The Patient-Centered Outcomes Research Institute (PCORI) has appointed the founder and director of the NEC Society, Jennifer Canvasser, to serve on their Patient Engagement Advisory Panel. Jennifer is a macropractice social worker, PCORI Ambassador, and a bereaved mother. She completed her undergraduate degree at UCLA and earned her Master’s in Social Work from the University of Southern California, concentrating her studies on developmental psychology, community organizing, and social movements.

Jennifer and her son, Micah

After her 11-month-old son, Micah, died from complications of necrotizing enterocolitis, a devastating intestinal disease, Jennifer brought together renowned investigators and clinicians with committed patient-families to advance research, awareness, care practices, and policies for medically fragile babies and their families in the NICU. Jennifer’s personal experience of spending nearly a year in the NICU and the PICU as a mother of a medically fragile baby, coupled with her professional expertise as a social worker and director of the NEC Society, render her deep commitment to patient family–centered research, care, and policies.

As a member of the PCORI Patient Engagement Advisory Panel, Jennifer will apply her experience and expertise to help PCORI refine and prioritize the research that it funds. She will also ensure that the research PCORI supports, centers on the outcomes that matter to patients and other healthcare stakeholders.

Jennifer shares, “I am honored to become increasingly active with PCORI because I recognize the profound implications of this work for medically fragile children and their families.” 

Jennifer was selected on the basis of her experience, expertise and ability to contribute to the panel’s mission. Panel members represent a broad range of healthcare stakeholder groups and perspectives, including patients, family caregivers, clinicians, drug and device makers, as well as researchers, among others.

PCORI is an independent, nonprofit organization authorized by Congress to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

More information about the Patient Engagement Advisory Panel, including its scope of work and a list of all members, is available on the PCORI website.