Jun 20, 2014
|Peg Ford (right) with Dr. Afshin Bahador, after observing him perform gynecologic surgery using a da Vinci robot, at Scripps Memorial Hospital La Jolla.|
Peg Ford spent most of her adult life on the sidelines of conventional medicine. As a child growing up in a working-class family in Canada, financial barriers made it difficult for her to access health care, and then, as an adult, several negative experiences sent her into the world of alternative medicine, which she perceived to be more patient-focused. But in 2007, Ms. Ford was diagnosed with ovarian cancer and within days, she found herself immersed in the system she had once avoided, running between the offices of gynecologic oncologists, radiologists, and surgeons.
During her year of treatment, which included a successful surgery and chemotherapy, Ms. Ford noticed that her views about conventional "Western" medicine were shifting. Instead of doctors who dismissed her concerns, she was now encountering caring nurses who stopped everything to make sure she was comfortable and talented surgeons who were determined to clear all the tumor margins. During that time, Ms. Ford also learned about the vast infrastructure of cancer research and how it forms the foundation of cancer treatment and hopefully cure. Soon, a thought started coalescing in her mind, eventually becoming a clear goal that would guide the next several years of her life: When she finished her treatment, she would give back to the health care system she had come to trust, and she would do so by becoming a patient advocate, defined by the National Cancer Institute (NCI) as someone who tries "to raise public awareness about important cancer issues, such as the need for cancer support services, education, and research," among other tasks.
Today, Ms. Ford is a leading figure in the cancer advocacy world, having cofounded the Ovarian Cancer Alliance (OCA) of San Diego, which advocates at the national level on such initiatives as increasing research funding for the development of an early-detection test and improved health care practices. Under Ms. Ford's leadership, the organization now runs a local branch of the Ovarian Cancer National Alliance's program, Survivors Teaching Students: Saving Women's Lives (STS). The program brings survivors of ovarian cancer into classrooms to share their experiences with medical and nursing students and veteran health care professionals, thus shedding light on the unique patient perspective. As of December 2013, STS had brought survivors of ovarian cancer to speak with more than 1,767 medical professionals at numerous institutions across the San Diego area.
ASCO's support for patient advocates
As a patient advocate, Ms. Ford places special emphasis on strengthening research funding, an endeavor that requires a strong understanding of current scientific developments in ovarian cancer. For this reason, she views the opportunity to attend ASCO's Annual Meetings as an invaluable educational and networking experience. As the recipient of an ASCO Patient Advocate Scholarship—supported by the Conquer Cancer Foundation—Ms. Ford has been able to attend the 2010, 2011, and 2013 Annual Meetings.
|Peg Ford with editors of the Cochrane Gynaecological Cancer Group: (L to R) Gail Quinn, Peg Ford, Tracey Bishop, and Clare Jess at the 2011 Cochrane Colloquium, in Madrid.|
"To say I see the importance of attending ASCO's Annual Meetings is an understatement," said Ms. Ford. "They not only broaden my understanding of the realm of science and the challenges facing the scientific world, but open my eyes to the necessity of including the voices of survivors in the research discussion."
Like other Annual Meeting attendees who are not physicians, Ms. Ford's membership falls into the category of Affiliated Health Professional, which includes nurses, patient advocates, research staff, and other professionals who are not eligible for Full membership but who devote a majority of their professional activity to the care and treatment of patients with cancer (learn more at benefits.asco.org).
A wider tent for new ASCO members
The Affiliated Health Professional category was created in 2005, but historically only a very few people met its criteria for membership. For example, patient advocates were eligible only if they were CEOs or Executive Directors of nationally or internationally recognized groups. However, in the years since 2005, numerous patient advocates expressed their concern over these criteria to the ASCO Membership Committee, prompting the committee in 2013 to open up membership to personnel of all levels who play leadership roles in patient advocacy, research, or policy, or provide programs, services, information, and support for people with cancer.
Membership Committee Chair Tessa Cigler, MD, MPH, provided further insight into why ASCO made the decision to welcome patient advocates into the Affiliated Health Professional category.
"Patient advocates play such important roles in supporting those living with cancer through raising public awareness of the disease, advancing cancer research, improving quality of care, as well as through tackling regulatory issues affecting cancer research and treatment," said Dr. Cigler. "The Membership Committee is so pleased to be able to welcome patient advocates as ASCO members, a change that furthers our ability to work together to improve the life of each person living with cancer."
Ms. Ford felt compelled to join ASCO for several reasons: "First, I wanted to show support to ASCO as an advocate. Second, I wanted to receive current information on advances and important findings affecting cancer research. And third, I wanted to hopefully collaborate with other professionals in order to expand the roles played by patient advocates in ASCO's affairs."
The value of networking at ASCO Annual Meetings
Ms. Ford's participation at the ASCO Annual Meetings did indeed open the door for collaborations with other professionals in the cancer care community. At the 2010 conference, she was interviewed by the editorial manager of The Oncology Nurse-APN/PA and was subsequently invited to write for one of the publication's columns, "Through the Eyes of An Advocate." In addition, Ms. Ford believes that her attendance at the ASCO Annual Meeting paved the way to her being accepted to the Patient Representative Program of the FDA Office of Health and Constituent Affairs and as a stakeholder reviewer in the merit review panel of the Patient Centered Outcomes Research Institute (PCORI). Both the FDA and PCORI programs seek to include patients' voices when evaluating new research and treatments for serious diseases.
"I cannot thank ASCO enough for the programs and opportunities provided for advocates as I would not have been able to attain the level of involvement or influence without such support and interest," she said.
Ms. Ford's work has also taken her into the international arena, as in 2010 when she attended the Salzburg Global Seminar and worked with other stakeholders to draft a statement about shared decision-making between physicians and patients. The Austria-based Salzburg Global Seminar is a nongovernmental organization that brings together experts and imaginative thinkers from diverse cultures, institutions, backgrounds, and experiences to address issues that present a global concern.
Ms. Ford continues to embrace her role as a patient advocate and is looking forward to the road ahead. At the time of her interview with ASCO Connection, she had just been elected by NCI to be a patient advocate on their Ovarian Cancer Task Force.
"I feel very honored," said Ms. Ford. "To say I'm feeling humble is an understatement!"