“Public attitudes to sharing government data with private industry: a systematic scoping review”

Abstract

BackgroundLinking and analysing large volumes of health data in electronic records, datasets, registries and biobanks can provide detailed insights into the health profiles of individuals, communities, regions and national populations. Good governance for data sharing can be challenging, particularly when private sector organisations are the recipients of public sector data. Many jurisdictions have responded by instituting new regulations and laws related to data protection, responding to calls to promote data sharing and manage associated risks. This review integrates and interprets five years of research on public and patient perspectives on sharing publicly-held health data with private industry for research and development. Our review question was: what are community attitudes towards the use of government administrative health data by private industry organisations for therapeutic development?MethodsWe developed two logic grids: first, used terms describing citizens or patients, big data, private health sector and views or perspectives, second, used terms describing big data, social licence and public interest. We conducted a systematic literature search using electronic databases; PubMed, Scopus, CINAHL, Web of Science. Searches were conducted using Google Advanced and Google Scholar to identify grey literatureResultsA total of 6,788 articles were screened based on title and abstract. Full text screening was conducted for 224 articles and a total of 33 publications were identified. Across all studies, support for sharing administrative health data with private sector organisations was low. Background knowledge and lack of trust that data use would lead to public benefit were the most important reasons for low level of support.ConclusionPolicymakers, data custodians and companies will need to establish robust safeguards including secure storage, anonymisation, monitoring and independent oversight, and institute and implement sanctions on misuse, if they are to secure legitimacy to share publicly-held health data with private industry for research and development.Registrationnone available.‘Contributions to the literature’Research shows governance for data sharing is challenging, particularly when private sector organisations are the recipients of public sector data. Globally jurisdictions have responded by instituting new regulations and laws related to data protection, data sharing and the associated risks.Bringing together research on ‘public attitudes towards the use of linked government administrative data by private sector organisations for therapeutic development’, this systematic review found that public support for sharing was low.These findings highlight key areas for policymakers, data custodians and companies to address before they can legitimately share publicly-held health data with private industry for research and development.