My appointment to PCORI’s Advisory Panel on Patient Engagement has just ended. It was a productive and enlightening three-year engagement that has helped inform my ongoing service to the celiac disease patient community.
The Patient-Centered Outcomes Research Institute (PCORI) was created by the Affordable Care Act in recognition that patients and their caregivers lack the information they need to contribute in a meaningful way to their own medical care and to proposed or ongoing research that might improve their care. This massive knowledge gap imbalance between patients and medical professionals cripples effective and efficient healthcare.
PCORI funds research that can close this knowledge gap. Indeed, the original funding for our patient registry, iCureCeliac®, was enabled by a PCORI grant to help give patient needs a more powerful voice in celiac disease research.
I was delighted to be asked to join the Advisory Panel because PCORI was embarking on a strategic planning process to develop National Priorities for Health and I know how important it is that the celiac patient community be heard in this process. I advocated before the Advisory Panel that robust patient engagement is as important for the celiac community as it is for any other disease constituency, not only because there are no FDA-approved therapies to treat celiac disease, but also because:
- Patients, through iCureCeliac® and through public testimony, have made it clear to researchers, funders, and government regulators that the gluten-free diet is a wholly inadequate disease management strategy;
- Patients have demanded that the FDA consider symptom relief and not just healing as a condition to approve a new drug;
- Patients are demanding that Congress and the NIH take celiac disease seriously; and
- Patients are participating in clinical trials for potential therapeutics.
One aspect of the Advisory Panel’s work that I am especially proud of is how PCORI can better engage with smaller organizations like the Celiac Disease Foundation to ensure that groups like ours are not left on the sideline when decisions are made about patient engagement and funding.
Finally, the pandemic began during my appointment to the Advisory Panel. It exposed, among other things, the shocking disparities in health equity and health outcomes that are adversely impacting all Americans. As a panel, we demanded that PCORI empower patients from diverse backgrounds with the knowledge they need to more productively engage in health research and healthcare. For example, in the celiac disease research process, the voice of caregivers and the burdens they face has not been as valued as it must be.
It was an honor to be selected to represent the voice of the celiac community on this national level to shape patient engagement priorities and strategies. I look forward to continuing this work with Congress, the NIH, and the FDA.
As always, if you have any questions about PCORI or any of the work of the Foundation, please reach out to me at [email protected] or 818.716.1513, x102.
And if you are inspired to give to continue our efforts, please do so at celiac.org/donate.
To Our Health,
Marilyn G. Geller