Background: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
Keywords: Co-creation; Community centricity; Congenital disorders of Glycosylation; Patient and public involvement (PPI).
In recent years, there has been a growing trend towards involving patients and the public in healthcare and research, transforming traditional conferences that follow a one-way information-sharing approach into inclusive and interactive platforms. This study presents a unique conference co-creation model established by the World Congenital Disorders of Glycosylation (CDG) Organization that emphasizes partnership with the community in its design and implementation. Besides involving the community in the planning phase, the model also uses other participatory methods. The 5th World Conference on CDG, held in 2021, serves as a prime example of this approach. The resulting community partnership model is shown to produce outcomes tailored to community needs, promoting people-centered research and care. This model is reproducible and easily adaptable by other disease communities and events to promote collaboration and problem-solving.
© 2024. The Author(s).