Maximising the patient voice in health care: A scoping review of secondary use of routinely collected qualitative open-ended patient reported experience measure comments

INTRODUCTION: Routinely collected patient reported experience measure (PREM) surveys capture patients' experience across many countries and care settings. Secondary use of open-ended PREM comments is not common practice, however with increasing volume and scope being captured, this should be investigated. We examine how routinely collected open-ended PREM comments are used in research for secondary uses and synthesise considerations. METHODS: Using the JBI approach and PRISMA-ScR guideline, we searched four academic databases for peer-reviewed English-language studies (2010-2024) that used routinely collected open-ended PREM comments to answer questions focused on a specific person, place, time or perspective beyond the broad intent of the original survey. We summarised study characteristics, categories and methods of secondary use and performed a descriptive analysis of study authors' considerations for secondary use of this data. RESULTS: We identified 2,200 unique articles and conducted full-text review of 206 articles, yielding 25 included studies. Studies most frequently used open-ended PREM comments to investigate elements of care (32%, n = 8), time periods (24%, n = 6), examine types of care (20%, n = 5), or treatments (20%, n = 5). Researchers used manual analysis approaches (56%, n = 14), applied sentiment analysis and thematic analysis (each 48%, n = 12). A key strength in the secondary use of open-ended PREM comments is that it reflects what is important to patients' care experiences; while a limitation is the potential bias inherent in survey data (e.g. non-response bias). CONCLUSION: Secondary use of open-ended PREM comments for research is growing, but it is not yet widely used. Using these already collected data for research eliminates the time and cost of additional data collection and incorporates patient voice into research. A formal framework for secondary use of open-ended PREM comments will support incorporating these data into research. Secondary use of PREMs comments could enable more insightful, efficient research and maximise the patient voice in healthcare.