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Clinical registries: the urgent need to address ethical hurdles

Sue M Evans, Bebe Loff and Peter A Cameron
Med J Aust 2013; 198 (3): . || doi: 10.5694/mja12.10648
Published online: 18 February 2013

Time to make appropriate data collection more efficient to drive improvements in quality of care

Australia is committed to improving the measurement of its delivery of health services in order to improve quality and safety of care and increase transparency for consumers.1 The Australian Commission on Safety and Quality in Health Care, established as an independent statutory authority in June 2011, has responsibility for leading this work. On its program is the drafting of national arrangements for clinical registries to monitor quality of care.2 Clinical registries synthesise patient treatment and outcome data, and report back to clinicians and contributing hospitals to allow outcomes and patterns of practice to be benchmarked (after risk adjustment) against other Australian and international units.


  • School of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC.


Correspondence: sue.evans@monash.edu

Acknowledgements: 

Sue Evans is supported by a Cancer Australia Priority-driven Collaborative Cancer Research Scheme grant (ID 1010384).

Competing interests:

No relevant disclosures.

  • 1. National Health and Hospitals Reform Commission. A healthier future for all Australians: final report June 2009. Canberra: Commonwealth of Australia, 2009. http://www.health.gov.au/internet/nhhrc/publishing.nsf/content/nhhrc-report (accessed May 2012).
  • 2. Australian Commission on Safety and Quality in Health Care. National arrangements for clinical quality registries. http://www.safetyandquality.gov.au/our-work/information-strategy/clinical-quality-registries (accessed Aug 2012).
  • 3. Evans SM, Bohensky M, Cameron PA, McNeil J. A survey of Australian clinical registries: can quality of care be measured? Intern Med J 2011; 41: 42-48.
  • 4. Swedish Association of Local Authorities and Regions. National healthcare quality registries in Sweden. Stockholm: SALAR, 2007. http://www.kvalitetsregister.se/om_kvalitetsregister/quality_registries (accessed Jan 2013).
  • 5. Bufalino VJ, Masoudi FA, Stranne SK, et al. The American Heart Association’s recommendations for expanding the applications of existing and future clinical registries: a policy statement from the American Heart Association. Circulation 2011; 123: 2167-2179.
  • 6. Larsson S, Lawyer P, Garellick G, et al. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care’s value. Health Aff (Millwood) 2012; 31: 220-227.
  • 7. Mitchell R, Watson WL, Curtis K, et al. Difficulties in establishing long-term trauma outcomes data collections. Could trauma outcomes be routinely monitored in New South Wales, Australia: piloting a 3 month follow-up? Injury 2012; 43: 96-102.
  • 8. Graves SE, Davidson D, Ingerson L, et al. The Australian Orthopaedic Association National Joint Replacement Registry. Med J Aust 2004; 180 (5 Suppl): S31-S34.
  • 9. Cameron PA, Gabbe BJ, Cooper DJ, et al. A statewide system of trauma care in Victoria: effects on patient survival. Med J Aust 2008; 189: 546-550. <MJA full text>
  • 10. Clark AM, Findlay IN. Attaining adequate consent for the use of electronic patient records: an opt-out strategy to reconcile individuals’ rights and public benefit. Public Health 2005; 119: 1003-1010.
  • 11. National Health and Medical Research Council; Australian Research Council; Australian Vice-Chancellor’s Committee. National statement on ethical conduct in human research. http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e72.pdf (accessed Aug 2012).
  • 12. Commonwealth Government. National health information agreement between the health authorities of the states and territories of Australia and the Australian Institute of Health and Welfare and Australian Commission on Safety and Quality in Health Care and the Commonwealth of Australia. http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737422838 (accessed Aug 2012).
  • 13. Evans SM, Scott IA, Johnson NP, et al. Development of clinical-quality registries in Australia: the way forward. Med J Aust 2011; 194: 360-363. http://www.mja.com.au/journal/2011/194/7/development-clinical-quality-registries-australia-way-forward
  • 14. Australian Commission on Safety and Quality in Health Care. Operating principles and technical standards for Australian clinical quality registries. 2008. http://www.crepatientsafety.org.au/registries/operating_principals_technical_standards_nov08.pdf (accessed Jan 2013).

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