Biller Olivia M, Biundo Jason, Mitchell Edward S-L, Richardson Bonnie, Burkhart Ian, Kim Rachel Y, Gerhardt Nicole M, Mulcahey M J
Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, PA, USA.
Janssen Pharmaceuticals, LLC, Raritan, NJ, USA.
Spinal Cord. 2023 Nov;61(11):632-635. doi: 10.1038/s41393-023-00926-x. Epub 2023 Aug 17.
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.
社区参与是脊髓损伤（SCI）研究中知识转化的重要方法，研究人员与有实际生活经验的人、护理伙伴及其他研究用户合作，以提高研究质量。这篇观点文章旨在通过描述实施社区参与的有用资源，并提供一个使用北美脊髓损伤协会（NASCIC）流程建立此类伙伴关系的示例项目，来促进SCI研究中的社区参与。杰斐逊康复科学学院（JCRS）结果与测量中心的研究人员邀请NASCIC成立了一个由四名脊髓损伤患者组成的咨询委员会，为一项大规模研究的方法提供建议，以制定临床结果评估。咨询委员会就加强招募方法以及减轻参与负担和障碍提出了可行的建议。NASCIC与JCRS之间的成功合作表明了SCI社区参与研究的可行性和价值。
