When the American Association for Cancer Research hired Gwen Darien—former Publisher and Editor-in-Chief of MAMM magazine—as Director of its newly created Department of Survivor and Patient Advocacy, the cancer research society demonstrated a progressive commitment to patient advocacy.
Ms. Darien and AACR CEO Margaret Foti, PhD, recently discussed AACR's decision to start the first such stand-alone advocacy entity in a professional cancer research organization, and its growing interest in consumer communications and advocacy.
AACR's mission over the years has been about bringing people together, publications, and meetings, Dr. Foti explained. “But our mission for the last decade has been dedicated to advancing the prevention and cure of cancer, and all new association programs come from this mission.”
For the past seven years, AACR has presented Public Forums and a “Scientist↔Survivor Program” at its annual scientific conference.
In fact, Ms. Darien's first formal encounter with AACR began in 2000 when she was with MAMM and attended that program as a participant.
Her relationship with AACR continued in 2003 and 2004 when she was invited to serve as faculty at the ASCO/AACR Methods in Clinical Cancer Research Workshop in Vail, Colorado.
Then, at the SPORE meeting in June, she and Dr. Foti began discussing projects they might work on together.
Ms. Darien was asked to join AACR in an official capacity last fall, and the concept of a dedicated Department of Survivorship and Patient Advocacy became a reality.
This year's Public Forum, scheduled for April 16 in Anaheim, Calif., at AACR's 96th Annual Meeting, is titled “Progress and New Hope in the Fight Against Cancer: A Public Forum Highlighting the Latest Discoveries.” It is open to meeting attendees, their families and friends, and members of the local general public, and will be followed by an Ask-the-Experts session.
The Scientist↔Survivor Program begins one day before the official meeting and runs for five days. It offers cancer survivors and patient advocates the opportunity to learn about the latest developments in cancer research, and to meet and interact with leading cancer researchers. The double-sided arrow in the program's title connotes the ongoing interaction.
The program—which, each year, usually sponsors about 40 survivors, and includes an average of 25 researchers as mentors—is intended to benefit all involved, with cancer survivors and advocates enhancing their knowledge of cancer research and related issues, and scientists gaining a deeper personal understanding of how cancer affects patients, their families, and friends. Today, one quarter of the survivors and advocates are from outside the United States.
AACR believes that by strengthening communications and forging partnerships, the Scientist↔Survivor Program will help efforts to accelerate progress in the fight against cancer, Dr. Foti said.
Ms. Darien is an 11-year survivor of non-Hodgkin's lymphoma. Prior to working at MAMM—an award-winning consumer magazine dedicated to women with breast and reproductive cancers—when it launched in 1997, she spent 20 years in nonprofit organizational management, including working as a planning and management consultant, Executive Director of Los Angeles Contemporary Exhibitions, and Deputy Director of P.S. 1 Contemporary Art Center in New York.
That experience should prove valuable in her role at AACR, which intends to produce a new Survivor and Patient Advocacy Web Site Portal on the Association's Web site; develop more consumer-oriented publications; and hold its first free-standing four-day Scientist↔Survivor Program in June in Bethesda.
Sessions being planned by Ms. Darien will feature panel discussions with survivors and scientists, as well as lectures, and will include such themes as basic introductions to cancer research and biology, cancer drug development, cancer genetics, tissue issues, survivorship issues, and team science.
“The Scientist↔Survivor Program helped me develop enduring relationships with many of the other participants, and the intense experience caused bonding among laypeople and researchers,” she said.
Dr. Foti noted that several basic scientists have indicated that interacting with consumer groups had changed their perspectives on their work, adding a greater sense of urgency to what they did, and helped them think through how research protocols can affect people in the clinic.
Dr. Foti noted that she has long wanted to expand AACR's communications efforts to audiences beyond the scientific membership, and those intentions have now come to fruition.
The addition of the survivor and advocacy department shows that AACR has backed its commitment to fostering partnerships among the various constituencies of the larger cancer community, and to continuing to change its public perception from a basic to translational research association. This not only reflects the trend in cancer research, but is a more accessible and user-friendly concept for the public.