ability to communicate to the public. When we were done with the positive side we did the same for the negative aspects that needed some degree of improvement. Among the negative aspects we found; somewhat unclear boundaries between pojects, hard to get an overview of what everyone is doing and sometimes too much information in the HTO slack channels.

Later on the same day we had the workshop for planning the DISA project. Diane, Ida and I planned the workshop and invited the other DISA members to the two hour activity. Everyone started out by writing down 2-3 studies they would like to perform within the scope of the project (some of these studies had already started). This was to make sure that every participant got the chance to express what they wanted from the project. Those who could not attend sent their ideas to one of the participating colleagues before the workshop. After about 15 minutes everyone presented their ideas shortly and put their notes on the whiteboard. Again, the affinity diagram technique was used to cluster ideas from different participants into categories. On the picture above Diane has just started the process of assigning a label to each of the categories. On the poster to the left of the post-its the main parts of the DISA project are mapped out. The next step was to match the proposed studies to the different parts of DISA shown on the poster. This exercise resulted in a study being added – this was needed in order to make sure that the last year of the project was sufficiently covered.

The second hour of the workshop was devoted to placing the proposed and already ongoing studies on a timeline, drawn on another whiteboard, which contained relevant deadlines (like conference submission dates, special issue deadlines and dates when individual project members’ contracts with the University went out). After we had placed the studies we were conducting, or wanted to conduct, during the first year on the timeline we added information about who should lead the different studies. The end result of this workshop activity was the timeline which clearly showed all the important dates, studies and responsibilities.

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.

A holistic perspective on designing for people: service design

During his short visit two weeks ago, José Abdelnour Nocera from the University of West London held a presentation on service design. I was very curious to learn more about the topic since it was a term I had stumbled upon not only throughout my Master’s studies in relation to user-centered design, but also in countless job advertisements back when I was looking for work in the industry. I had always wondered in what way service design differed from “traditional” user-centered design, and whether my skills as a user-centered interaction designer could be extrapolated to the field of service design.

As I have understood it, the main difference between user-centered design as it is understood within human-computer interaction and service design resides in the concept of “service” as opposed to that of “product”. Service design aims at considering a product’s usage flow from a holistic perspective, from acquisition of the product (and corresponding service) to “liquidation” or end of service subscription. The product is seen as only one mean to access the service, as a mediator between the user and the service – and one that only gets its value from the service it grants access to. One of José’s examples I found very telling is that of Apple’s iPod: when one buys an iPod, one does not buy it because the device in itself is better than other MP3-players on the market, but rather because it enables us to enjoy iTunes’ offers. The iPod’s value thus does not reside in the device itself, but in the service it is associated with – the cheap and almost unlimited access to music through the iTunes store.

An interaction designer would focus on how a product is to be used, answering such questions as: what are the features the user needs, what does the user need to be able to do with the device? How will she interact with and control the device? However, a service designer would take a much broader perspective and seek to answers questions such as: how will the user learn about the product and the corresponding service? How will she set-up the device and activate the service? How will she routinely access the service? And even, how will the user terminate the service / get rid of the device?

Service design is not new and re-use many different concepts from other fields, most notably user-centered design and system design. Nonetheless, I appreciated seeing how a more holistic approach can lead to the creation of a better user experience that is not limited to the use of a product, but which comprises everything that is related to it (informing oneself about the product, getting familiar with it etc.). Service design fundamentally consists in taking a step back and considering the prerequisites and context of use of a product, a mindset that I think may be helpful in many other domains as well, including healthcare.

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! 🙂

HTO are Members of the eHealh Council at the National Board of Health and Welfare in Sweden

Jonas Moll became a member the council for eHealth and national information structure (e-hälsorådet) at the National Board of Health and Welfare (Socialstyrelsen) in Sweden. He wrote a blog post about it found here.

Åsa Cajander is also a member of the same board, and we contribute with our different knowledge and expertise to the work done.

Presenting the DISA project at Vitalis 2017!

Earlier today, Ida and I presented the DISA project at Vitalis 2017. The project is dedicated to investigating the effects of digitization on nurses’ work environment. The outline of the project is described in the leaflet shown above, which can be downloaded here.

DISA will be ongoing for three years and comprises three different work packages, each with a slightly different focus. The poster shown below illustrates the structure of the DISA project and provides some more detail on the project’s core research questions.

We are altogether 7 researchers working on DISA under Åsa’s supervision. However, not all of us work on the same topics and with the same hospital departments. As such, Jonas and Christiane mainly work with the EPR online and the oncology department at the Uppsala University Hospital, while Lars, Ida, Gerolf, Minna and me primarily work with nurses’ digital work environment and two different hospital departments: the surgery department at the Uppsala University Hospital and the department for blood and tumor diseases at the Uppsala Children’s hospital.

Read about the Disa project in the folder “10 projekt om arbetsmiljö i kvinnodominerade sektorer”

Forte has produced a report about the projects that have been funded within their call for work enviornment research in women dominated professions. The Disa project is found on the last page.

The folder is found here (in Swedisg): http://forte.se/wp-content/uploads/2017/04/kvinnodominerade-sektorer-webb.pdf

Recommended read for the curious person!