Monitoring performance and improving outcomes: characteristics and outputs of Australian clinical registries.

Abstract

Background: Clinical registries are long-term observational data collections relating to specific medical conditions, procedures, devices or health services. Objective: To assess current characteristics and outputs of clinical registries in Australia. Method: A cross-sectional survey design of Australian clinical registries listed on the Australian Commission on Safety and Quality in Health Care (ACSQHC) register as of 21 September 2023. Results: Of 107 clinical registries on the ACSQHC register that were contacted, 64 (60%) participated in the survey. Of these, 37 (58%) had been active for ⩾10 years, 38 (59%) were medical clinical registries and 35 (57%) received government funding. Clinical registry activities included research (92%), quality improvement (81%) and epidemiological monitoring (68%). Data were commonly patient-identifiable (64%) and collected by clinicians/staff (81%). A majority (55%) had real-time data available to contributing hospitals. Clinical registry outputs included providing data to researchers (97%), publications (83%), annual reports (69%) and site benchmarked reports (64%). Over half informed quality improvement activities (60%), monitored adherence to guidelines (59%) or informed policy or service planning (52%). Nearly half-supported clinical trials (49%), while one-fifth had integrated with government data frameworks. Conclusion: Australian clinical registries monitor health system performance across a breadth of clinical areas. A majority undertake regular public and hospital reporting and inform other quality improvement activities. Implications for health information management practice: Clinical registries interact with hospitals regarding their data collection and reporting activities. Health information management specialists have an important role in maximising registry data quality and therefore value to a wide variety of stakeholders.