While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15–17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a “critical turning point,” that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research. In the READYorNot™ Brain-Based Disabilities Study, our research team knew that for youth with disabilities, transitioning from children’s services to adult health services was difficult. So, we created an application to help disabled youth between 15 and 17 years old learn how to navigate the adult healthcare system. From the beginning of the study, researchers worked closely with youth and families in a Patient and Family Advisory Council (PFAC). This paper is initiated and co-authored by members of the PFAC and researchers. We wanted to think about and learn from a “critical turning point” when a young adult partner sent an email describing some real worries about working on this project. The young adult partner reported feeling “invisible”, “not heard” and felt that roles of members of the PFAC were not clear. This led to frustration and confusion—feelings shared by other members of the PFAC. This email led everyone on the project to think about working together differently. Researchers and PFAC members came together and agreed on new ways to partner: to offer clarity and flexibility around the roles of PFAC members, to value and appreciate partner contributions and to provide opportunities for all partners to contribute according to their interests and strengths. It was hard to realize that our team made mistakes, but we came together to learn and be an example for other research teams who face similar challenges.

中文翻译：

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引导有意义的参与：与青少年和家庭合作进行基于大脑的残疾研究的经验教训

虽然患者和家属参与研究已成为一种普遍做法，但有意义和真实的参与仍然是一个挑战。在 READYorNot™ 脑部残疾研究中，我们开发了 MyREADY Transition™ 脑部残疾应用程序，以促进教育、赋权和导航，帮助 15-17 岁脑部残疾青少年从儿科护理过渡到成人护理老的。我们的研究团队创建了患者和家庭咨询委员会 (PFAC)，让青少年、年轻人和家长照顾者成为我们多年、多阶段项目中的合作伙伴。这篇评论由我们的 PFAC 成员、研究人员、员工和实习生发起并共同撰写，描述了我们如何根据合作伙伴的关键反馈来纠正我们的合作伙伴关系。首先，我们重点介绍一位年轻成年 PFAC 成员的电子邮件推荐，这构成了一个“关键转折点”，揭示了 PFAC 成员之间期望不明确、缺乏欣赏和关系失衡的感觉。作为一个团队，我们反思了我们的合作经验并审查了 PFAC 活动的文件。这个过程使我们能够设定三个意图，以创建真实且有意义的参与的集体目标，并制定实现目标的路线：（1）围绕参与提供清晰度和灵活性； (2) 重视并认可合作伙伴及其贡献； (3) 提供选择并利用个人兴趣和优势。我们的主要建议包括：（1）制定路线并制定指导我们工作的计划； (2) 通过培养以患者为中心的研究能力来掌握诀窍； (3) 全力以赴，建立一个参与社区； (4) 进行路线修正，并做好应对风暴的准备，保持开放的心态，进行必要的反思、重新评估和调整。我们分享从我们的经验中吸取的重要建议和教训，以及文献中的例子，为与青少年、年轻人和家庭伙伴合作的多阶段研究项目提供指导。我们希望通过分享挑战和经验教训，我们可以帮助促进患者和家属参与研究。在 READYorNot™ 基于大脑的残疾研究中，我们的研究团队知道，对于残疾青少年来说，从儿童服务过渡到成人健康服务是很困难的。因此，我们创建了一个应用程序来帮助 15 至 17 岁的残疾青少年学习如何使用成人医疗保健系统。从研究开始，研究人员就与患者和家庭咨询委员会（PFAC）中的青少年和家庭密切合作。本文由 PFAC 成员和研究人员发起并共同撰写。当一位年轻的成年合作伙伴发送一封电子邮件描述了对该项目工作的一些真正担忧时，我们想思考并从中学习一个“关键转折点”。年轻的成年伴侣表示感觉“隐形”，“没有听说过”，并认为 PFAC 成员的角色不明确。这导致了 PFAC 其他成员的沮丧和困惑。这封电子邮件让项目中的每个人都开始思考以不同的方式合作。研究人员和 PFAC 成员齐聚一堂，商定了新的合作方式：围绕 PFAC 成员的角色提供明确性和灵活性，重视和赞赏合作伙伴的贡献，并为所有合作伙伴提供根据其兴趣和优势做出贡献的机会。很难意识到我们的团队犯了错误，但我们齐心协力学习，并为面临类似挑战的其他研究团队树立了榜样。