Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.

Publication date: Mar 05, 2024

International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.

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Concepts Keywords
Jeopardize data sharing
Party patient
Privacy personal health data
Profit public attitudes
Socindex secondary use
systematic review
third party
willingness to share

Semantics

Type Source Name
disease MESH COVID-19
disease VO protocol
disease VO population
disease IDO intervention
disease IDO process
disease VO Canada
disease MESH adverse drug events
disease MESH rare diseases
drug DRUGBANK Methionine
disease VO ineffective
disease VO effective
disease VO organization
disease MESH syndrome
disease MESH autism spectrum disorder
disease MESH cancer
drug DRUGBANK Isoxaflutole
disease VO company
disease MESH educational attainment
drug DRUGBANK Coenzyme M
disease MESH marital status
disease VO frequency
disease IDO quality
disease VO time
disease IDO entity
disease IDO symptom
disease IDO country
drug DRUGBANK Silver
disease IDO healthcare facility
disease MESH AIDS
disease VO organ
drug DRUGBANK Methylergometrine
drug DRUGBANK Etoperidone
disease VO USA
disease VO report
drug DRUGBANK Dextrose unspecified form
disease VO storage
disease MESH sudden cardiac arrest
disease VO device
disease MESH myotonic dystrophy
disease IDO site
drug DRUGBANK Trestolone
disease MESH rheumatoid arthritis
pathway KEGG Rheumatoid arthritis
disease MESH Arthritis
disease MESH asthma
pathway KEGG Asthma
drug DRUGBANK Trihexyphenidyl
drug DRUGBANK Profenamine
disease MESH Sexually Transmitted Infections
disease IDO disposition

Original Article

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