A Targeted Literature Review and Patient Focus Groups to Develop Recommendations for Reporting Patient-Reported Measures to Patients and Consumers in Clinical Quality Registries

Background Clinal Quality Registries (CQRs) often collect patient reported measures (PRMs) for the purpose of reporting these data to clinicians. By incorporating PRM data, CQRs and participating healthcare providers can gain a more comprehensive understanding of patient experiences and outcomes to inform both individual care and broader health service improvements. However, many CQRs do not routinely provide patient access to PRM data or report these data back to patients. Objectives To understand how PRMs captured in CQRs should be reported to patients, and to develop a guide for reporting registry-collected PRMs to this population. Methods First, a targeted literature review was undertaken, involving a structured search of the scientific literature to identify evidence on patient preferences regarding the reporting of PRMs. Data were extracted and managed using Microsoft Excel. Second, focus group discussions were conducted with 15 registry consumers to explore their PRM information needs, and preferences for how registry-collected PRM data should be reported. Results The literature review identified 23 studies and found that many patients preferred to receive their own PRM data. Access to these data helped them better understand their health, support discussions with clinicians, and feel more empowered in their care. Graphical displays and lay summaries were most preferred. Focus group participants also valued receiving aggregate reports and being informed about how their data were used and recommended clear terminology and accessible formats for diverse audiences. Conclusion Based on the findings from this study, we developed a guide with practical resources, examples, and guidance for CQRs on how to engage with patients in the PRMs’ reporting process. The goal of this document is to support transparency in PRMs reporting, patient engagement with CQRs, and the real-world use of this data for improving healthcare quality.