脊髓损伤(SCI)的研究和政策决定很少与SCI患者合作,使其相关性较低,适用,并由那些决定旨在支持的人使用。跨学科,共识方法已被推广为支持共享研究和基于政策的决策的可行解决方案。在本文中,我们描述了学术研究人员和安大略省SCI联盟之间的合作方法,非营利组织,SCI社区动员网络,共同开发和共同传播基于社区的共识活动。基于社区的共识练习包括两次修改后的Delphi调查和一次面对面的撤退。该伙伴关系与这项工作的目标是促进共同决策,以制定他们即将到来的战略计划。然后,我们采访了来自Delphi和面对面务虚会的合作伙伴和参与者,以讨论成功,挑战,以及从练习中吸取的教训。调查1已分发给安大略省SCI社区的2500多名成员,并收到374份回复(276份来自SCI患者)。调查2有118个答复,87来自SCI的人。静修有73名与会者,包括SCI患者,SCI患者的家人/朋友,临床医生,研究人员,和SCI社区和研究机构工作人员/志愿者。务虚会包括调查结果的介绍,临床医生/研究人员小组,和外部推动的工作组。合成了所有调查响应和撤退材料。使用合成的反馈,安大略省SCI联盟能够为安大略省SCI社区实施若干变更,包括更高质量的初级保健体验(减少等待时间,更方便的检查室),与安大略省政府一起制定伤口护理战略,以及一项宣传活动,以公开宣传导管和泌尿系统护理用品。从进行的五次采访中,关于成功的五个主题是共同构建的,挑战,和从练习中吸取的教训:(1)包容,多样性,Equity,和可访问性;(2)伙伴关系;(3)设计考虑;(4)沟通的透明度和清晰度;(5)可持续性。本社区案例研究的结果证明了在一个值得公平的群体之间进行社区层面共识练习的可行性,同时为如何确保未来的研究和基于政策的决策在不同知识用户之间共享提供了详细的指导。
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.