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Promoting community engagement in spinal cord injury research: a case example

Abstract

Community engagement is an important method of knowledge translation in spinal cord injury (SCI) research where researchers collaborate with people with lived experience, care partners, and other research users to improve the quality of research. This perspective article aims to promote community engagement in SCI research by describing useful resources for its implementation and providing an example project using the North American Spinal Cord Injury Consortium (NASCIC) process for such partnerships. Researchers from the Jefferson College of Rehabilitation Sciences’ (JCRS) Center for Outcomes and Measurement engaged NASCIC to create an advisory committee composed of four people living with SCI to make recommendations for the methods of a large-scale study to develop a clinical outcome assessment. The advisory committee made usable recommendations for enhancing recruitment methods and reducing burden and barriers to participation. The successful partnership between NASCIC and JCRS shows the feasibility and value of SCI community engagement in research.

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Fig. 1: Timeline of North American Spinal Cord Injury Consortium (NASCIC) Advisory Committee Activities.

Data availability

Structured conversation guides from the advisory committee meetings are available in Supplementary File 1 and data from the modified Stakeholder-Centric Engagement Evaluation are available upon request to the corresponding author.

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Acknowledgements

We would like to acknowledge that in this paper we use the term “community engagement” and not everyone involved in SCI research identifies with this term. Another similar term that is widely used is “consumer engagement.” However, the authors of this paper agreed upon and felt comfortable with the term “community engagement” for this specific manuscript. We thank Jenny Martínez for permission to use and adapt the Stakeholder-Centric Engagement Evaluation in this project, and Jennifer French for assisting with developing our proposal to NASCIC. We would also like to thank Daniel Graves, Lydia Navarro-Walker, Tina DeAngelis, and Namrata Grampurohit for providing feedback on the conversation guides for the advisory committee. Ernest B. Ofori served as a member of the advisory committee, and we acknowledge his contributions to the project. The JCRS COM provided support for the NASCIC advisory board, and the Craig H. Neilsen Foundation (grant #597640, PI: Mulcahey) provided grant support for the item pool development of the COA described in the paper. This project was completed in partial fulfillment for the Doctoral Degree in Occupational Therapy at Thomas Jefferson University, Philadelphia, Pennsylvania (OMB).

Funding

The Jefferson College of Rehabilitation Sciences’ Center for Outcomes and Measurement provided support for the NASCIC advisory board.

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Authors and Affiliations

Authors

Contributions

OMB: conceptualized project; wrote and revised proposal to NASCIC; organized and conducted all advisory meetings; summarized recommendations and suggestions from all advisory committee meetings; led development of manuscript. JB: served on advisory committee, led development and writing of manuscript. EM: served on advisory committee, assisted with writing manuscript. BR: served on advisory committee, assisted with writing manuscript. IB: coordinated advisory meetings, assisted with writing manuscript. RYK: assisted with project conceptualization; debriefed on recommendations and suggestions from advisory meetings; reviewed and provided feedback on manuscript. NG: assisted with project conceptualization; debriefed on recommendations and suggestions from advisory meetings; reviewed and provided feedback on manuscript. MJM: conceptualized project; assisted with writing and revising proposal to NASCIC; assisted with organization of advisory committee meetings; debriefed on recommendations and suggestions from advisory meetings; provided substantial feedback on drafts of manuscript.

Corresponding author

Correspondence to Nicole M. Gerhardt.

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The authors declare no competing interests.

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Biller, O.M., Biundo, J., Mitchell, E.SL. et al. Promoting community engagement in spinal cord injury research: a case example. Spinal Cord 61, 632–635 (2023). https://doi.org/10.1038/s41393-023-00926-x

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