Whose Perspectives Should Shape Progress? Community-Driven Recommendations for Person-Centered Upper Limb Difference Research

Objective Research on upper limb prostheses often prioritizes technological advancement without integrating the lived experiences of people with upper limb difference into research goals and evaluation. A person-centered approach is needed to better align engineering efforts with the perspectives of those who are personally affected by the outcomes. Methods We formed a team of seven individuals with upper limb difference and three research professionals to discuss pathways towards meaningful progress in prosthetics research. Conversations included topics like identity, societal views on disability, prosthesis usage patterns and preferences, and preferred terminology. Results Community members emphasized the need for researchers to re-evaluate their assumptions about the true role of prostheses for people with upper limb difference. Using a collaborative, consensus-building process, we created four recommendations: 1) Focus research and translational priorities on supporting personal goals and abilities, not eliminating impairment, 2) The pursuit of long-term research and translational goals should be balanced with addressing more immediate community needs, 3) Research and clinical outcomes should be person-centered, not prosthesis-centered, and 4) Respect the unseen social-emotional impacts of living with upper limb difference. Conclusion These recommendations can support equitable, person-centered research aligned with the priorities and lived experiences of people with upper limb difference.