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.