Factors influencing patients’ willingness to share their digital health data for primary and secondary use: a theory- and evidence-based overview of reviews (Preprint)
Authors: Fesl Sabrina , Lang Caroline , Schmitt Jochen , Brückner Stefanie , Gilbert Stephen , Deckert Stefanie , Scheibe Madlen 
Published: August 2024

BACKGROUND

Sharing of health data (HD) is currently under intense debate, for example in the context of the European Health Data Space (EHDS). Although HD sharing holds great potential, the corresponding determinants of patients are still uncertain. Hearing the patients’ voice is therefore crucial to better understand their needs and increase motivation for HD sharing, which is essential for the beneficial utilization of HD with their healthcare providers (known as Primary Use (PU)) and for purposes other than patient care like research (known as Secondary Use (SU)).

OBJECTIVE

We conducted an overview of reviews to provide a meta-level synthesis on the research question “Which factors influence patients’ willingness to share their digital health data for primary and secondary use?”.

METHODS

This overview has been registered before starting the review (PROSPERO reference CRD42023429302). An electronic literature search was performed in June 2023 using MEDLINE, Embase and Scopus, complemented by additional searches. We included systematic reviews (SRs), published between 2013 and 2023, that focused on determinants influencing patients’ willingness for HD sharing. All initial records were screened in a multi-stage process. After pretesting, the data extraction and quality assessment with R-AMSTAR2 were carried out by one reviewer and verified for accuracy and completeness by a second reviewer. Factors were clustered and categorized following a combined deductive-inductive thematic coding process. As a theoretical basis for category development, available theories on HD sharing and technology acceptance were considered.

RESULTS

A total of 11 SRs was included, published between 2014 and 2021, incorporating 321 papers with heterogeneous study designs, mostly quantitative (158/321, 49.2%) and qualitative (108/321, 33.6%). A total of 41 influencing factors compiled into 15 main categories were identified. For PU, 22 factors were found as facilitators, nine as barriers and four could not be clearly assigned. For SU, 13 factors turned out as facilitators, six as barriers and six were inconsistent. The most important facilitators investigated were higher education status as well as trust, confidentiality and transparency on data sharing approaches, both for PU and SU, and higher income for PU only. The most important barriers determined were existing privacy and security concerns and concerns on data processing, both for PU and SU. The R-AMSTAR2 overall confidence rating indicated critically low quality for all included SRs.

CONCLUSIONS

The review identified modifiable and non-modifiable facilitators and barriers as relevant. If policymakers, healthcare providers or researchers aim to increase the willingness of patients towards HD sharing they should focus on modifiable factors such as expected individual usefulness, public benefit or privacy and security concerns. Due to the critically low quality of all included SRs more high-quality SRs are needed to enable the derivation of reliable, evidence-based recommendations and to develop a holistic framework for practice.

CLINICALTRIAL

PROSPERO: CRD42023429302, registered on 04/06/2023; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=429302