Development of a Best Practice Guide to Optimise the Reporting of Patient Reported Measures by Clinical Quality Registries for Quality Improvement Purposes

Background: Clinical quality registries (CQRs) systematically monitor the quality of healthcare by routinely collecting and reporting health-related information. The collection of patient reported measures (PRMs) by CQRs provides a personal perspective on the expectations and impacts of treatment. Reporting of CQR-collected PRMs for quality improvement (QI) is highly variable. Objectives: To develop a best practice guide (BPG) for CQRs, clinicians and health services to support high-quality and transparent reporting of PRM data for QI purposes. Methods: The project comprised four stages. The first sought to describe how PRMs were reported for QI purposes in Australia and internationally. The second stage included seven focus groups with 20 Australian CQRs to identify existing practices, issues and impacts regarding PRMs reporting. During stage 3, findings from the literature and focus groups were used to draft a preliminary BPG. Finally, expert workshops involving PRMs experts, consumers, clinicians and representatives from CQRs were convened to refine a preliminary BPG. Results: We identified 61 international and 45 Australian CQRs that reported PRMs for QI purposes. PRMs were used for shared decision-making in clinical encounters, for developing clinical decision aids, to revise treatment guidelines and to monitor complications after hospital discharge. Several themes emerged from the focus groups. These included: purpose and context, funding and resource requirements, consumer involvement, clinician training, instrument selection and administration, outlier identification, visualisation and interpretation of the data. A preliminary BPG was refined during the workshop discussions. Conclusion: An increasing number of CQRs use PRMs to enhance QI reporting, however there are no published guidelines currently to support this. Through identifying existing practices, methods and techniques that CQRs use to report PRMs, we developed a practical guideline to support CQRs and standardise their PRMs reporting for QI purposes, with the overarching goal of optimising the value of PRM data within CQRs.