Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

In: International journal of population data science: (IJPDS), Band 5, Heft 5

Abstract

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious.
Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers.
ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant's own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents.
Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.