I am pleased to announce that I have been selected to be on the Patient-Centered Outcomes Research Institute [PCORI] Advisory Panel on Patient Engagement. I was nominated by the Consumers United For Evidence-Based Healthcare (CUE) organization. CUE is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare. I am eager to get started working with this esteemed group to advance your interests and the interests of the entire celiac disease community.
PCORI is an independent, non-profit research organization created by Congress that works to increase the likelihood that the hundreds of billions spent annually on clinical medical research actually improves the lives of patients. At the core of PCORI’s mission is to work with healthcare stakeholders (patients, caregivers, researchers, providers, payers, regulators) to identify critical research questions and answer them through comparative clinical effectiveness research [CER], with a focus on procuring outcomes important to patients and caregivers. In other words, PCORI wants researchers to understand what patients are saying would make their lives better, and then evaluate the effectiveness of clinical research on developing treatments and therapies that meets those needs.
Improved patient engagement has been particularly important to advancing celiac disease research. For decades, biopharma, academia, and government all refused to seriously fund research into treatments and a cure for celiac disease because they assumed that all celiac disease patients were well-served by the gluten-free diet. Clearly, they were not engaged with the patient community.
If they were, they would have known that their assumptions were wrong: that as many as half of all celiac patients continue to report symptoms, sometimes debilitating symptoms, despite their best efforts to adhere to the diet. Celiac disease patients are pleading for help beyond the diet. (The same case can be made about the relative lack of diagnostic protocols and tools for celiac disease and non-celiac gluten sensitivity and, therefore, the disappointing diagnostic rates for each.)
The still-growing engagement of celiac disease patients by the medical research community has been spearheaded by the Celiac Disease Foundation. The infrastructure launch of two of our most important initiatives, iCureCeliac® and our Patient Advocate Program were funded in part by PCORI grants. And we have seen some success. While there are still no FDA-approved drugs or treatments, there has been an explosion of celiac disease drugs in the development pipeline, including a handful moving through the clinical trial process.
My appointment to PCORI’s Advisory Panel on Patient Engagement further advances our mission to bring an end to the suffering caused by celiac disease. PCORI is the premier research organization promoting and funding patient engagement as a critical element in the medical research process. I will be joined on the Advisory Panel by experts from across the disease and discipline spectrum. I look forward to sharing with you my experiences in this forum over the next three years. I look forward to making a difference in your life and those you love by advancing celiac disease research towards approved treatments and a cure.
Marilyn G. Geller, Chief Executive Officer