Perspectives of consumer involvement in pre-clinical musculoskeletal research: a cross-sectional survey of consumers and community members
Megan H Ross, Camille Maeva Thomas, Bec Jenkinson, Emmah Doig, Christopher B Little, Annette (Annie) McPherson, Christine Beanland, Paul Hodges, , Shireen Lamande, Zsolt Balogh, Ranjeny Thomas, Ashvin Thambyah, Elizabeth Clarke, Daniel Cury Ribeiro, Natalie Sims, Sean YanAbstract
Objectives
To examine how consumers are involved in pre-clinical musculoskeletal research and explore their perspectives on involvement.
Methods
A cross-sectional online survey was conducted to explore consumer involvement in pre-clinical musculoskeletal research and perspectives on involvement. Eligible participants were individuals with lived experience of musculoskeletal conditions or their carers, recruited via consumer networks in Australia and New Zealand. Quantitative and qualitative data were collected using structured and open-ended questions. Descriptive statistics and inductive content analysis were used to analyse responses.
Results
166 participants (n = 150 consumers, n = 16 carers) with lived experience of a musculoskeletal condition completed the survey. Forty percent of participants had prior involvement in pre-clinical research, primarily as study participants. Most consumers (77%) believed their involvement should be a requirement and identified clear expectations (96%), training (67%), reimbursement (61%) and buddying with researchers (60%) as essential supports. Almost one third (32%) reported that the support required would vary depending on their role. Consumers rated their input as very important for identifying research priorities (64%) and ensuring research is clinically relevant (59%). Almost 40% did not agree that they lacked necessary training to contribute to pre-clinical research, and showed little interest in applying for research funding (50%), recruiting participants (38%) or writing/reviewing publications (36%). Those with prior research experience reported greater confidence in their skills and their input’s relevance.
Conclusion
Consumers are willing and perceive that they can contribute meaningfully to pre-clinical research when appropriately supported. Aligning involvement opportunities with consumer interests and providing tailored support ensures impactful partnerships.