Health data sharing attitudes towards primary and secondary use of data: a systematic review

Background To receive the best care, people share their health data (HD) with their health practitioners (known as sharing HD for primary purposes). However, during the past two decades, sharing for other (i.e., secondary) purposes has become of great importance in numerous fi elds, including public health, personalized medicine, research, and development. We aimed to conduct the fi rst comprehensive overview of all studies that investigated people ' s HD sharing attitudes - along with associated barriers/motivators and signi fi cant in fl uencing factors - for all data types and across both primary and secondary uses. Methods We searched PubMed, MEDLINE, PsycINFO, Web of Science, EMBASE, and CINAHL for relevant studies published in English between database inception and February 28, 2023, using a prede fi ned set of keywords. Studies were included, regardless of their design, if they reported outcomes related to attitudes towards sharing HD. We extracted key data from the included studies, including the type of HD involved and fi ndings related to: HD sharing attitudes (either in general or depending on type of data/user); barriers/motivators/bene fi ts/ concerns of the study participants; and sociodemographic and other variables that could impact HD sharing behaviour. The qualitative synthesis was conducted by dividing the studies according to the data type (resulting in fi ve subgroups) as well as the purpose the data sharing was focused on (primary, secondary or both). The Newcastle - Ottawa Scale (NOS) was used to assess the quality of non -randomised studies. This work was registered with PROSPERO, CRD42023413822. Findings Of 2109 studies identi fi ed through our search, 116 were included in the qualitative synthesis, yielding a total of 228,501 participants and various types of HD represented: person -generated HD (n = 17 studies and 10,771 participants), personal HD in general (n = 69 studies and 117,054 participants), Biobank data (n = 7 studies and 27,073 participants), genomic data (n = 13 studies and 54,716 participants), and miscellaneous data (n = 10 studies and 18,887 participants). The majority of studies had a moderate level of quality (83 [71.6%] of 116 studies), but varying levels of quality were observed across the included studies. Overall, studies suggest that sharing intentions for primary purposes were observed to be high regardless of data type, and it was higher than sharing intentions for secondary purposes. Sharing for secondary purposes yielded variable fi ndings, where both the highest and the lowest intention rates were observed in the case of studies that explored sharing biobank data (98% and 10%, respectively). Several in fl uencing factors on sharing intentions were identi fi ed, such as the type of data recipient, data, consent. Further, concerns related to data sharing that were found to be mutual for all data types included privacy, security, and data access/control, while the perceived bene fi ts included those related to improvements in healthcare. Findings regarding attitudes towards sharing varied signi fi cantly across sociodemographic factors and depended on data type and type of use. In most cases, these fi ndings were derived from single studies and therefore warrant con fi rmations from additional studies.