Category Archives: 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:

See you at the workshop!

“Digital Health – a Patient Perspective” by Maria Hägglund

Maria Hägglund from Karolinska Institutet did a very interesting presentation on the “Digital Health – a Patient Perspective” as a part of the BioMed IT Arena at the Department of Information Technology at Uppsala University.

Maria Hägglund discussed the word “patient”, and that it is a very diverse group. She asked the audience who see themselves as patients, and indeed very few did.  She then explained that some people who have chronic conditions do not even see themselves as patients when they are not in visiting a doctor or similar. Others, however,  see themselves as patients when they have cold. Being a patient is a role that one can have in some situations, but mostly you are not a patient but a person who lives his/her life.

Maria Hägglund continued by concluding:

When we are designing tools for patients, who are these people?

Many patients are doing many things for themselves in self-care. Some of the patiens are very knowledgeable and ePatients, and know more about how it is to be a patient than the doctor. Health care professionals need to see patients as co-creators of knowledge. Maria Hägglund also gave examples from Sara Riggare who does research on patient empowerment at the same time as she is a patient herself. Selfcare is a large part of her life, and visits to the doctors is really only once a year.

Maria also described a study on lung cancer patients and their experience from health care. She says that many patients loose trust in the health care system and that they therefore call and ask, and make sure that the information has reached the right person in health care. The health care system makes patients not trust it sometimes.



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!

DOME in TV News

There was a piece of news on Swedish TV the other day (the 8th of August) on medical records online and the DOME research.  They did an interview with me at work, and I got 5 sek of fame on TV regarding our research.

I will try to sum up some of their points from the TV news in this short blog. Some of the things said in the TV program can also be found in three articles that they have written on the same topic. I link to the Swedish articles in the text:

  • Medical records have been accessible online since 2012 in one of Sweden’s counties, and in a few years they will be available throughout Sweden. However, in the current implementation patients see different pieces of information in different counties. This is problematic from the patients’ perspective. Some county councils show all infomration as soon as it is available, whereas some wait two weeks until they let the patients access the information. Notes written by psychiatry are visible in some counties, and not in others. The TV program also toughes on the implementation process, and questions if this implementation is a good idea. Inera answers that the system would not have existed if they would have insisted on the same rules within the whole country.  Read a full Swedish text here, and enjoy the image of my red nails in the article. 😉
  • They also presented an TV interview with a patient who uses medical records online. She describes that she uses the system to check test results and to remember what has happened in her treatment. Read the Swedish text on part of the program here
  • Physicians are often worried about the patients in relation to medical records online. Will they worry about what they read? Will they misinterpret? Patients who use the system, on the other hand, find it useful and helpful.


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! 


Swedish INERA Report about DOME research on Medical Records Online

Now our report on all DOME research on the patients’ and professionals’ perspective is out. It summarises the most important findings (in Swedish). The report is written by me and Rose-Mhaire Åhlfeldt from DOME but is based on research from the whole team in DOME.

The e-health service Journalen is here to stay. Patients are positive and see it as their right to see the medical records online. But health care staff are worried about this possibility, until they become patients themselves, and then their trust in the system increases.

You find the report here


Workshop on Critical Incidents when Designing, Developing and Deploying eHealth Systems

Welcome to a very interesting workshop on critical incidents when designing, developing and deploying eHealth Systems. The workshop is organised in conjunction with NordiCHI 2016 in Gothenburg. I am organising the workshop together with several other DOME researchers


Call for participation