Public priorities for osteoporosis and fracture research: results from a general population survey

SUMMARY: This is the first national study of public and patient research priorities in osteoporosis and fracture. We have identified new research areas of importance to members of the public, particularly ‘access to information from health professionals’. The findings are being incorporated into the research strategy of the National Osteoporosis Society. PURPOSE: This study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda. METHODS: An e-survey to identify topics for research was co-designed with patient representatives. A link to the e-survey was disseminated to supporters of the UK National Osteoporosis Society (NOS) in a monthly e-newsletter. Responders were asked to indicate their top priority for research across four topics (understanding and preventing osteoporosis, living with osteoporosis, treating osteoporosis and treating fractures) and their top three items within each topic. Descriptive statistics were used to describe demographics and item ranking. A latent class analysis was applied to identify a substantive number of clusters with different combinations of binary responses. RESULTS: One thousand one hundred eighty-eight (7.4%) respondents completed the e-survey. The top three items overall were ‘Having easy access to advice and information from health professionals’ (63.8%), ‘Understanding further the safety and benefit of osteoporosis drug treatments’ (49.9%) and ‘Identifying the condition early by screening’ (49.2%). Latent class analysis revealed distinct clusters of responses within each topic including primary care management and self-management. Those without a history of prior fracture or aged under 70 were more likely to rate items within the cluster of self-management as important (21.0 vs 12.9 and 19.8 vs 13.3%, respectively). CONCLUSION: This is the first study of public research priorities in osteoporosis and has identified new research areas of importance to members of the public including access to information. The findings are being incorporated into the research strategy of the National Osteoporosis Society. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s11657-017-0340-5) contains supplementary material, which is available to authorized users.