Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Mar 7, 2022
Date Accepted: Jul 31, 2022
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
What Makes a Patient Active?: A Scoping Review of the Facilitators and Barriers to Patients Actively Managing their Medical Data in a Personal Electronic Health Record
ABSTRACT
This scoping review explores the barriers and facilitators patients face when deciding to share, update, or modify their personal and medical data (e.g., data that is relevant across illness episodes, such as patients’ medications, allergies, immunizations, and their medical, social, and family health history) in their personal electronic health record (PEHR). Current review explores the extent to which patients’ level of data management impacts the quality and safety of care, and patients’ satisfaction with the care delivered. Online databases Medline, EMBASE, CINAHL, PsycINFO, Cochrane Library, Web of Science, and Google Scholar, as well as reference list of all primary and review articles were searched using a predefined search query. Out of the 474 eligible papers, 37 provided sufficient information about patients’ data management activities. Results showed that patients prefer to be passive rather than active users of their PEHR. In addition, patients refrain from generating and managing their medical data, especially when this data is complex and sensitive. Reasons for patients’ passive behavior were related to their concerns about the validity, applicability, and confidentiality of patient-generated data. Current findings suggest recommendations for implementing design features within the PEHR and the construal of a dedicated policy to inform both clinical staff and patients about the added value of patient-generated data. Moreover, clinicians should be involved as important ambassador in informing, reminding, and encouraging patients to manage their data in their PEHR
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