Assessing government principles for running a clinical quality registry
A clinical quality registry is an organisation which collects health-related information on patients with a particular illness (e.g. stroke); treated by a particular procedure, drug or device (e.g. joint replacement); or managed within a particular healthcare resource (e.g. intensive care unit) and uses the information to assess and improve the safety and quality of health care received by these patients.
In 2008, the Australian Commission on Safety and Quality in Health Care drafted a document outlining a series of recommendations for the structure, governance and management of a clinical quality registry (operating principles), as well as a list of standards that should be followed in developing the technical aspects of a registry (technical standards). The National Breast Cancer Audit (NBCA) was one of six national registries chosen to test these principles and standards in a working registry environment and provide feedback on:
- whether the principles were relevant to the NBCA (relevance)
- whether it was possible to apply the principles to the NBCA (feasibility)
- the difficulty involved in applying the principles
- the effect of applying the principles to the NBCA (impact).
All but three operating principles were judged relevant for clinical quality registries and feasible to apply; however, applying these principles may be more difficult and expensive for established registries. By the end of 2009, the NBCA met 27 of the 42 operating principles, with a further three principles partly met. Some principles could not be applied at the time as they would involve substantial changes to the way the audit runs, would be contrary to the purpose of the audit or were limited by factors such as current funding levels.
An IT firm was contracted to review the technical standards and concluded that the standards listed as 'required' could be implemented with the next website upgrade of the NBCA. Any other standards listed were considered irrelevant or would require substantial development to be implemented acceptably.
In the final report to the Commission, the NBCA recommended that the operating principles and technical standards document be more concise, specifically regarding what a registry must do to have complied with the principles, with a more user-friendly summary of the technical standards for those without a strong IT background. The benefits of meeting each principle and technical standard should be made clear so registries can determine whether the time and expense of implementation is worthwhile.
The revised operating principles and technical standards document, which can be accessed through the Commission's website, takes into account all comments, issues and experiences from the six registries involved in the testing. This document will have a significant impact on quality of care in Australia as more audits and registries use it as a guide.
Ogilvy, M. Kollias, J. Operating principles for running a clinical quality registry: are they feasible? ANZ Journal of Surgery 2012 Nov;82(11):832-7. PubMed ID: 22943307