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Exploring the Public Interest in and Social Licence for the Use of Linked Administrative Data in Therapeutic Development through a Scoping Review, Survey of Community Attitudes, and Hypothetical Case Studies

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The PHRN commissioned the Australian Centre for Health Engagement, Evidence and Values (ACHEEV) to develop a clearer understanding of the public interest in and social licence for the use of linked administrative government data by private companies in Australia.

Their survey of 2,537 people across Australia found between 52% and 58% of all respondents were willing to share their government health data with the private sector; lower proportions were in favour of sharing information to improve health services.

The conclusions and recommendations from the project were:

  1. Public support in Australia for sharing government health data with private industry is equivocal.
  2. Both government and the private sector will need to address the public’s lack of understanding and trust in the ways agencies collect, share, protect and use their personal data.
  3. Building a stronger support base will require a concerted effort that takes into account barriers to public engagement.

 

See Full and Summary Reports

 

See Peer-Reviewed Publications

Sharing Government Health Data with the Private Sector: Community Attitudes Survey

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

 

Project Status: Complete