OP0251-PARE Patient and Public Involvement in Design, Analysis and Reporting of A Public Priority Setting Exercise for Research in Osteoporosis

Abstract

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...

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

“…For each topic, a number of subthemes were identified (Table 1 ). Researchers worked with a patient research user group at Keele [ 14 ] to translate each subtheme into a questionnaire stem for the e-survey; ZP wrote an initial draft which the patient group subsequently edited, ensuring that each stem represented discussion in the focus group and was written in an understandable way [ 15 ]. The user group consisted of five existing members with long-term musculoskeletal conditions, three of whom had experience of advising a previous study regarding research priorities and three of whom had experience of osteoporosis and/or fracture (either personal experience or as a relative/spouse or carer).…”

Public priorities for osteoporosis and fracture research: results from a focus group study

“…A semi-structured topic guide was co-developed with public contributors [19]. The topic guide included questions about participants' experience of osteoporosis, including diagnosis, management and the influence of the disease upon their lives, what people thought was important in their management and what was missing or could be improved in relation to their care.…”