ArticleHealth services insights2026
A Targeted Literature Review and Patient Focus Groups to Develop Recommendations for Reporting Patient-Reported Measures to Patients and Consumers in Clinical Quality Registries.
Article in Health services insights, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.