Patient Rationales Against the Use of Patient-Accessible Electronic Health Records: Qualitative Study

Abstract

Background: Patient-accessible electronic health records (PAEHRs) enable patients to access their health records through a secure connection over the internet. Although previous studies of patient experiences with this kind of service have shown that a majority of users are positive toward PAEHRs, little is known about why some patients occasionally or regularly choose not to use them. A better understanding of why patients may choose not to make use of digital health services such as PAEHRs is important for further development and implementation of services aimed at having patients participate in digital health services.

Objective: The objective of the study was to explore patients' rationales for not embracing online access to health records.

Methods: Qualitative interviews were conducted with 40 patients in a department of internal medicine in a Norwegian hospital in 2018-2019. Interview transcripts were subjected to thematic content analysis. In this paper, we focus on the subject of nonuse of PAEHRs.

Results: We identified 8 different rationales that study participants had for not embracing PAEHRs. When patients reflected on why they might not use PAEHRs, they variously explained that they found PAEHRs unnecessary (they did not feel they were useful), impersonal (they preferred oral dialogue with their doctor or nurse over written information), incomprehensible (the records contained medical terminology and explanations that were hard to understand), misery oriented (the records solely focused on disease), fear provoking (reading the records could cause unwanted emotional reactions), energy demanding (making sense of the records added to the work of being a patient), cumbersome (especially among patients who felt they did not have the necessary digital competence), and impoverishing (they were skeptical about the digital transformation of individual and social life).

Conclusions: It is often assumed that the barriers to PAEHR use are mostly practical (such as lack of hardware and access to the internet). In this study, we showed that patients may have many other valid reasons for not wanting to adopt this kind of service. The results can help guide how PAEHRs and other digital health services are promoted and presented to patients, and they may suggest that the goal of a given new digital health service should not necessarily be full uptake by all patients. Rather, one should recognize that different patients might prefer and benefit from different kinds of "analog" and digital health services.

Keywords: active patients; electronic health records; open notes; participation; patient portal; patient-accessible electronic health records; patients’ perspective.