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.

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