The Menzies Foundation hosted a workshop on 16 August 2013 to discuss ways that publicly-funded data can be made more available for public-benefit research. This workshop was attended by public figures and community representatives, senior public servants, members of parliament, researchers and media. 

Background

Themes of the workshop

Publicly-funded data, held in trust by government agencies, should be made more readily available for public-benefit research

  • Public benefit research will improve the knowledge-base, as well as the effectiveness, productivity and accountability of health and other agencies of government, without harm to privacy.
  • With public support, this will require
    – A modest investment of new resources
    – An enabling response from government agencies
    – A streamlining of approval processes
  • Government is already responding (eg APS Big Data Strategy)
  • Today's workshop will review evidence of public support for data use, and explain how health can benefit from the modest changes summarised in background documents and in later presentations.

Some background to the issues discussed can be found at: http://blogs.crikey.com.au/croakey/2013/07/28/are-governments-locking-up-information-that-could-be-used-to-improve-our-health/

Workshop Papers

W01 Mathews, J. pdfPublic support of data linkage for better health753.54 KB           

W02 Smith, M. pdfData linkage: project approval and data access1.18 MB

W03 Jorm, L. pdfExpanding opportunities for data linkage1.2 MB      

W04 Roder, D. pdfData Linkage Opportunities and Requirements in Australia – NHMRC and Personal Perspectives874.26 KB     

W05 Allen, J. pdfPublic support of data linkage for better health: Legal and ethical issues430.92 KB

W06 Thomson, C. pdfEthical review & approval of data linkage research projects236.36 KB

W07 Whop, L. pdfNational Indigenous Cervical Screening Project: a data linkage study412.43 KB

W08 Xafis, V. pdfCommunity attitudes to data linkage research41.82 KB

W09 Bennett, C. pdfData Linkage for Better Health: A Consumer Perspective401.08 KB

W10 Pearson, S. pdfPharmaceutical Benefits Scheme835.43 KB


pdfA discussion paper based on the proceedings of a Menzies Foundation Workshop, 16 August, 2013544.54 KB

 

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