Clinical Registry Governance Reference Group

At the request of the National Health Information Group (NHIG), the Australian Health Information Council (AHIC) developed a paper proposing an approach to work on a national governance role with respect to clinical registries. It was recommended that a reference group be formed with membership from AHIC and SIMC and other experts, to guide the development of a national approach to clinical registry governance.

The Statistical Information Management Committee (SIMC) had noted for some time the need for a high level structured framework for prioritising the development of registers, and had indicated that it would like to see a situation where all national registers are maintained in relationship to, and under the same governance arrangements as, existing National Minimum Data Sets.

Role of the Clinical Registry Governance Reference Group

The Clinical Registry Governance Reference Group will provide guidance to the AHIC Secretariat on the development of a report for AHIC and NHIG, which will inform the development of an agreed framework for a national approach to clinical registry governance. The framework will take account of the National Health Information Management Group’s Minimum Guidelines for Health Registers for Statistical and Research Purposes.

The objectives of the reference group will be to:
• Examine the feasibility of a national governance role in registry development;
• Establish an evaluation process for new registry proposals; and
• Explore the feasibility of developing national consistent data standards for clinical registers with the Health Data Standards Committee (HDSC) and the Statistical Information Management Committee (SIMC).

Membership

Membership of the group includes representatives of Australian registries, representatives of the AHIC, the SIMC, the Health Data Standards Committee, the Australian Council for Quality and Safety, and a consumer representative.

Professor Jeremy Chapman OAM, Clinical Professor, University of Sydney, Chairman Australian Bone Marrow Donor Registry
Professor Graeme Russ, Chair of Executive, Australia and New Zealand Dialysis and Transplant Registry
A/Professor Lyn March, Chair, Australian Rheumatology Association Database Scientific Advisory Committee
Dr Owen Williamson, Steering Committee for the Victorian State Trauma Registry
A/Professor Jonathan Craig, Head of Clinical Group of the Centre for Kidney Research
Dr Ric Marshall, Department of Human Services (Victoria)
Ms Sue Cornes, A/Executive Director, Health Information Branch, Queensland Health
Dr Janis Shaw, Director, Corporate Information Services, Department of Health and Community Services, Northern Territory
Professor Cliff Hughes AO, Chief Executive Officer, Clinical Excellence Commission
Ms Kathi Williams, National Manager, Australian Childhood Immunisation Register
Dr Graeme Harris, Chief Medical Advisor, Office of Devices, Blood and Tissues
Professor John Simes, Director NHMRC Clinical Trials Centre
Professor Bill Runciman, AHIC Representative
Ms Amy Zelmer, Consumer Representative
To contact the Clinical Registry Governance Reference Group contact Roberta Hogan at the AHIC Secretariat