SAN ANTONIO—“We're making history right now. This is the first time at the San Antonio Breast Cancer Symposium that an advocate session has happened,” Susan Rafte, founder of the nonprofit Pink Ribbons Project, said during a Special Forum held on the second day of the Symposium—“Role of Advocates in Community, Research, and Policy.” And, Rafte added: “And in a prime time slot.”
“It's exciting,” she said in an interview after the session. Rafte is a 19-year breast cancer survivor and serves as a patient advocate on the Baylor Breast Cancer Specialized Program of Research Excellence (SPORE).
She has been on the SABCS planning committee since 2010, and was the first survivor/advocate to moderate a session at the Symposium in 2012. That session covered issues in breast cancer survivorship (OT 4/10/13 issue).
Now that there is more demand from groups like PCORI (the Patient-Centered Research Institute) and others to have advocates involved and represented in research, there is an open door, she said. “Now that we're at the table it's important for advocates to be at these meetings [like SABCS]—to be at the podium.”
Rafte explained that the purpose of the most recent session was to discuss the role of advocates—how both sides can better work together; what improvements can be made to the process; and what holds researchers back from working with advocates.
The panel included:
- Valarie Worthy, RN, BSN, a patient navigator at Duke Cancer Institute, who spoke about the opportunities for breast cancer advocates at the community level;
- Elizabeth S. Frank, EdM, the lead patient advocate at the Dana-Farber/Harvard Cancer Center Breast Cancer Patient Advocacy Committee, who spoke about the opportunities for breast cancer advocates to be involved in research;
- Jane Perlmutter, PhD, MBA, Founder and President of the consulting company Gemini Group, who spoke about the role of advocacy in policy; and
- Funmi Olopade, MD, FACP, the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics at the University of Chicago; and Eric P. Winer, MD, Director of the Breast Oncology Center at the Susan F. Smith Center for Women's Cancers at Dana-Farber Cancer Institute, both of whom shared their perspectives as researchers during the question-and-answer portion of the session.
Advocacy in the Community
Talking about the role of advocacy in the community, Worthy focused on education and awareness. She talked about her experience as a community advocate. Worthy is a 15-year breast cancer survivor and also serves as President and Founder Sisters Network Triangle NC, an affiliate of Sisters Network Inc., a national African American breast cancer survivorship organization for African American women with breast cancer.
“Starting 26 years ago I had a director who said to all the nurses—go out into the community and talk to people about their health and their health care. Understand why people take medicines—why they're compliant and why they're not compliant,” she said.
She recounted meeting one particular 89-year-old patient during that time: “He stopped me mid-sentence and said, ‘You know we don't care what you know until we know that you care.’
“The great Maya Angelou said it better than I can,” Worthy continued. “I quote her: ‘I've learned that people will forget what you said. People will forget what you did. But people will never forget how you made them feel.’”
One component of community advocacy is showing that you care, Worthy explained. And the other component is collaboration.
“It takes a village to engage the community. Everyone, including oncologists, researchers, support groups, and advocates, need to come together to share information about breast cancer research to raise awareness.”
Advocacy in Research
Patient advocates in research fall across a broad spectrum of activities, Frank said during the session. “Opportunities for research advocates exist at both the local and national level.”
Frank is a 10-year breast cancer survivor and has volunteered at the national and local level. She serves as a patient advocate outside of Dana-Farber and Harvard as part of the Patient Advocate Working Group for the Translational Breast Cancer Research Consortium and the ISPY-2 Trial Data Safety Monitoring Committee. She also serves on the National Cancer Institute Breast Cancer Steering Committee and is Co-Chair of the NCI Patient Advocate Steering Committee.
Frank discussed opportunities for advocates such as participation on NCI SPORE grants—an example of large publicly funded research projects. And other opportunities exist at the local level, she said—at individual institutions. “At Dana Farber we have found that individual investigators are often pleased to share their research with advocates, which can open up discussions about future opportunities and collaboration.
“At the earliest stage of research advocates provide unique insights and ideas for new trials at the concept-generation level,” she said. “And at the protocol-development stage, advocates can provide insights into patient-centered endpoints, reimbursement issues, eligibility criteria, and possible challenges to recruitment interest and ability.”
Research advocates also have the opportunity to expand the type of messages and the modes of communications used by the scientific community to reach a broader audience, Frank added. “Reporting back and translating findings to other advocates and patients is an increasingly important way of making scientific research more transparent. And many advocates believe that transparency is linked to public support of medical research—which today is taking on increasing importance in our current fiscal environment.”
Advocacy in Policy
Finally, speaking about policy advocacy, Perlmutter assured attendees there are opportunities for advocates to affect policy—and outside of lobbying, too. “A variety of people and advocates are increasingly being invited to the table,” she said.
Perlmutter served as lead advocate on the I-SPY 2 clinical trial, and she was also an advocate member of the Clinical Trials Transformation Initiative, Clinical Trials Summit's Informed Consent Steering Committee, Alliance (previously CALGB) Cancer Cooperative Group, and the Translational Breast Cancer Research Consortium.
“There are many efforts at the state and local level where particular grass roots advocates have made a difference,” Perlmutter said. And increasingly, advocates are playing a role in the development of clinical practice guidelines. The American Society of Clinical Oncology, the European Society for Medical Oncology, and the Institutes of Medicine, are all involving advocates more and more, she noted.
Another initiative is the Clinical Trials Transformative Initiative (CTTI), a public private partnership with industry participation, academic participation, government participation, advocate participation, and a variety of others with the mission of identifying and promoting practices to improve the quality and efficiency of clinical trials. Duke is a private partner. The U.S. Food and Drug Administration is currently the primary public partner. “They don't just issue recommendations and papers, they actually work on getting those things implemented,” she said.
Perlmutter ended her portion of the talk with a clear message: “If you see opportunities to get advocates involved, I encourage you to do so.”
The Future for Advocacy at SABCS
Commenting for this article in a phone interview after the meeting, Winer said the key takeaway from the session was about opportunity: “There's a real opportunity for advocates and investigators and clinicians to work together to figure out how to work together better. Advocacy has been part of oncology for the past 20 years, and I think we're only just beginning to get to the place where as researchers we're taking advantage of what advocates can offer—I think we're beginning to see the real value of it.”
He added: “For the future, I think what would have made the session better, would be to have greater interaction between investigators and advocates. The more contact, the better,” he said.
Winer added, though that he counted this session as a success and hoped it would continue: “I'm going to push to make sure that in one form or another it's done again,” he said.
More on the Link between Science and Advocacy at SABCS
From the OT archives: Perspectives from cancer survivorship expert Patricia Ganz, MD; American Association for Cancer Research CEO Margaret Foti, PhD; SABCS Co-Director C. Kent Osborne, MD; and others on the topic in the 2/10/13 issue.