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National Effort to Establish Patient-Centered Research Methods Underway


On October 27th and 28th, patient-advocates gathered in Washington, DC for a workshop hosted by the Patient Centered Outcomes Research Institute (PCORI) to begin a dialogue about the inclusion and engagement of patients at every step of the research process.  PCORI, created under the Affordable Care Act, will fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.

 The American Heart Association supports PCORI’s work and was proud that two of our volunteers were selected to attend the workshop.  As the mother of a pediatric stroke survivor, Jessica Spear from Missouri knows firsthand the challenge caregivers face in determining which health care decisions are best for their loved one.  “I feel with patient and caregiver input, we can accomplish an overall better healthcare system in the United States, one that has all parties involved.  We can be the voices for our specific demographic,” she said.

 Rob Edwards, the Director of Strategic Initiatives and Regulatory Affairs at the University of Kentucky Medical Center, also sees great value in PCORI’s mission.  “In all aspects of the health care delivery system, we have struggled to identify sustainable patient-centered models of care, research and clinical education.  We know we need to do better and this is real funding to continue forward the principle of thinking ‘patient first’,” he said.

As Jessica and Rob’s participation in the workshop demonstrates, PCORI is committed to seeking input from all stakeholders.  Currently, PCORI has a survey open for the public to be able to offer research questions they’d like to see answered through the institute’s work.  And Rob shared that the workshop ended with PCORI announcing a new grant opportunity aimed at finding solutions for connecting patients and researchers.  

For more information about PCORI, please visit

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