This conference is funded primarily through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award which aims to include patients, caregivers, clinicians, and other healthcare stakeholders in the research process. Healthcare research traditionally includes only scientists and other research professionals. Instead, this meeting involves non-traditional stakeholders in selecting topics, designing and conducting research, and disseminating results.
The organizers of this meeting support PCORI’s belief that engaging stakeholders with firsthand experience of conditions can produce more patient-centered, useful, and trustworthy research, ultimately leading to greater use of research results by patients and the broader healthcare community. The purpose of this meeting is to align on the current state of research and identify research gaps that exist around the long-term functional impacts of resective and disconnective pediatric epilepsy surgeries, across the domains of motor, orthopedic, sensory, behavioral, medical, cognitive, and social impairments across the lifespan. The group will develop a set of preliminary patient-centered outcomes research goals and objectives driven in large part by the needs and gaps surfaced by parents, caregivers, and adult patients prior to the meeting set forth as topics in the agenda.
By convening this group of diverse stakeholders, we will create a powerful collaboration that can work together over the long-term to close the research gap around the functional outcomes of the major pediatric epilepsy surgeries. This is the first intentionally patient-centered effort focused on aligning key stakeholders around the long-term functional outcomes of resective and disconnective pediatric epilepsy surgery. This meeting will lay the foundation for a longer-term collaborative working group that can accelerate and more efficiently facilitate the planning of future studies. Over time, this will assist the clinical community with the development of evidence-based recommendations and establish standards of care, as well as facilitate the development of patient-centered outcome tools to be used in future research studies.
