Alson Julianna G, Doll Kemi M, Hempstead Bridgette H, Barr Lisa, Lavallee Danielle C, Sage Liz, Moore Adrienne, Ramsey Scott D, Wolff Erika M, Comstock Bryan A, Monsell Sarah E, Katz Ronit, Gamble Charlotte R, Beavis Anna L, Watat Monika
Department of Obstetrics & Gynecology, University of Washington, Seattle, WA, USA.
Fred Hutchinson Cancer Research Center, Seattle, WA, USA.
Res Involv Engagem. 2025 Aug 8;11(1):95. doi: 10.1186/s40900-025-00760-w.
In cancer, lack of social support is associated with reduced survival. Peer support interventions have reduced social isolation among Black women with cancer but have yet to be adapted for Black people diagnosed with endometrial cancer - a growing, high-need demographic that has been historically excluded from community-engaged research. Our research team at the University of Washington addressed this gap by working within an established community partnership to develop a pragmatic randomized controlled trial to adapt and test social support interventions among Black women with EC - the Social Interventions for Support during Treatment of Endometrial Cancer and Recurrence (SISTER) Study. The goal of this commentary is to describe the stakeholder engagement practices used in the conceptualization and start-up of the SISTER Study.
The research team, including Black endometrial cancer survivors, developed a grant proposal, grounded in engagement values derived from the Patient-Centered Outcomes Research Institute and the Public Health Critical Race Praxis. The team implemented values-aligned stakeholder engagement activities, including the creation of an advisory board charter, structuring meetings and roles, incorporating stakeholder input into study material and protocols, establishing an external advisory board, and developing an engagement evaluation plan. Overall, we learned that it is possible to design and operationalize a community-engaged pragmatic randomized controlled trial in alignment with a racial equity social justice research methodology and patient-centered outcomes research engagement practices. We describe other lessons learned, including operational challenges to implementing our engagement practices and our approaches to addressing these challenges, and promising practices to replicate in future studies or partnerships.
The SISTER Study is an example of establishing principled methods of stakeholder engagement within an area of study and population that has been underrepresented in stakeholder-engaged research. The engagement practices within the SISTER Study can inform community-academic partnership practices in health equity research.
在癌症领域，缺乏社会支持与生存率降低相关。同伴支持干预措施减少了患癌黑人女性的社会孤立感，但尚未针对被诊断为子宫内膜癌的黑人进行调整——这是一个需求不断增长的高需求人群，在历史上一直被排除在社区参与研究之外。华盛顿大学的研究团队通过在既定的社区伙伴关系中开展工作来填补这一空白，以开展一项务实的随机对照试验，以调整和测试针对患有子宫内膜癌的黑人女性的社会支持干预措施——子宫内膜癌治疗和复发期间社会支持干预研究（SISTER研究）。本评论的目的是描述SISTER研究概念化和启动过程中使用的利益相关者参与实践。
包括黑人子宫内膜癌幸存者在内的研究团队，基于患者为中心的结果研究所和公共卫生批判种族实践所衍生的参与价值观，制定了一份拨款提案。该团队开展了符合价值观的利益相关者参与活动，包括制定咨询委员会章程、安排会议和角色、将利益相关者的意见纳入研究材料和方案、设立外部咨询委员会以及制定参与评估计划。总体而言，我们了解到，有可能按照种族平等社会正义研究方法和以患者为中心的结果研究参与实践，设计并实施一项社区参与的务实随机对照试验。我们描述了其他经验教训，包括实施参与实践的操作挑战以及我们应对这些挑战的方法，以及未来研究或伙伴关系中可复制的良好实践。
SISTER研究是在利益相关者参与研究中代表性不足的研究领域和人群中建立有原则的利益相关者参与方法的一个例子。SISTER研究中的参与实践可为健康公平研究中的社区 - 学术伙伴关系实践提供参考。
