Division of General Internal Medicine, Data Science to Patient Value Initiative, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States.
One Colorado, Denver, Colorado, United States.
Appl Clin Inform. 2023 Mar;14(2):263-272. doi: 10.1055/s-0043-1763290. Epub 2023 Apr 5.
Access to credible and relevant health care information is an unmet need for the transgender and gender-diverse (TGD) community. This paper describes the community engagement methods and resulting community priorities as part of a codesign process for the development of a Transgender Health Information Resource (TGHIR) application.
A lesbian, gay, bisexual, transgender, and queer advocacy organization and an academic health sciences team partnered to establish a community advisory board (CAB) of TGD individuals, parents of TGD individuals, and clinicians with expertise in transgender health to inform the project. The analytic-deliberative model and group facilitation strategies based on Liberating Structures guided procedures. Affinity grouping was used to synthesize insights from CAB meeting notes regarding roles and perspectives on the design of the TGHIR application. We used the Patient Engagement in Research Scale (PEIRS) to evaluate CAB members' experience with the project.
The CAB emphasized the importance of designing the application with and for the TGD community, including prioritizing intersectionality and diversity. CAB engagement processes benefited from setting clear expectations, staying focused on goals, synchronous and asynchronous work, and appreciating CAB member expertise. TGHIR application scope and priorities included a single source to access relevant, credible health information, the ability to use the app discreetly, and preserving privacy (i.e., safe use). An out-of-scope CAB need was the ability to identify both culturally and clinically competent TGD health care providers. PEIRS results showed CAB members experienced moderate to high levels of meaningful engagement (M[standard deviation] = 84.7[12] out of 100).
A CAB model was useful for informing TGHIR application priority features. In-person and virtual methods were useful for engagement. The CAB continues to be engaged in application development, dissemination, and evaluation. The TGHIR application may complement, but will not replace, the need for both culturally and clinically competent health care for TGD people.
获取可信且相关的医疗保健信息是跨性别和性别多样化（TGD）群体未满足的需求。本文介绍了社区参与方法和由此产生的社区优先事项，作为开发跨性别健康信息资源（TGHIR）应用程序的共同设计过程的一部分。
一个女同性恋、男同性恋、双性恋、跨性别和酷儿倡导组织和一个学术健康科学团队合作，成立了一个由 TGD 个人、TGD 个人的父母以及在跨性别健康方面具有专业知识的临床医生组成的社区咨询委员会（CAB），为项目提供信息。基于解放结构的分析性审议模型和小组促进策略指导了程序。亲和分组用于综合 CAB 会议记录中关于设计 TGHIR 应用程序的角色和观点的见解。我们使用患者参与研究量表（PEIRS）评估 CAB 成员对项目的体验。
CAB 强调了与 TGD 社区一起设计应用程序的重要性，包括优先考虑交叉性和多样性。CAB 参与过程受益于设定明确的期望、专注于目标、同步和异步工作以及欣赏 CAB 成员的专业知识。TGHIR 应用程序的范围和优先事项包括访问相关、可信的健康信息的单一来源、能够秘密使用应用程序以及保护隐私（即安全使用）。CAB 未涵盖的范围是识别文化上和临床上都有能力的 TGD 医疗保健提供者的能力。PEIRS 结果表明，CAB 成员体验到了从中等到高水平的有意义的参与（M[标准差] = 84.7[12]，满分 100 分）。
CAB 模型对于告知 TGHIR 应用程序的优先功能非常有用。面对面和虚拟方法对于参与非常有用。CAB 继续参与应用程序的开发、传播和评估。TGHIR 应用程序可能会补充，但不会替代 TGD 人群对文化上和临床上有能力的医疗保健的需求。
