Engagement of People With Lived Experience in Spinal Cord Injury to Address Innovation Priorities

Julia T. Ross, Vanessa K. Noonan, John Chernesky, James Hektner, Richard Peter, Spring Hawes, Andrew Forshner, Shweta Shekhar, Tathagata Ray, Arushi Raina, James J. Laskin

DOI: https://onlinelibrary.wiley.com/doi/10.1111/hex.70369

Introduction

The involvement of people with lived experience (PLEX) of spinal cord injury (SCI) is not common during medical innovation design, research and commercialization processes. To address the SCI community’s needs and priorities, companies developing SCI-related innovations must include individuals living with SCI in all steps of the process. This study explores the importance of the involvement of PLEX groups in identifying key themes and priorities for SCI-related devices and therapeutics.

Methods

Focus groups were held virtually as part of the Praxis Innovation Program. Members of the Praxis PLEX team facilitated 90-min discussions with PLEX participants. A discussion guide was used which included the following topics: existing challenges & solutions, initial product impressions, likelihood of use, acceptance by SCI community, reimbursement/payment challenges & solutions, and potential improvements. Researchers observed the focus groups and took contemporaneous notes. Following each focus group, a deidentified summary was synthesized using researchers’ notes, facilitator’s key messages, and an audio transcript. The summaries from all focus groups were analyzed and themes common across the focus groups were identified.

Results

Twenty-seven focus groups were conducted between 2020 and 2023, with an average of seven participants per session. Individuals from Canada, the United States, New Zealand, and Australia participated. Participants ranged in age from 21 to 73 years. 58% were male and 42% were female. Fourteen percent of participants had lived with SCI for less than 5 years, 17% for 6–10 years, 12% for 11–15 years, and 57% for greater than 16 years. Among participants, 59% were tetraplegic, while 41% were paraplegic. Six global themes emerged that reflected PLEX’s considerations for new technologies; purchase and use decisions were identified in 96% of the focus groups, purpose in 93%, design in 89%, communication in 85%, time factors in 81%, and adaptation considerations in 81%.

Conclusion

This study describes the results of using a systematic approach and framework for SCI PLEX focus groups during the research, design and commercialization process. The themes identified: purchase and use decisions, purpose, design, communication, time factors, and adaptation considerations, are important topics regarding SCI innovations. Future studies should focus on measuring the impact of patient/PLEX engagement by comparing the success of devices that successfully reach consumer market after collaboration with PLEX versus products that are developed independently.