Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
Health Expect. 2024 Dec;27(6):e70113. doi: 10.1111/hex.70113.
Patient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes. A well-developed ToR promotes a structured, inclusive, and respectful process.
Using an integrated knowledge translation (iKT) approach, we established a panel of youth, caregivers, healthcare providers, and healthcare leaders/decision-makers. Through collaborative discussions, we incorporated key elements into the ToR, including values, roles, decision-making processes, and recognition of contributions.
To promote effective engagement the ToR included sections to encourage open, transparent and vulnerable dialogue, evaluation, and accommodations for disabilities. The ToR draft was reviewed and refined by panel members for clarity. Regular reviews and updates will keep the ToR a living document and adaptable to the evolving engagement process.
The implementation of our ToR is designed to foster inclusivity, mutual respect, and accountability, avoiding tokenistic partnership, enriching the experience for patients and researchers alike, and ultimately enhancing research quality.
患者参与研究旨在促进有意义的合作，将患者的经验融入研究过程。本文描述了制定一份术语表（ToR）以支持这些有意义的合作。虽然参与可以改善数据收集和赋权，但无效的参与可能会导致负面结果。一个精心制定的 ToR 可以促进一个结构化、包容和尊重的过程。
我们使用综合知识转化（iKT）方法，成立了一个由年轻人、照顾者、医疗保健提供者以及医疗保健领导者/决策者组成的小组。通过协作讨论，我们将关键要素纳入了 ToR，包括价值观、角色、决策过程以及对贡献的认可。
为了促进有效的参与，ToR 包括鼓励开放、透明和脆弱对话、评估以及残疾适应的部分。ToR 草案由小组成员进行了审查和修订，以确保清晰明了。定期审查和更新将使 ToR 成为一份有活力的文件，并能够适应不断发展的参与过程。
我们的 ToR 的实施旨在促进包容性、相互尊重和问责制，避免象征性的合作，丰富患者和研究人员的体验，并最终提高研究质量。
