eHealth records better for patients than predicted
Patients favour eHealth records more than healthcare professionals did before online patient medical records were introduced. A research group at Uppsala University has followed the perceptions and experiences of both doctors and patients in the years before and after the introduction of the eHealth service called Journalen in the Uppland region in 2012. The results show that concerns doctors felt in the past are to some degree unjustified today.
Information TechnologyFoto: Mikael Wallerstedt
“I think that the study clearly shows how doctors and patients have different perspectives on the use of eHealth services. Since their experiences are so diverse, we need to actively include both of these groups in developing and introducing eHealth services for patients,” says Åsa Cajander, a professor in the Department of Information Technology at Uppsala University and a member of the Health, Technology and Organisation research team.
In 2012 it became possible for all residents in the Uppsala region to log in and read their own medical records online. Other county councils have subsequently gradually joined the service, Journalen, which is accessed via www.1177.se, the Healthcare Guide (Vårdguiden) website. In addition to notes from healthcare visits, Journalen contains information such as vaccinations, referrals, diagnoses and test results.
Four main areas of concern for doctors
Many doctors expressed great concern when online health records were introduced in Sweden. They were particularly concerned for the patients’ sake. An interview study from the year after the introduction indicated four main areas that worried doctors:
- Since the health records are primarily a tool for healthcare professionals, they are based on technical language. Doctors worried that patients would find it difficult to understand content and would not understand test results and referrals. In the doctors’ opinion, this meant the records would have no value to patients, so Journalen would not contribute to any improved patient involvement in healthcare.
- Doctors worried that patients who did not understand the text and test results would need more time and help than before. Patients would raise questions, consultations with patients would take longer and this would place a burden on healthcare professionals.
- Journalen would affect work processes in healthcare. The doctors think patients should not get immediate access to test results and medical notes, but that they should first be able to read them after a couple of weeks.
- The fourth area that concerned doctors was the feeling that the patients would monitor the doctors to see if they made mistakes and that the system would be used to supervise what the doctors do.
In a study conducted in 2018, researchers investigated what patients in the survey had done five years after Journalen was introduced. The patients responded to questions related to the four areas that concerned the doctors.
The analysis shows that doctors’ fears fail to correspond with the experience of patients. Journalen proved to be a tool for many patients, who believe they have benefited greatly from the service. Patients also do not feel that they contact healthcare professionals with questions for the most part. Instead they turn to acquaintances or the Internet to get answers to questions. Regarding access to medical notes and test results, a large majority of the patients say they want to have access to them as soon as possible.
Finally, the study shows that only a few patients use the eHealth records to monitor whether they have received the wrong treatment or the wrong diagnosis or that they missed out on tests that should have been done. Instead the majority uses the system to obtain information about their disease, to recall previous visits to the doctor or to find test results.
Why do doctors and patients have such different perceptions?
“People have different impressions and interpretations based on their experiences and perspectives. It is natural for them to express different views. But this means that you cannot use a doctor’s interpretation of patients when developing eHealth services. You need to involve patients directly,” says Åsa Cajander.
The study was conducted by researchers from Dome, the national research consortium, which has the goal to create and disseminate knowledge about the implementation and use of eHealth records online and other eHealth services where researchers from six universities collaborate on studies about eHealth services online.
Professor Åsa Cajander, from the Health, Technology and Organisation research team at Uppsala University, headed the study.
Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders. Artikeln presenterades på konferensen ACM Conference on Human Factors in Computing Systems