Affecting 1 percent of the population, celiac disease is one of the world’s most prevalent genetic autoimmune conditions. In the United States, celiac disease is also one of the least diagnosed, with an estimated 2.5 million Americans continuing to suffer needlessly. To date, the only treatment for celiac disease is a lifelong, strict, gluten-free diet. Research has shown, however, that the gluten-free diet is not a sufficient treatment for those suffering from celiac disease. To develop better treatments and a cure, more celiac disease research is needed. Through PCORI funding, the Celiac Disease Foundation developed the Patient Engagement Celiac Disease Network (PECDN). The PECDN is committed to meaningful patient engagement as a tool for rigorous research by educating patients, stakeholders, and the research community about celiac disease to further increase patient-centered outcomes research (PCOR). However, it has been challenging to place PECDN participants with researchers interested in working with patients as partners. To increase PECDN effectiveness and PCOR implementation, more needs to be learned about how to effectively match patient advocates with stakeholders who are willing to engage them in the research process.
To address this, the Celiac Disease Foundation proposes to hold a community convening in Washington, DC. This full-day, multi-stakeholder meeting of patient advocates, researchers, clinicians, industry leaders, and policy advisors will: (a) educate patient advocates and stakeholders on PCOR so they can transfer knowledge about engagement methods and best practices to wider audiences, including findings from PCORI-funded studies; (b) foster collaboration between stakeholders and patient advocates regarding how to engage patients as partners in research; and (c) allow for the updating of the existing PECDN online training modules with the most current information in PCOR and celiac disease by video recording of the proceedings. This solution will build patient confidence in the implementation of PCOR and provide a springboard for further collaboration between patients, caregivers, and other stakeholders with researchers. The solution itself will be designed, implemented, and led by PECDN participants. The focus will be on fostering the engagement of all participants in dialogue while exchanging ideas, reviewing current research efforts, and identifying research topics of relevance to and determined by the very real patients and caregivers in the room.
To date, celiac disease patients and caregivers have not had the opportunity to be involved in setting research priorities or planning interventions that would improve clinical outcomes from their point of view, nor have they been officially invited to help design a meeting with these goals. This community convening is intended to build and give voice to a new community of fully engaged stakeholders for the purpose of identifying, facilitating, and delivering desired outcomes to patients and their caregivers. The community convening will present opportunities and education regarding future engagement, allowing attendees to help implement PCOR and remain engaged following the meeting. It will add to the body of PCOR through the updating of the current PECDN training modules and the dissemination of meeting findings and serve as a model for patient engagement for other chronic diseases.