Patient Accessible Health Care Records are (much) Better for Patients than What Physicians Anticipated

Patients are more positive about e-journals than what the medical profession anticipated before the online-based patient records were introduced. Our research group has followed both the doctors ‘and patients’ experiences and experiences during the years before and after the introduction of the e-journal Journalen in Region Uppland. The result shows that the anxiety that the doctors knew earlier is partly unfounded today.

– I think that the study clearly shows how doctors and patients have different perspectives on the use of e-journals. Since their experience is so diverse, one needs to actively include both these groups in the development and introduction of eHealth services for patients, says Åsa Cajander, professor at the Department of Information Technology at Uppsala University, in the research group Health, Technology and Organization.

In 2012, the opportunity was opened for all residents of Region Uppsala to log in and read their own journal via the net. Other county councils have subsequently gradually joined the service, Journalen, which is accessed via the 1177 Healthcare Guide’s website. The journal contains, in addition to notes from the care visit, information on, for example, vaccinations, referrals, diagnoses and test results.

Many doctors reacted with great concern when a journal was introduced via the network in Sweden. Especially, they were worried about the patients. An interview study done the year after the introduction showed four main areas where doctors worried:

1. As the journal is primarily a working tool for the healthcare staff, it is based on the subject language. The doctors were concerned that it is difficult for patients to understand and that patients do not understand test results and referrals. Reading their journal is therefore not of value to the patients, the doctors perceived, and the Journal will therefore not contribute to any improved patient involvement in the care.

2. Doctors worried that patients would need more time and help than before, when they did not understand the text and test responses.

3. The journal will affect the work processes in the care. The doctors therefore think it was important that the patients do not have direct access to test results and journal entries without them being able to read until after a couple of weeks.

4. The fourth area that the doctors worried was the feeling that the patients were checking the doctors to see if they were doing wrong – and that the system will be used to monitor what doctors do.

In a study conducted in 2018, we examined what the patients did in a survey study five years after the Journal was introduced. The patients answered questions that were linked to the four areas that the doctors worried about.

The analysis shows that doctors ‘concerns do not match the patients’ experience. The journal turned out to be a working tool for many patients who consider themselves to be of great benefit to the service. The patients also do not feel that they are to a large extent contacting the healthcare staff on questions without turning to acquaintances or the internet to get answers to questions. As far as access to journal entries and test responses is concerned, a large majority of patients consider that they want access to these as soon as possible.

Finally, the study shows that only a few patients use the e-journal to check if they have received the wrong treatment in any way, the wrong diagnosis or that they have missed the samples to be taken. Instead, the majority use the system to get information about their illness, to remember previous medical visits or find test responses.

How can it be that doctors and patients have such a different experience?

– People have different experiences and interpretations based on their experiences and perspectives. It is most natural that they present different images. However, this means that you cannot use doctor’s interpretation of patients when working with eHealth development, but you need to involve patients directly, says Åsa Cajander.

The study is run by researchers from the national research consortium Dome, whose goal is to create and disseminate knowledge about the introduction and use of patient records via the network and other eHealth services where researchers from six universities collaborate on studies on the journal via the network.

Electronic Health Records Are More Than a Work Tool: Conflicting Needs or Direct and Indirect Stakeholders. The article was presented at the conference ACM Conference on Human Factors in Computing Systems, https://dl.acm.org/citation.cfm?id=3300865

This blog post is a translation of the press release of the paper that was in Swedish and can be found here.

Åsa Cajander

Professor at Uppsala University
Åsa Cajander the research leader of the HTO research group. She is Professor of Computer Science with a Specialization Towards Human-Computer Interaction at Uppsala University.

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