Enhancing participation in the collection of patient-reported outcome and experience measures: Insights and recommendations from a mixed-methods study

Background: Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) have become indispensable for quality assessment and monitoring of health systems and services. However, current participation rates in PREM and PROM surveys remain below 50% internationally, increasing the likelihood that quality issues remain unreported. This study aims to identify factors relevant for participating in PREM and PROM collection, quantify the willingness to share PREMs and PROMs across settings, and examine how potential personal and societal benefits can motivate participation in routine data collection. Methods: This mixed-methods study combined 15 problem-centered interviews with citizens, providers, and health data experts with representative survey data from the Austrian population aged 18-70 (n=1,260) collected in 2024. The Framework Method was used to identify and link factors considered in the decision-making process. Wilcoxon rank-sum tests were used to estimate differences in the willingness to share PREMs and PROMs across recipients and data collection purposes. Results: Relevant factors in the decision-making process were personal attitudes, data type, data recipient, collection mode, purpose and usefulness of data collection, and potential risks and benefits arising from sharing data. Survey participants were most willing to share PREMs with their general practitioner (GP) for quality improvement (81%) and least willing to share PROMs with private companies in exchange for using their products (12%). Conclusions: PREM and PROM collectors can motivate individuals to participate in surveys by clearly communicating personal and societal benefits at the point of data collection, supported by tangible examples of how improvements in care or system performance can be achieved by the recipient using the collected data. Nevertheless, perceived benefits need to be larger than perceived risks imposed by sharing health data.