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The Epilepsy Foundation was a strong supporter in working toward the creation of the Patient Centered Outcomes Research Institute (PCORI) within the Affordable Care Act. We supported comparative effectiveness research and PCORI in the belief that this research should support patient access and informed health care decision-making while fostering continued medical progress.
Having an open, patient-centered process for setting research goals and allowing patient and provider voices to be heard will ensure that comparative research yields results that are relevant to them. By working on the research questions that matter most to patients and doctors, the institute's work will have the maximum positive effect on improved patient outcomes and health care quality.
We encourage all patients, caretakers and researchers to apply to be a reviewer for PCORI's funding application. Your input and experience will served the process greatly and provide a much needed perspective.
PCORI is currently looking for individuals who are not usually represented in scientific review groups to serve as reviewers of our funding applications. As a PCORI reviewer, you will work side-by-side with scientists on review committees, adding insight that ensures the research we fund reflects the interests and views of patients, while remaining scientifically rigorous.
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http://capwiz.com/efa/issues/alert/?alertid=62082896
Perhaps an opportunity to get some patient input on the need for more studies on diets, CBT, neurofeedback, etc.?