Patient-Centered Economic Impacts Project

Gwen Darien is a longtime patient advocate who has played leadership roles in some of the country’s preeminent nonprofit organizations. As executive vice president for patient advocacy and engagement, Gwen leads programs that link Patient Advocate Foundation’s direct patient service programs to NPAF system change initiatives, with the goal of improving access to affordable, equitable quality health care. Called “a bit of a renegade” by People magazine, Gwen has long insisted on pushing boundaries while maintaining a safe space for patients. As editor and publisher of Mamm, a magazine for women with breast or reproductive cancer, Gwen published features on previously taboo subjects, such as dating after a mastectomy, along with the more expected academic features on news and policy analysis. Her media leadership was recognized by the Avon Foundation, which honored her as one of “the most powerful women in breast cancer.” As a three-time cancer survivor herself, Gwen came into cancer advocacy expressly to change the experiences and outcomes for the patients who came after her and to change the public dialogue about cancer and other life-threatening illnesses. With these goals in mind, in 2005 she started the first stand-alone advocacy entity in a professional cancer research organization at the American Association for Cancer Research, causing outside observers to note the organization’s “progressive commitment to patient advocacy.” At AACR, she launched CR magazine – a magazine for people with cancer and those who care for them. Later, she served as the executive director of the Samuel Waxman Cancer Research Foundation; director of The Pathways Project; and executive vice president of programs and services at the Cancer Support Community. In each role, Gwen championed placing patients at the center of health system change, whether it is for research, public policy or direct services. Gwen serves on a wide range of program committees and workshop faculties. She is the past Chair of PCORI’s Patient Engagement Advisory Panel and founding Chair of Community Engagement in Genomics Working Group of the National Human Genome Research. Gwen serves on the Board of Trustees of the USP and is a member of the National Cancer Policy Forum. Gwen also writes about her experiences as an advocate and cancer survivor. A recent piece, Transformation: My Experience as a Patient and an Advocate in Three Chapters appeared in the National Academy of Medicine Perspectives. Gwen is a graduate of Sarah Lawrence College, where she also served as an advisor for their Health Advocacy program. She grew up in Milwaukee, but now lives in New York City, where she cooks Persian dishes, collects earrings and improves her friends’ personal libraries, one book at a time.