Sharing administrative health data with private industry: A report on two citizens' juries

Abstract

Background There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. Methods Two citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: ‘Under what circumstances is it permissible for governments to share health data with private industry for research and development?’ Results All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation. Conclusion The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. Patient and Public Contribution The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations.

Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore

“…In another study, Australian citizens were willing to accept sharing their health data, including with private industry, providing the intended purpose was clearly of public benefit, sharing occurred responsibly in a framework of accountability and the data were securely held. In contrast to the previous study, the jurors did not explicitly reject profit generation (Street et al, 2021). While the methodologies for these studies would have varied slightly, it is likely that any differences in findings will reflect different cultural and social values.…”

“…In addition to the advisory panel, a group of Australian academics (AJN, SC, CD, ABM) with expertise and experience in deliberative research methodologies provided advice on the jury methodology and findings throughout. Our citizens' jury was based on methods and resources used in a similar Australian citizens' jury on data sharing with the private sector (Street et al, 2021).…”

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

“…Further research is needed to explore alternative ways to develop the social licence to share data with the private sector. For example, our own research using deliberative methods suggests that informed citizens may be willing to accept sharing their data, including with private industry, provided sharing is tightly regulated and in the public interest (58).…”

Health and public sector data sharing requires social licence negotiations

“…Existing research gives us useful entry points into some fundamentals we can anticipate. Firstly, private sector involvement is a fraught issue for Australians 18 . A review of research undertaken in the UK, US, Canada, Japan and Sweden identified widespread conditional support for health data access for research purposes – one of the common conditions being to regulate private profit 19 …”

“…Firstly, private sector involvement is a fraught issue for Australians. 18 A review of research undertaken in the UK, US, Canada, Japan and Sweden identified widespread conditional support for health data access for research purposes -one of the common conditions being to regulate private profit. 19 Secondly, decades of research into public trust of the regulation of technology demonstrates that publics often know technology entails fundamental uncertainties and mistrust actors who fail to acknowledge this or who claim certain knowledge of the future.…”