Australian community views about sharing administrative data with private industry: Comparing findings from survey and deliberative studies

Ms Belinda Fabrianesi1

1Australian Centre For Health Engagement, Evidence and Values, University of Wollongong, Wollongong, Australia

Introduction:

Increased secondary use of government health data has led to greater interest in what the public think about data sharing, in particular the possibilities of sharing with private industry for research and development.  While international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with private industry.  There is limited research on this topic in Australia.

Objective and Approach:

We used an online survey (June 2019) to explore Australian public views about sharing government health data with private industry for research and therapeutic development.  Following the survey we conducted two Australian citizens’ juries (February 2020) to consider the charge: ‘Under what circumstances is it permissible for governments to share health data with private industry for research and development?’

Results:

Our national survey was completed by 2,537 members of the Australian public. We found that participants were ambivalent about sharing their data, with between 52% and 58% willing to share, depending on the specific purpose. Before the juries the 39 jurors were slightly more supportive (68-79%) than their survey counterparts. Following deliberation, willingness to share increased markedly (92-97%), with all bar one juror in support of sharing, provided a range of conditions was met.

Conclusion / implications:

Addressing public concern about sharing government health data with private industry is possible if there is clear and transparent public engagement focused on building community understanding and a willingness to respond to community expectations of public benefit, accountability and data security.

Key words:

Big data; Health data; Private sector; Public opinion; Deliberative methods; Consent; Trust;


Biography:

Bio to come.

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