SummaryThis 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.PurposeThis study aimed to prioritise, with patients and public members, research topics for the osteoporosis research agenda.MethodsAn 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.ResultsOne 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).ConclusionThis 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 materialThe online version of this article (doi:10.1007/s11657-017-0340-5) contains supplementary material, which is available to authorized users.

Four focus groups were conducted with members of the public to identify important areas for future osteoporosis research. Participants identified priorities to increase public awareness of osteoporosis, reduce delays in diagnosis, improve communication between healthcare providers and to improve follow-up and information provision about causes of osteoporosis, medication harms and prognosis. Purpose Patients and the public must be involved in setting research agendas to ensure relevant and impactful questions are prioritised. This study aimed to understand what people living with osteoporosis and fragility fractures felt was important to research, to inform the content of a national survey on research priorities in this area. Methods Focus groups were conducted with members of the public with experience of osteoporosis or fragility fractures. The topic guide was co-developed with a patient and public involvement research user group, and explored participants' experiences of osteoporosis including diagnosis, management and effect upon their lives, what aspects of their ongoing care was most important to them and what about their care or condition could be improved. Focus groups were audio-recorded, transcribed and analysed thematically. Results A total of twenty-three participants were recruited to four focus groups. Analysis identified two main themes: challenges in living with osteoporosis and healthcare services for osteoporosis. Information needs was a further cross-cutting theme. Participants called for increased public awareness of osteoporosis and wanted healthcare services to address conflicting messages about diet, exercise and medication. Participants described long delays in diagnosis, poor communication between primary and secondary care and the need for structured follow-up as important areas for future research to address. Conclusion The findings from this study provide an understanding of research priorities from the perspective of patients and the public, have informed the content of a national survey and have implications for patient education, health services research and policy.

BackgroundPatient and public involvement (PPI) in identifying topics for research ensures relevant, impactful research questions and is expected by research funders. We have undertaken a two-stage national priority setting exercise to identify public views on research priorities in osteoporosis. Four focus groups were undertaken with members of the National Osteoporosis Society (NOS) and a research cohort of people who had experienced fracture. A national e-survey was sent to members of the NOS. PPI was embedded throughout to inform study design, analysis and reporting.ObjectivesTo describe the role and impact of a Research User Group in co-designing priority setting methods for osteoporosis research.MethodsThree face-to-face advisory group meetings were held with members of the Research Institute's Research User Group (RUG). All members have bone and muscle pain. Meeting 1 occurred before the focus groups. A draft topic guide was discussed. Meeting 2 occurred after all focus groups were completed and before the e-survey went live. Before this meeting researchers undertook some analysis of focus group data to identify specific research questions or uncertainties about treatments and produced a draft e-survey. Each section and question was discussed with the RUG alongside relevant data from the focus groups to clarify concepts and wording. Meeting 3 focussed on e-survey results and co-design of recommendations on research priorities.ResultsFive RUG members participated. In meeting 1 RUG members advised on general topics to include in the focus group discussion and the order of questions to be asked. The group had innovative ideas about how best to ask participants to prioritise topics discussed and suggested using “post-it” notes which the researchers subsequently implemented. In meeting 2 researchers presented how emerging themes from the focus groups could be turned into questions for the e-survey. Some themes were felt to be “straightforward”, and for these RUG members advised on question wording. Some themes were less well crystallised (e.g. support, confidence), and for these, the RUG members interpreted meaning from quotes. Discussions led to clarity about what the question should be about and wording amended. The RUG identified overlap between questions and the need to simplify the introduction to the e-survey. Researchers redrafted and re-circulated the survey. RUG members fed back further comments by email, particularly regarding the order of presented questions and suggesting reordering in line with patient experiences. This meant moving the questions about diagnosis to an earlier part of the questionnaire. The final meeting was held after the e-survey closed. Summary results from the e-survey were presented and RUG members discussed how results should be presented in a final report.ConclusionsPatient and public involvement was integral to the design and analysis of this UK osteoporosis research priority setting exercise at three key points. This iterative process enabled active involvement throughout and...

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