Table2_A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network.docx

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.

脊髓损伤（Spinal cord injury, SCI）相关研究与政策制定极少与脊髓损伤群体开展合作，导致相关成果的相关性、适用性及目标受益群体的接受度均大幅降低。跨学科领域中，共识方法被视作支持共享式研究与政策决策的可行解决方案。本文阐述了学术研究者与安大略省脊髓损伤联盟（Ontario SCI Alliance）的合作模式——该联盟为非营利性脊髓损伤社群动员网络——双方共同开发并协同推广一项基于社群的共识研讨活动。该活动包含两轮改良德尔菲（Delphi）调查与一场线下闭门研讨会。本次合作的核心目标是通过本次活动推动共享决策，以制定该联盟即将发布的战略规划。随后，研究团队对参与德尔菲调查与线下闭门研讨会的合作方及参与者进行访谈，探讨本次活动的成功经验、现存挑战与可汲取的实践教训。第一轮调查面向安大略省脊髓损伤社群的2500余名成员发放，共回收374份有效问卷，其中276份来自脊髓损伤群体；第二轮调查回收118份有效问卷，其中87份来自脊髓损伤群体。本次闭门研讨会共有73名与会者，涵盖脊髓损伤群体成员、患者家属/亲友、临床医师、研究人员以及脊髓损伤社群与研究组织的工作人员/志愿者。研讨会环节包括调研结果汇报、临床/研究专家小组讨论，以及由外部机构引导的工作组研讨。所有调研问卷回复与研讨会材料均经过系统性整合。依托整合后的反馈意见，安大略省脊髓损伤联盟得以针对安大略省脊髓损伤社群推出多项改进举措：包括优化基础医疗服务体验（缩短等候时长、增设无障碍诊疗室）、与安大略省政府联合制定伤口护理策略，以及发起倡导活动以推动导管与泌尿护理用品纳入公共医保覆盖范围。本次共开展五场访谈，围绕本次活动的成功之处、挑战与经验教训共同提炼出五大核心主题：（1）包容性、多样性、公平性与可及性；（2）伙伴合作关系；（3）设计考量；（4）沟通的透明度与清晰度；（5）可持续性。本社区案例研究的结果证明，在应获公平保障的群体中开展社区层面的共识研讨活动具备可行性，同时为如何确保未来的研究与政策决策能在多元知识用户群体间实现共享提供了详细的实践指导。