Empowerment or anxiety? Research on deployment of online medical E‐health services in Sweden

Abstract

Editor's Summary As early e‐health efforts progress, it is critical to step back to study their effectiveness and inform expanded implementation. The DOME project is a Swedish research initiative to examine the methods and implications of providing patients access to their own medical records and other e‐health services. The focus is on SUSTAINS, a patient access system established in 2012 in 11 European countries. Sweden's Uppsala county opened access to residents to view their electronic health records with provider notes, lab results, diagnoses and treatments in late 2012. Pre‐ and post‐implementation studies are being carried out through DOME and mixing with the public debate on benefits and drawbacks of easy online access to personal health information. Supporters and critics share concern for quality of care and data security. But advocates focus on better decisions by empowered patients, while detractors, including many healthcare providers, see patient anxiety resulting from insufficient information and lack of consultation. The DOME project is providing the opportunity to analyze all sides of expanded access to electronic health records.

Exploring patients’ perceptions of accessing electronic health records: Innovation in healthcare

“…Although this study was limited by the relatively small sample, we believe that our results provide insight into an understudied area of providing patients access to their EHRs in a setting outside of the U.S and the OpenNotes Project. Previous Swedish studies have, except for Rexhepi et al, 37 mostly focused on the development and usability issues of this type of service, 47 the public debate, 48 privacy issues 49 745% (25) Become worried about the information that can be read (n=56) -11% (6) 41% (23) 16% (9) 32% (18) Become upset about the information that can be read (n=56) 4% (2) 5% (3) 38% (21) 9% (5) 45% (25)…”

Pregnant women's view on the Swedish internet resource Drugs and Birth Defects intended for health care professionals

“…The vast majority of the staff were regular users of the database, in contrast to the pregnant women, who in most cases read only a few texts to be able to answer the questionnaire. However, health care professionals have had similar doubts about patients accessing their own medical records .…”

“…It is, however, quite difficult to find consistent, evidence‐based information . There is generally an increasing amount of medical information accessible to patients that previously was only available to health care workers, for example personal medical records . However, studies of the effects when lay people use this kind of information are still sparse .…”

Editorial: Personalized Digital Health and Patient-Centric Services

“…Cijvat et al confirm that implementation can be challenging, comparing the implementation of PAEHRs in Sweden and the Netherlands. The main barriers identified in both countries are resistance from healthcare professionals (Huvila et al, 2013;Cajander and Grünloh, 2019), and technical barriers. Facilitators vary across the two contexts, but both countries describe stakeholder engagement (including patients and healthcare professionals) and strong leadership as critical success factors.…”