Submission Health innovation Smarter investment System reform and governance Consumer Data, Data linkage Health services

Maximising the Potential of Australian Clinical Quality Registries: A Submission in Response to the Draft National CQR Strategy

Research Australia 1 June 2019 2019 · Submission

In brief

Research Australia supported a national strategy for clinical quality registries, which track patient care and outcomes. It argued these registries should be treated as part of running the health system rather than as research, so they need not face ethics approval, and that governments should fund them more broadly.

Abstract

This submission responds to the draft National Clinical Quality Registry Strategy, which Research Australia broadly supports as a long-needed step in a field marked by pockets of excellence but patchy coverage. It notes that with Australian health expenditure of $181 billion in 2016–17, even small efficiency gains from evidence-based care driven by registry data would be significant. On clinician and patient partnerships, it recommends that patients help decide what data clinical quality registries (CQRs) collect, that data extend to patients’ interactions with other health staff, and that carers’ perspectives be recognised, citing research showing only 35% of patient-reported safety incidents match those identified by clinicians. It supports updating the national Framework into a Standard with accreditation, backed by incentives and an amended Clinical Governance Standard. Its central argument is that CQRs are primarily a quality improvement tool for the health system: their creation should not require Human Research Ethics Committee approval, inclusion of patient data should be treated as a primary rather than secondary purpose, CQR data should be governed as health data rather than research data, and a governance framework could extend Quality Assurance Activity provisions in the Health Insurance Act 1973. It also recommends standardised data access policies with clarity on who pays for data extraction, inclusion of CQRs in broader health data and interoperability reforms, and funding beyond the national prioritised registries, provided primarily by Commonwealth, state and territory governments.