Celiac Disease Foundation Approved for a $100,000 Engagement Award to Convene Patients with Celiac Disease to Improve Patient-Centered Outcomes Research (PCOR)

LOS ANGELES, Calif. (June 1, 2020) – A team at the Celiac Disease Foundation has been approved for a $100,000 funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the community convening of patient advocates, researchers, and other key stakeholders to improve access, cooperation, communication and utilization of the patient perspective in celiac disease research.

Marilyn G. Geller, Chief Executive, will lead the engagement project at the Celiac Disease Foundation. In 2016, the Foundation developed the Patient Engagement Celiac Disease Network (PECDN) with a grant from PCORI. The PECDN is committed to meaningful patient engagement as a tool for rigorous research by educating patients, stakeholders, and the research community in general about celiac disease to further increase patient-centered outcomes research (PCOR). With this program, the Celiac Disease Foundation aimed to meet the growing public health challenge of diagnosing and treating celiac disease by developing an educated patient/stakeholder network of individuals who can fully participate in and collaborate on the different aspects of the research enterprise.

“With more than 1,100 PECDN participants it has been challenging to find opportunities for patient advocates to engage with celiac disease researchers outside of participating as subjects in clinical trials,” said Geller. “In order to increase the effectiveness of the PECDN, researchers need to better understand the value of having patients trained in PCOR as study team partners.”

The objective of the engagement project is to bring together in Washington, DC for a full-day meeting, PECDN participants with members of the celiac disease research community and other stakeholders to achieve the following:

  1. 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.
  2. Foster collaboration between stakeholders and patient advocates regarding how to engage patients as partners in research.
  3. 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.
  4. Create a roadmap for PECDN participant engagement in PCOR.

Convening Patients with Celiac Disease to Improve Patient-Centered Outcomes Research (PCOR) will be designed by PECDN members to build patient confidence in the implementation of PCOR, and provide a springboard for further collaboration between patients, caregivers, and other stakeholders with researchers. It is estimated that 100 total stakeholders will attend.

Convening Patients with Celiac Disease to Improve Patient-Centered Outcomes Research (PCOR) is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results.  Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.

According to Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer, “This convening was selected for Engagement Award funding because it will bring together patients and other stakeholders and provide them the opportunity to collaborate around patient-centered outcomes research and clinical comparative effectiveness research (PCOR/CER). We look forward to working with the Celiac Disease Foundation throughout the course of their year-long project.”

Convening Patients with Celiac Disease to Improve Patient-Centered Outcomes Research (PCOR) and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.