Francisco Rita, Pascoal Carlota, Granjo Pedro, de Freitas Claudia, Videira Paula A, Dos Reis Ferreira Vanessa
Associate Laboratory i4HB - Institute for Health and Bioeconomy, NOVA School of Science and Technology, Universidade NOVA de Lisboa, Caparica, Portugal.
UCIBIO- Applied Molecular Biosciences Unit, Department of Life Sciences, NOVA School of Science and Technology, Universidade NOVA de Lisboa, Caparica, Portugal.
Res Involv Engagem. 2024 Oct 23;10(1):107. doi: 10.1186/s40900-024-00641-8.
Patient and public co-creation and involvement in health initiatives have been witnessing great expansion in recent years. From healthcare to research settings, collaborative approaches are becoming increasingly prevalent and diverse, especially in the field of rare diseases which faces complex challenges. Conference development and implementation, however, have been primarily guided by passive, information-sharing models. There is a need for conferences to evolve towards more inclusive, interactive, collaborative, and problem-solving platforms. Here, we aimed to report on a pioneer model, emphasizing a community partnership approach to conference co-creation that takes the World Conference on Congenital Glycosylation Disorders (CDG) as an exemplary case.
To answer the need to overcome the lack of access to high-quality information which limits CDG diagnosis, research and treatment options, the World CDG Organization has been refining a community-centric model for conference co-creation. Focusing on the 5th edition of the conference, data on stakeholders' preferences was collected using an online survey and a poll to define the conference agenda, guide its development and select optimal dates for an all-stakeholder inclusive, relevant and participatory event.
We describe the complexities of the community-centric conference co-creation model, detailing its refined methodology and the outcomes achieved. The model is grounded on a participative approach to promote people-centered research and care for CDG patients. The involvement of the public in the conference co-creation and in participatory methods allowed the generation of knowledge on community needs and preferences.
This paper describes a reliable, highly adaptable conference co-creation model that fosters community-building, disseminates understandable information, and serves as a borderless platform to incentivize multiple stakeholder collaborations towards CDG research and drug development. We argue this is a reproducible model that can be endorsed and more widely adopted by other disease communities and events.
近年来，患者和公众共同参与并投身健康倡议活动的情况日益普遍。从医疗保健到研究领域，协作方法越来越普遍且多样，尤其是在面临复杂挑战的罕见病领域。然而，会议的开展和实施主要遵循被动的信息共享模式。会议需要朝着更具包容性、互动性、协作性和解决问题能力的平台发展。在此，我们旨在报告一种先锋模式，该模式强调以社区伙伴关系为导向的会议共创方式，并以先天性糖基化障碍世界会议（CDG）为例进行说明。
为满足克服获取高质量信息不足这一需求（该不足限制了CDG的诊断、研究和治疗选择），世界CDG组织一直在完善以社区为中心的会议共创模式。以该会议的第五届为重点，通过在线调查和投票收集利益相关者的偏好数据，以确定会议议程、指导会议开展并为所有利益相关者参与的、相关且具有参与性的活动选择最佳日期。
我们描述了以社区为中心的会议共创模式的复杂性，详细阐述了其完善的方法和取得的成果。该模式基于一种参与式方法，以促进以患者为中心的CDG研究和护理。公众参与会议共创和参与式方法，使得能够生成关于社区需求和偏好的知识。
本文描述了一种可靠、高度可适应的会议共创模式，该模式促进社区建设，传播易懂的信息，并作为一个无边界平台，激励多方利益相关者合作开展CDG研究和药物开发。我们认为这是一种可复制的模式，可得到其他疾病社区和活动的认可并更广泛地采用。
