Patient-Centered Outcomes Research (PCOR) is research that provides patients and their clinicians with evidence-based information in order to help them make more informed healthcare decisions. It also gives patients the opportunity to express what is most important to them and answer questions about the potential benefits and harms of different care options, given a patient’s personal characteristics, conditions, and preferences.

In 2016, DSF was awarded the first of several grants from the Patient-Centered Outcomes Research Institute (PCORI). The first grant award was to assist DSF in forming new collaborations with the goal of developing proposals for comparative effectiveness research in Dravet syndrome, with robust patient engagement and sound scientific rigor. After completing our first project, we received a second award to expand patient engagement in the Dravet syndrome community and to develop a best practice paradigm that would be useful for other rare disease communities in engaging their community members, based on our experience. 

This has been a step by step process for our entire community, but we have taken away many important lessons. We have now woven the PCOR experience and the patient voice in all that we do at DSF to assure that future research is developed to address our community’s needs and priorities. By listening to patients and caregivers and their stories we can best understand the patient’s needs and capture that information. That then gives us reportable data that we can share with clinicians, researchers, and industry members to help overcome barriers and increase participation in future research and allows for shared-decision making when it comes to healthcare decisions. 

DSF recently added a page to our website that helps to explain what PCOR is and gives an overview of our projects and the tools we developed to help educate our community so that they understand there is nothing more powerful than the patient voice and how they can share their experience. If you have any questions on PCOR or the tools we have developed, please contact me