gms | German Medical Science

Background: Sharing of health data, with healthcare providers and for other purposes such as research, is currently under intense debate, e.g. in the context of the Electronic Health Record (EHR) or the European Health Data Space (EHDS). However, the willingness of patients to share their health data is still relatively low. Hearing the patients' voice is therefore crucial to identify and better understand their needs in order to increase their motivation to share data.

Objective: Due to the large number of already existing reviews and to avoid research waste, an umbrella review was conducted with the aim of summarizing and qualitatively assessing the current evidence on the factors influencing patients' willingness to share their digital health data.

Methods: A systematic electronic literature search was conducted in June 2023 using MEDLINE and Embase via Ovid, and Scopus via Elsevier, complemented by a hand search and forward and backward citation tracking. Reviews, published between 2013 and 2023 were identified using predefined inclusion and exclusion criteria. Two reviewers independently screened titles, abstracts and full texts and individually assessed methodological quality using the R-AMSTAR2 tool. A protocol was previously registered in PROSPERO (CRD42023429302).

Results: Out of 3,199 potentially relevant hits 11 reviews were included. The R-AMSTAR2 overall confidence rating indicated that all included reviews were of critically low quality. A total of 321 primary studies were included with heterogeneous study designs, mostly quantitative studies (158/321, 49%) and qualitative studies (108/321, 34%), therefore no effect sizes could be calculated. To consolidate the evidence on the different outcomes and reported measures, the influencing factors were categorized into 38 sub-dimensions indicating the direction of influence. The sub-dimensions were grouped into 15 main categories: socio-economic (10/11) and socio-demographic (9/11) factors, privacy and security concerns (9/11), health conditions (8/11), personality traits (e.g. social responsibility; 7/11), knowledge and understanding (6/11), user resistance reasons (e.g. concerns of being stigmatized; 5/11), facilitating conditions (e.g. trust, confidentiality and transparency; 5/11), technological conditions (4/11), expected usefulness (4/11), ease of use (4/11), social influence (4/11), expected public benefit (3/11), previous experience with the healthcare system (3/11), and lifestyle aspects (2/11). While some factors clearly act as facilitators (e.g. expected usefulness or ease of use), and others clearly act as barriers (e.g. privacy and security concerns or user resistance reasons to share data), there is an inconsistency in the results for other factors, such as health conditions or socio-demographic factors.

Implication for research and/or (healthcare) practice: With 38 factors identified, our review has shown that influencing patients' willingness to share data is a complex challenge. It is not feasible to consider all of these factors from the outset when developing and implementing data sharing concepts. Thus, participatory design approaches within an iterative development cycle in close collaboration with patients with different characteristics and perspectives would help to develop widely accepted data sharing concepts. However, the quality of all 11 included systematic reviews was critically low, so additional higher quality research is needed.

Funding: Individual funding (BMG, DRV, BMBF, DFG, etc); Project name: Personal Mastery Health & Wellness Data (PATH); Grant number: 16KISA100K

The authors Deckert and Scheibe share the last authorship.