Deborah L. Dokken

As an IPFCC staff member, Deborah serves as lead for IPFCC’s project, “The Study of New York Hospital PFACs and PFAs: Prevalence and Functioning.” In this role, Deborah led the development of a survey assessing the prevalence and functioning of PFACs across New York State, interviewed key informants, partnered with a research team to analyze survey and qualitative findings, and is lead author of the final report. She also serves on IPFCC’s project team that is a sub-contractor for the Patient-Centered Primary Care Collaborative TCPI initiative. In this role, she interviews practices and develops profiles highlighting how practices are collaborating with PFACs and PFAs.

Deborah was the Associate Director of the Initiative for Pediatric Palliative Care. She co-founded the nonprofit, community-based organization Partners in Intensive Care, and was a founding member of the Parent Partners Group at The George Washington University Hospital. Deborah has been a member of committees of the Institute of Medicine, the Food and Drug Administration, and the National Institutes of Health. At Sibley Memorial Hospital in Washington, DC, she was Co-Chair of the Patient and Family Advisory Committee and also served on the PFCC Steering Committee for Johns Hopkins Medicine. She is co-editor of the “Family Matters” section of Pediatric Nursing journal, the co-author of several articles related to family-centered and pediatric health care, and has presented at many conferences.

Deborah's career in patient and family advocacy grew out of her own personal experiences, including the loss of two infants due to prematurity and her husband's long battle with a rare abdominal cancer. As a result, Deborah became involved in programs that improve family support and enhance family participation in health care.

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