Tag Archives: DOME

What is DOME? Some Words about the Background and the Consortium from My Perspective.

I have collaborated with the county council in Uppsala since 2003 as a part of the project course IT in Society. In this course I collaborate with my husband Mats Daniels who does research on learning environments for developing professional competencies related to IT systems development. The course is based on the teaching strategy of Open Ended Group Projects. Through this course we worked on the topic “Medical Records Online for Patients” a couple of three times between 2003 and 2011. The students did thorough research as a part of their course, and they also wrote one of the white papers that the county council sent to Brussels to get funding for the SUSTAINS project.

Around 2012/ 2012 the large EU project named SUSTAINS started and was coordinated by the county council in Uppsala. Mats Daniels and I were contacted by the project managers Benny Eklund and Leif Lyttkens (with whom we collaborated in the IT in Society course) who asked if we wanted to start a research project and do research on the implementation and consequences of putting medical records online in Uppsala county.

The SUSTAINS project had a meeting in Uppsala around new years eve in 2011/2012 and my husband and I set up a brief document describing the major ideas behind a research project and you still find these ideas in DOME today. These idead were presented at the meeting to see if there were other researchers interested:

  • Three work packages:
    • 1) patients & relatives
    • 2) health care professionals
    • 3) systems development and implementation
  • Multidisciplinary research
  • Studies on the effects of the implementation from different perspectives using both qualitative and quantitative research methods.

My main research areas are IT and work, and how we develop and implement IT for work. However, in DOME I have not only done this but also research looking at the implementation from the patient perspective.

After this initial meeting we organised a few start up meetings in Uppsala for researchers that would be interested in this work. We got help from the EU coordinators at the university to find people, and somehow the words spread and we became a group of around ten people very quickly. I had never met most of these researchers, but we had very open and creative discussions.

During the first years the DOME project had funding from VINNOVA, and the last few years it has changed into a research consortium that consists of  researchers with funding from different sources. This fall we have funding from AFA through the EPSA project, Forte through the DISA project as well as strategic research funding through Örebro University and Uppsala University. This spring there will also be some funding from NordForsk through a new centre for gender research, and from Forte through the PACESS project.

The number of active researchers in DOME has varied over the years, but we are around 12-15 people that participate in meetings and do studies on medical records online. We come from six different universities, and we meet using Skype every three weeks and have a conference every semester at one of the universities. The next DOME conference is organised in Skövde in March 2017. DOME has a small group of leaders, and I am the coordinator of the consortium.

DOME is an open consortium and the only criteria for joining us is that you want to do research in the area of medical records online for patients, and that you spend time with us in DOME.  You can come from any area of research, and any university. 🙂

Experiences from an Expert Workshop in the Area of Medical Records Online for Patients

Last week I organised an expert workshop in the area of medical records online for patients. The workshop was organised in conjunction with the EHiN and International Conference of Telemedicine. Around thirty people attended the workshop, mostly from the different regions in Norway. The workshop information was distributed by us and by INERA who coordinate the introduction of medical records online in Sweden.

The photo for the blog post is from Jonas Moll’s Twitter stream and is a photo of the very cool and well organised conference.

Jonas Moll and me from Uppsala University organised the workshop with Norwegian colleagues: Tove Sørensen and Monika A Johansen from the Norwegian Centre for E-health Research, and also with the excellent Isabella Scandurra, who is a Health Informatics Researcher from Örebro University

The workshop started with a description of the service “Patients’ digital access to their health record”: How much information, which type of journal documents, to how many people, for how long time? with a comparison between the different implementations that exist in Sweden and in Norway. One difference is for example that the primary care notes are not shared online in Norway, and another difference is that Norway do share psychiatry medical records online which we don’t do in Sweden.
We continued with a role play to start up the discussion about who should have access. Jonas Moll did the role play together with Isabella Scandurra and me, and the aim was to present the problematic situation that exists for patients since the information that is shown varies very much between counties. Jonas presented his view as a patient and asked about what could be seen online. I pretended to be Uppsala County Council and tried to make Jonas move to our county. During the role play my best argument to him as a patient was the possibility to see the test results online in our county, and to have graphs made that represent the fluctuation of the test results over time.
We then discussed what type of journal documents should be provided. There has been long discussions in Sweden regarding the children’s medical records, and in Norway they have also had discussions about the appropriateness of showing the medical records online for people with cognitive disabilities.

Most probably we will arrange a similar workshop at Vitalis together with INERA to facilitate the discussion around what should be shown and to whom. See you there!

Patient Empowerment of the Future – Hälsa för mig by Helene Richardsson

Helene Rickardsson made a very interesting presentation about “Hälsa för mig” that I listened to the other day. Hälsa för mig is an eHealth service provided by the eHealth Authority in Sweden for patients. The service makes it possible for patients to securely store their data related to health, and patients can also use other services such as health apps to change, delete or create new information. The image for the blog post is not an image of the system as such, but more a general idea of what it could look like.

Hälsa för mig will also connect to the patients electronic health record Journalen, so that the patients can use this information in connection to other services such as applications about exercise, blood sugar, sleep and food. Hälsa för mig is a service provided from the authorities where information is securely stored (or as securely as possible), and where the national eID is used for logging in.

The system Hälsa för mig will start run as a pilot in 2017 with vaccinations and lab results in the counties Värmland and Jönköping. There will not be a big launch countrywide, but a stepwise implementation of the system to make sure that the system works properly.

Many of these new eHealth services such as Journalen and Hälsa för mig are made from the perspective of increasing patient empowerment, as research shows that having access to your own information is crucial for being in charge of your own health.

Helene Richardsson gave examples of how this service can be used for securely storing information about blood pressure, weight and data from activity bands such as UP Jawbone and similar.

In the discussions around this service some interesting points came up:

  • The business models for app development in relation to Hälsa för mig are not in place. Very few companies are interested in app development so far. Other countries have experienced the same problems. This is really interesting and a bit sad 🙁
  • The service is in many ways similar to the app Health that iPhone provides. The major difference lies in the storage of data. In the app the data is owned and sold in an anonymous way, in Hälsa för mig it is safely stored without being sold.
  • One can wonder if the autonomous county councils will have their own interpretations regarding the use of Hälsa för mig, just as they have had so far when it comes to Journalen.
  • Do users really think about security and the difference between Hälsa för mig and the iPhone app? Do they ever consider that he information in the app is not really securely stored, and that the anonymized information is sold to different coutries?

One final remark is the health care professionals perspectives on this, and in what way this will affect the work environment in health care. I know from our DOME studies that health care professionals often worry about the patients. They worry that patients will misinterpret information, be worried and not understand the holistic perspective, to give a few examples. In what way do health care professionals think about Hälsa för mig?





DOME conference in Uppsala

Last week we had a conference in Uppsala about the research done on medical records online for patients. We were fifteen people attending the conference, and a few listening in on Skype on the second day. During these days there were many nice discussions and presentations, and this blog will only highlight a few. There will be a separate blog on a presentation about psychiatry care online and research on this launch in Skåne.

Leif Lyttkens talked about the importance of having researchers collaborating with the eHealth developers when launching medical records online for patients. The research consortium has been independent and funded by Vinnova and other research organisations, but we have collaborated with the development project to study for example the problems with cancer patients reading their medical records online (see previous blog post).

Mia Pettersson presented the work with medical records online from INERA’s perspective. She described that the service is mostly used Monday morning, and not during the weekend (see the picture from Mia’s presentation attached to the blog). She also said that there is now around 800 000 users of the system in Sweden, and that there will be even more in the future. INERA gets around 400 questions from patients regarding the functionality of the system, and many questions are about what information can be found, and why some pieces of information is missing. These questions are a result of the very varied implementation in the different county councils. Mia also mentioned that patients in Skåne has a substantial larger amount of questions than people in other counties.

We also presented and discussed the different research projects that we have in DOME and possible collaborations and synergies so that we get the most useful knowledge out of them. Isto Huvila presented the HIBA project, Maria Hägglund and Isabella Scandurra presented their new project, and I presented the Forte project.

We plan to have our next meeting in the spring 2017 in Skövde, and there we will discuss the future work in DOME.


Invitation to Participate in Workshop about Medical Records Online in Conjunction with the EHiN – ETC conference in Osto the 14th of November 2016

Patients’ digital access to their health record: A service for all?

To increase patients’ empowerment and involvement in their own health, several countries have decided to provide patients with digital access to their health record. The approaches differ between and within countries; in some regions most of the journal is digital accessible for patients and in other regions, only a subset of the journal is available online. Based on the experience with patients’ digital access to their health record, the workshop will explore the rationale for designing the service: Is the ambition a digital copy of the full journal for all patients, and if not, what is the rationale for excluding certain groups or types of documents? The workshop aims to increase the knowledge in Europe regarding the patients’ access to their health record by discussing technical, legal, organizational, practical and cultural barriers for a service for all, as well as investigating possibilities for the future.

The workshop is targeting everyone who has experience with using, planning, implementing, or researching a service for patients’ digital access to their health record. The workshop, which is dependent on active participation in discussions, is open for EHIN-participants by special registration on a first come first served basis as there is a maximum number of places. Deadline for registration is 7 November. Participants will receive material prior to the workshop to read as a preparation for the workshop. The workshop is organized by the Norwegian Centre for e-health research and the DOME research consortium, coordinated by Uppsala University, Sweden.

For further information and registration, see:  http://www.ehin.no/sessions/workshop-patients-digital-access-to-their-health-record-a-service-for-all/

See you at the workshop!

Welcome to my Key note at the “Forum for district nurses”, Stockholm 6-7 December 2016″

Welcome to two stimulating days where we focus on the challenges that you as district nurses encounter in your daily work. Together with colleagues from across the country, you will update you on the latest research, take note of successful case studies and learn methods to streamline your administrative work and reduce stress.

I will have a key note at the conference where I present recent research from the DOME project together with other interesting studies related to work as a nurse.

For more information and bookings see: http: //www.conductive.se/konferens-forum-distriktsskoterskor.html#program=talare

If you add the code Talare 10 you will get a lower price at the conference.

Interviews with Cancer Patients Reading their Medical Records Online

When medical records online was launched in Uppsala County Council a few years back many health care professionals were concerned, to say the least. There were for example some very upset discussions especially regarding cancer patients and medical records online, and the possibility to get bad news through a web page.

There were also critical incidents regarding patients reading their test results and getting a cancer diagnosis online, as in the screen shot that is the featured image in this blog post. The article is a Google translation from Swedish, and the original article can be found here.  The news article describes the story of a woman who got to know about her the return (?) of her breast cancer through logging in at a web service. This specific critical incident occurred in 2015.

So the question is:

Is reading your medical records online really a good idea for patients with diseases such as cancer? What do cancer patients in general think about the system? Is it useful for them?

As a result of this turbulence around medical records online and cancer patients DOME did an  interesting study with interviews with 30 cancer patients. I did this study together with my PhD student Hanife Rexhepi (I’m co-supervisor), Associate Professor Rose-Mharie Åhlfeldt and Professor Isto Huvila. We presented this study at Vitalis, and you can see the presentation here (in Swedish), we wrote a Swedish white paper on the study found here and also a journal paper in the Health Informatics Journal.

In the study we found that some cancer patients use the system on a daily or weekly basis for several reasons:

  • They are curious about what it says in the text, and in the test results.
  • To prepare for the next appointment with a physician.
  • To get a feeling of being in control when it comes to their decease.
  • As a memory aid when looking at what has happened so far with their decease.
  • To be able to understand what the physician said in the meeting.
  • To read up on the latest test results, and to compare to previous results.
  • To get the exact information, and not an interpreted oral version.
  • To decrease the waiting times in health care

One of the worries that health care professionals have is that patients would become worried, and some patients said that of course it is worrying to read about the decease sometimes.

“If we can handle to live with all these deceases- we can handle to read about them too”

In our study almost all patients choose the option to see everything at once in the system and not to wait until the information is signed by a doctor. This is also confirmed by statistics that say that 98% of all patients want to read as soon as possible, and do not want to wait for the information to be signed by a doctor. Many patients in our study describe the waiting for results as the most difficult part of being ill, as one patient said:

“For me it is good to read. It is much worse to go around and wait. No one wants to tell you anything.”

One of the more controversial results from the study was that some patients preferred to read about negative development in their cancer, or the occurence of cancer online, as in this quote:

I personally want to know. Even though it is tough. It is not less tough to get to know it a few days later, or by someone who wraps the bad message inside mumbo jumbo words to soften it and says that it is not too bad and so forth. No, I want straight answers.

One should note that all 30 patients in the study thought that being able to read the medical records online is a good reform, and that the system should exist as a possibility for those patients who want it.

I have had a meeting the Oncology department at the hospital to discuss the possibility of doing a follow-up study on patients reading their medical records online. Some of the things we want to understand is the use and non-use of the system, and how it affects patient empowerment. We also need to do a follow up study because there is a risk that the people that we interviewed were early adopters of the system, and we want to find out what the mature users think.

So there are more studies to come in this interesting area!

Patient Empowerment – from what to how

One of the buzzwords in health care is surely patient empowerment. However, as with many words there is no consensus of what it means, and what good practices are connected to it, even though it it widely used both in discussions, in media and in research. This weeks I have been working on an interesting paper on physicians view of this concept “patient empowerment”, and I have also discussed the concept in relation to a workshop dress rehearsal as a part of Uppsala Health Summit. The workshop that I am co-organising there is called “Empowering Towards Healthy Behaviours”. This blog will be about the concept, and the ideas surrounding it with patient centred care and a paradigm shift in health care.

There are numerous definitions to the concept, and it is closely connected to the patient centred world view. Some define empowerment as a process in which we should make individuals think critically and make informed decisions. Some see it as a state that you either have, or don’t have. Some discuss patient empowerment in relation to compliance, and to following the doctor’s instructions even though others see empowerment as the “antithesis of compliance”. 

I am very aware that the ideas of patient empowerment is not always embraced by health care professionals. Some of the professionals that I have talked to, and interviewed feel threatened by the concept. Notably this feeling was more common among young female doctors in this study, but that might have beed only coincidence.

My opinion is:

We need to move away from defining what patient empowerment is, and make a more reflected discussion on how we make it happen. What are the good examples of practices that lead to patient empowerment?  What are the actions needed on all levels of society to make this paradigm shift real? What behaviours from doctors and patients lead to the possibility of patient empowerment? How do we end the silence in communication between physicians and doctors, as described in the book “The silent world of doctors and patients” by Jay Katz. How can technology play a part in this change?

This is an interesting topic, and I will surely come back to it in my blog


New publication: The Record is our Work Tool! – Physicians’ Framing of a Patient Portal in Sweden

A new DOME publication is now out :-).

The publication is found here. It concerns physicians and the effects on their work environment of the system Journalen that lets patients read their medical record online. 

Background to the study

Uppsala County in Sweden launched an eHealth patient portal in 2012, which allows patients to access their medical records over the Internet.

The launch of the portal was critically debated in the media. See for example:

  1. Nätjournal kan bli lexbaseskandal in Västmanlands Läns Tidning
  2. Kritisk till utformning av nätjorunaler in UNT
  3. Nätjournaler kan vara en patientrisk, in Svenska Dagbladet
  4. Kritik mot att nätloggar läggs ut på nätet in Läkartidningen

The professionals were strongly skeptical, and one reason was possible negative effects on their work environment. This study therefore investigates the assumptions and perspectives of physicians to understand their framing of the patient portal in relation to their work environment.

What did we do?

A total of 12 interviews were conducted with physicians from different specialties at Uppsala Akademiska Hospital.

The interviews were transcribed and translated.

What did we find that was interesting?

  • The physicians held a negative attitude and expected changes, which would affect their work processes in a negative way.
  • Especially the fact that patients might read their test results before the physician was seen as possibly harmful for patients and as an interference with their established work practices.
  • They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload.
  • Other perceptions were that the portal would increase controlling and monitoring of physicians and increase or create a feeling of mistrust from patients.
  • Regarding benefits for the patients, most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.

For further information, please read the paper!