Ambassador

Gwen Darien

National Patient Advocate Foundation – Staff Member
National Human Genome Research Institute – Advisor

Years Involved in Patient Centered Research: 10+ years
State: New Jersey

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 at the National Patient Advocate Foundation, Darien leads programs that link PAF’s patient service programs to NPAF initiatives, with the goal of improving access to affordable, quality health care.

Called “a bit of a renegade” by People magazine, Darien 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, Darien 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, Darien 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, Darien championed placing patients at the center of health system change, whether it is for research, public policy, or direct services.

She has served as the chair or on the board of a wide range of program committees and workshop faculties, including the Community Engagement in Genomics Working Group of the National Human Genome Research Institute and as a member of PCORI’s Patient Engagement Advisory Panel. Darien also blogs about her experiences for US News & World Report.

She is a graduate of Sarah Lawrence College, where she also served as an advisor for the Health Advocacy program. She grew up in Milwaukee, but now lives in New Jersey, where she cooks Persian dishes, collects earrings, and improves her friends’ personal libraries, one book at a time.

Involvement with PCORI

Research: Developing Best Practices for Overseeing Learning Healthcare Systems (PI: Steven Joffe) – Co-Chair, Stakeholder Advisory Board
Advisory Panel on Patient Engagement

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Research Phases
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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