Patient Advocate Program FAQs
The goal of our Patient Advocate Program is to teach you more about celiac disease and clinical research so that by the end of the online program you are prepared to participate in research as an informed Patient Advocate.
What is patient-centered outcome research?
For too long, scientists have been conducting, evaluating, and disseminating research without the benefit of your expertise. That’s right. Patients and their caregivers are experts in living with their health condition. Your unique perspective gives you a nuanced understanding of celiac disease. We need patient-centered healthcare for celiac disease, and the way to make care patient-centered is to start with patient-centered research. Patients engage in all aspects of the research process, from identifying key research questions to dissemination and implementation of results.
What would I do with this training?
Researchers are looking to partner with trained patients. The national organization, Patient-Centered Outcomes Research Institute (PCORI), involves trained patients in evaluating their funding applications and as PCORI Ambassadors. The National Institutes of Health (NIH) also has opportunities for patient advocates to evaluate grant proposals. The Celiac Disease Foundation also offers opportunities to serve on the Foundation’s Research Committee and on the steering committees of Celiac Disease Foundation-funded research projects.
What will I learn?
You will learn about patient-centered outcomes research and how it has impacted our healthcare system. You will learn about the latest in celiac disease research and interact with leading scientists in the field. You will learn about clinical and scientific research processes, how to ask your own research questions, and how to serve on research study committees.
What is expected of me?
- Register to be a Patient Advocate
- Complete a baseline assessment of your celiac disease knowledge
- View the Online Program at your convenience
- Complete each Understanding Check
- Complete a post-assessment of your celiac disease knowledge
- Enter your or your child’s data in the iCureCeliac patient registry
What else do I need to know?
Patient advocates who complete all of the modules are eligible to:
- Participate in research opportunities with the Celiac Disease Foundation’s partners
- Serve on research study committees
- Mentor new patient advocates
- Become a PCORI Patient Ambassador