SAN ANTONIO -- Researchers seeking certain breast cancer grants now require patient advocates to be part of their teams, and one advocate speaking at the (SABCS) here has developed an innovative way of providing interested investigators with case studies of successful collaborations.
Patient advocate , who organized the session, told 番茄社区 that advocate involvement in SABCS's program has been an evolutionary process.
Rafte, the survivor founder of the in Houston (which recently closed after 22 years), has served as Baylor College of Medicine's patient advocate member of the SABCS planning committee since 2009. She made news in 2012 when she became the first advocate to lead a session at the symposium. For the past three years she has refined her sessions to reflect the increasing importance of incorporating the patient's perspective into research projects.
She noted that the bar was raised by the (DoD) when it required applicants for its cancer grants be accountable for demonstrating how the advocates would be used effectively in the projects from their onset.
Until then, some grant-funding agencies or organizations may have required the inclusion of an advocate on the research team, but that role was not always clearly defined and may have not been used in the most meaningful ways, with some researchers recruiting advocates pro forma without careful consideration of their potential value.
The session Rafte organized this year,"Career Development: Cultivating Investigator/Advocate Interactions in Your Research," featured a "speed-dating" exercise designed to foster such collaborations between researchers and patient advocates.
The session featured seven research teams that benefited from involving patient advocates as part of their respective projects that hopped from table to table at 11-minute intervals to tell their stories to the approximately 80 investigator participants randomly seated at seven tables.
The participants at one particular table included a medical oncologist from a community practice in central Michigan, a breast cancer surgical oncologist from Peru, another breast cancer surgical oncologist from Brazil, a Nigerian breast radiologist currently in training at University of Chicago, an advocate from Memorial Sloan Kettering Cancer Center, and a journalist covering the session. Each had a specific reason for attending the session.
The seven teams demonstrated the synergy generated by their collaborations and the mutual benefits of pairing informed patient advocates with researchers. (See sidebar here for a full list.)
Following the session 番茄社区 spoke with two of the teams about their respective experiences.
, of Baylor, said that he was writing a proposal for a DoD grant when he realized he had to include more than one patient advocate. Rafte was already aboard his team, and Zhang knew advocate , who heads , which he had started with his mother when she was undergoing treatment for metastatic breast cancer (following her death, Newby continued in her memory).
Newby said that his foundation co-hosts the annual with Baylor, and that Zhang serves as a co-director. The scientist and advocate soon realized the value of their symbiotic relationship, with Zhang often calling upon Newby for advocacy support and Newby enlisting Zhang for his scientific expertise, and their collaboration helped secure the to study bone metastasis.
Zhang also noted that as a scientist, breast cancer had largely been a biological question until his own mother was diagnosed with early stage disease.
"This changed my perspective," he admitted, adding, "I now appreciate more having patients involved in my research."
At Houston's other cancer center, MD Anderson, breast surgical oncologist , decided to learn more about immunotherapy so she went back to school for a PhD in the area.
A number of years ago, she needed a letter of support for a Komen grant and recruited several individuals for an Advocacy Advisory Team for her Breast Cancer Immunotherapy Program.
Although that particular grant was not awarded, the surgeon/scientist meets with her patient advocates, including Rafte, , and , at least quarterly to get their perspective for her on-going and proposed research programs and trials, and to inform them about the status of her work and important developments in the field.
One advocate was able to identify a funding source for one of Mittendorf's projects and they all expressed appreciation that Mittendorf has been proactive at keeping them informed and involved.
They have been working together on designing a series of trials investigating vaccines to be administered to breast cancer patients, with a focus on secondary prevention to prevent disease recurrence in patients who have been declared disease-free with standard-of-care therapy.
Mittendorf said that her research has not only benefitted from the advocates involvement, but that she found the "speed-dating" exercise both fun and rewarding.
"I got more ideas [from the participants] than I gave, and I now have a new to-do list including writing an article in a peer-reviewed journal about working with advocates, and possibly bringing in someone to help with additional advocacy training.
"There's a lot of science and art in surgical oncology," she continued, adding that training hones the scientific skills and deciding what procedure to perform is the easy decision.
"I'm now much better in the art of taking care of patients than I would have been if I hadn't reached out to this group," she said.