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In early 2018, Health Quality Ontario’s (HQO) Patient, Family and Public Advisors Council (PFPAC) asked HQO’s Health System Performance branch to explore the topic of patient access to medical/health records for a potential public report. The council members noted the difficulties of going through the health system without access to their records, highlighting the fact that while Canadians have easy access to banking, tax and other personal information through apps, portals and online accounts, they don’t have similar access to their medical/health records.

Although various jurisdictions across Canada are making progress toward an electronic health record, access to personal health information continues to be out of reach for many. A 2018 Canada Health Infoway Survey found that 74% of respondents in Ontario wanted electronic access to their health records but didn’t have it.

In response to PFPAC’s request, HQO worked with the Accessing Centre for Expertise (ACE) at the University of Toronto’s Institute for Health Policy, Management and Evaluation (IHPME) to conduct a rapid review of existing literature on the effects of patient access to their own medical/health records. The rapid review included 91 of 1808 articles published between 2003 and 2018; 20 were review articles and 71 were original research studies. Studies captured paper as well as electronic and web-based records (e.g., patient portals).

Most of the selected literature focused on the effect of access on the patient (n=90), particularly with respect to health outcomes and patient experience/satisfaction. To a lesser extent, articles focused on the effects on medical practice (n=47) and on the patient-provider relationship (n=31). A large proportion of the research centered on the impact on disease-specific populations, and in primary care and hospital settings.

The review article results indicate that the effects of patient access to their own medical/health records are inconclusive or neutral at best. There appears to be moderate evidence that supports patient access on several evaluation measures (i.e., health outcomes, patient satisfaction, patient involvement, patient empowerment, patient-provider communication, and cost) but even these studies had mixed outcomes. However, most of the original research studies reported overall positive findings (79%) with only 13% reporting an overall neutral effect. Less than 5% of studies reported mixed impacts or negative effects. While there were few overall negative findings, some negative outcomes were reported in both the review articles and original research studies. These were related to comprehension of records, distress caused by access, healthcare resource consumption, healthcare provider attitudes and workload.

This topic is an emerging research area. As personal access to medical/health records increases, we will likely see more robust research in this area. For now, the results support continued improvements in patients having access to their own medical/health records.

Questions:

• Do your patients have access to their medical/health records?
• How do your patients use this information to inform their care?