Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review (Preprint)

Abstract

BACKGROUND Learning Health Systems rely on the secondary use of health data to improve care. Transparency regarding this secondary use is frequently cited as necessary to increase patient awareness, support alternative approaches to consent, and foster trust. OBJECTIVE To review the current published literature to identify different stakeholders’ perspectives and recommendations on what exactly should be communicated to members of the public regarding the secondary use of health data for research, how and at what conditions. METHODS Using PRISMA-ScR guidelines, we conducted a scoping review through several bibliographic databases (Medline, CINAHL, PsycINFO, Scopus, Cochrane Database of Systematic Reviews, and PubMed) to locate a broad range of studies published in English or French up to November 2022. We included articles that reported a stakeholder’s opinion or recommendations of what should be communicated to patients or members of the public regarding the secondary use of health data for research, how to communicate the information or at what conditions. Data were collected and analyzed using an iterative thematic approach with NVivo software. RESULTS A total of 178 articles was included in this scoping review. Communication was deemed crucial for many purposes including: a) educating patients and members of the public on the potential benefits; b) giving some control over data use c) as a form of reciprocity and, d) as a condition to build and maintain trust. Elements that should be communicated include generic content such as governance and regulatory frameworks, scientific aims and potential future uses of the data and specific content that is relevant to each person with regards to the use of their data. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content and mixed approaches for specific content including websites, patient portals and face-to-face encounters. Content should be tailored to the individual as much as possible with regards to length, avoidance of technical terms, cultural competence, and level of detail. CONCLUSIONS This review can serve as a foundation for evaluating current communication approaches with regards to secondary use of health data or designing future strategies. Future work will be needed to assess which strategies achieve the greatest outreach while striking a balance between transparency and utilization of resources.