The use of patient-reported outcome and experience measures for health policy purposes: A scoping review in oncology

The systematic use of patient-reported measures (PRMs) [i.e., patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs)] is advocated as an effective way to improve care practices. However, whether PRMs can lead to the performance assessment of healthcare organisations (HCOs) through valid quality indicators (QIs) for national purposes (i.e., public reporting and paying for performance) is open to debate. This study undertakes a scoping review to examine the use of PRMs as QIs for health policy purposes and to identify the challenges faced in the emblematic case of oncology. According to PRISMA guidelines, published papers, websites and reports published by national and international initiatives were analysed using five online databases (Web of Science, Scopus, PubMed, JSTOR and Google Advanced Search), and then studied using the same keywords. We selected 61 articles and 19 websites/reports and identified 29 PREMs and 48 PROMs from 14 countries and two international initiatives that routinely used them as QIs for HCOs’ comparisons. Four types of barriers to this specific use were identified relating to the definition of a standard set, scientific soundness, data collection, and the actionability of such measures. Despite current developments, different barriers still must be overcome before PRMs can be used for health policy purposes in oncology. Future research is needed to ensure that valid QIs related to PRMs are applied at a national level.