PARE0029 THE JOURNEY FROM PATIENT AND PUBLIC ENGAGEMENT (PPE) TO INVOLVEMENT: FACILITATING PATIENT PARTNER RESEARCH WORKSHOPS WITH A FOCUS ON FIBROFOG IN FIBROMYALGIA
Authors: S. Derham, M. Brooke
Journal: Annals of the Rheumatic Diseases (2020)

Background: The Bath Institute for Rheumatic Diseases (BIRD), a registered charity in the United Kingdom (UK), supports research, education and patient engagement for the benefit of people with rheumatic diseases. Event feedback from two Fibromyalgia Information Days showed patients valued the sessions and were keen to be involved in research. Fibrofog in fibromyalgia was identified by patients as one topic of interest. Objectives: To facilitate Patient Research Partner Workshops to generate research questions and inform the design of clinical research into fibrofog in fibromyalgia. Methods: Three Patient Research Partner Workshops, focusing on fibrofog in fibromyalgia, were run between January 2018 and April 2019. All were co-facilitated by a clinician, SD, and BIRD Patient and Public Engagement (PPE) lead,MB. Ethical approval was not required 1 . Patients were invited to participate by email. A Patient Partner Information Sheet accompanied the workshop invitation. Audio recordings of the discussions were made to aid data capture, following informed written consent by all workshop participants. Travel expenses were offered to all participants. Results: 25 (n=25) women with fibromyalgia attended the workshops. Workshop 1 (n= 5) explored, ‘What areas do you think we should research around fibrofog in fibromyalgia’? Patient partners felt research into fibrofog in fibromyalgia was needed to identify and validate symptoms, and to inform discussions with healthcare professionals. They also called for research into coping strategies to help with fibrofog symptoms. This reflected similar patient calls for research into fibrofog in fibromyalgia 2 . Workshop 2 (n=10) and Workshop 3 (n=9) explored ‘How do you think we should research fibrofog in fibromyalgia’? Both workshops identified a broad range of research questions and designs, reflecting individual experiences, knowledge and symptom severity. Suggested research questions included: How severe is fibrofog for each person? What triggers fibrofog? How does fibrofog affect daily tasks? How does fibrofog affect work? What do people with fibromyalgia, their partners, family members and healthcare professionals understand about fibrofog? Suggested data collection methods included interviews, focus groups and questionnaires. Use of online surveys or interviews had mixed responses. This reflected computer literacy skills and access to hardware. Discussions around recruitment of participants to future studies revealed a wealth of local knowledge including access to community venues and healthcare facilities, support groups and local networks. Participants were very satisfied with the workshops, finding them helpful, informative and thought provoking. All wanted to continue their involvement in research. Conclusion: Patient Research Partner Workshops are integral to the generation and delivery of clinical research into fibrofog in fibromyalgia. Research designs need to offer multiple methods of data collection to be as inclusive as possible. Next steps will be to formally recruit Patient Research Partners to co-develop a research grant application to explore fibrofog in fibromyalgia. References: [1]INVOLVE. Public involvement in research and research ethics committee review V.2 Southampton: INVOLVE/Health Research Authority; 2016 [Available from: https://www.invo.org.uk/wp-content/uploads/2016/05/HRA-INVOLVE-updated-statement-2016.pdf . [2]Fitzcharles, M.-A., Brachaniec, M., Cooper, L., Dubin, R., Flynn, T., Gerhold, K., Häuser, W., Cowan, K., Laupacis, A., Marleau, R., Milot, M., Szajcz-Keller, N., Sumpton, J., Walsh, Z. &amp; El-Gabalawy, H. 2017. A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals. Canadian Journal of Pain, 1, 137-147. Acknowledgments: This work was supported by the National Institute for Health research [ICA-PCAF-2018-01-078 to SD] Disclosure of Interests: Sandra Derham: None declared, Mel Brooke Grant/research support from: Sponsorship from Lilly to BIRD for the Patient and Public Engagement Programme, Sponsorship from Sanofi to BIRD for the Healthcare Professionals Education Programme.