The role of trust in sharing patient-reported outcome measures for research: a mixed-methods study

Abstract Background Trust is considered a fundamental element in the success of the European Health Data Space. High trust in data-collecting institutions increases willingness to allow secondary use of health data, but it's unclear if this extends to sharing patient-reported outcome measures (PROMs) for research. This study evaluates the role of trust in the willingness to share PROMs for research. Methods This exploratory 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 on qualitative data to identify factors that influence the willingness to share PROMs with social health insurances (SHIs), universities, and pharmaceutical companies (PCs) for research. Based on these factors, ordinal regressions were modelled on survey data. Results Qualitative results suggest that the decision to share PROMs is guided by trust in the recipient and knowledge of data use. This mechanism was also identified in the regressions, which demonstrated higher likelihood of sharing PROMs among individuals who trust SHIs (OR = 3.50, 95%CI: 2.26-5.47, p < 0.001), universities (8.16, 4.98-13.76, p < 0.001), and PCs (8.84,5.65-14.03,p<0.001). Women were less willing to share PROMs with SHIs (0.64,0.47-0.86,p=0.004), while good knowledge about health data (3.478,1.41-9.00,p=0.008) and trust in the government (1.79,1.15-2.29,p=0.01) were facilitating factors. Presence of chronic conditions increased the likelihood of sharing PROMs with PCs (1.66,1.02-2.71,p=0.042). Discussion Trust in data recipients is a key factor in the willingness to share PROMs for research. Increasing trust and knowledge about health data, for example by disseminating research results and demonstrating how data is used for care improvements, could enhance participation in PROMs collection for research. Key messages • Trust in data recipients is a key factor in the willingness to share patient-reported outcome measures (PROMs) for research. • Improving trust and knowledge about health data by reporting on data usage for care improvements could enhance PROMs collection.