Background Patient 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.
Objectives To describe the role and impact of a Research User Group in co-designing priority setting methods for osteoporosis research.
Methods Three 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.
Results Five 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.
Conclusions Patient 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 impacted on focus group and e-survey design and the development of research strategy recommendations.
Acknowledgement We would like to thank the PPI team at Keele who helped to set up the RUG groups and the focus group participants and people who responded to the e-survey.
Disclosure of Interest None declared