Putting a Face to the Disease
Conquest - Spring 2009
By Sandi Stromberg
Tom Touzel got his first taste of patient advocacy when he was diagnosed with bladder cancer in 2005.
As he searched for the best treatment options, he admits to having been “pushy and a bit proactive” before he chose M. D. Anderson. But the minute he walked through the door, he knew he’d made the right decision.
In fact, the Canadian native exchanged his winter residence in Florida for a condominium in Houston, where he can monitor his health without the expense of traveling to and from the cancer center. And for the last three years — with three surgeries and a history of smoking behind him — he has spent five days a week at M. D. Anderson advocating for bladder cancer patients through a Specialized Programs of Research Excellence (SPORE) grant.
Established by the National Cancer Institute in 1992, SPOREs are multi-project, multidisciplinary, “translational research” grants, meaning research done at the “bench” (laboratory), then progressing to the clinic for the benefit of patients. Translational research can be bi-directional in that clinicians often make observations that stimulate basic research. The patient advocate research team is an essential and required component of SPOREs.
“Every five years investigators have to re-earn their SPORE,” says Robert Bast Jr., M.D., vice president for translational research at M. D. Anderson. “It’s highly competitive and demands there be results. It always asks, ‘Did you accomplish something beneficial for patients?’
Currently, M. D. Anderson is the recipient of 11 of these prestigious, multimillion dollar grants — in leukemia, melanoma, and cancers of the bladder, brain, breast, head and neck, lung, ovary, pancreas, prostate and uterus. Eleven SPOREs are the most granted to any U.S. institution.
Twenty-nine patient advocates volunteer their time to provide principal investigators with patient perspectives. Though their roles differ, depending on the disease site, patient advocates generally participate in research discussions and strategy meetings, review clinical trial protocols, identify barriers and gaps in the research system, talk to patients, and ask results-oriented questions that help focus on moving discoveries to the clinic.
In 2006, Touzel accepted an invitation to become a patient advocate from Colin P.N. Dinney, M.D., professor and chair of the Department of Urology and principal investigator on the genitourinary (bladder) SPORE.
“Advocacy allows patients to feel empowered,” Touzel says. “When I grew up and went to the doctor, you didn’t question anything. Doctors were omnipotent. Today patients get more involved in their treatment, and advocates act as conduits to aid that process.”
“Besides increasing public awareness about bladder cancer,” Dinney says, “these advocates help the patient and family achieve more control over their disease and reduce the feelings of helplessness and hopelessness that often accompany diagnosis. They also bring the patient voice and experience into research. Their ‘why’ questions help us focus our research, identify translational gaps and find solutions. In essence, they put a face to the disease, which helps us as physicians keep our perspective as we work toward understanding the disease and finding better treatments.”
For Dorothy Paterson, a patient advocate on the breast cancer SPORE, her role has been “about building relationships.”
“If the only thing I do is be a face of a patient — to remind doctors of the urgency of translating their findings in the laboratory as fast as reasonably possible to the clinic — I’ve done my job,” she says.
When she was diagnosed with stage III ductal carcinoma in 1998, she was married with two children, 9 and 11 years old, and worked as a full-time geologist.
“It was a difficult 18 months of treatment,” she says. “But I had strong support from my family and friends, as well as my company and colleagues. About the time I was ready to give back, a new program was being launched at M. D. Anderson — the Pink Ribbon Volunteers. Being a founding member of it in 2001 was the beginning of my advocacy.”
In July 2006, Gabriel Hortobagyi, M.D., professor and chair of the Department of Breast Medical Oncology and principal investigator on the breast cancer SPORE, asked her to serve as part of his patient advocate research team.
Along with Touzel and others, Paterson traveled to Baltimore to attend the 2006 SPORE conference. “They actually sent us a notebook on genomics ahead of time. We were to work through it and then attend a separate class at the conference so we could understand what a huge impact the genome mapping project has had on cancer research.
“For the first time, we were in the room with people from all over the United States representing all different disease sites. It was then that we saw what we could do as advocates and how we could have an impact on research. We also realized that advocates at M. D. Anderson needed to have joint meetings.”
Energizing each other
Jean-Pierre Issa, M.D., professor in the Department of Leukemia and principal investigator on the leukemia SPORE, initiated the first meeting of M. D. Anderson patient advocates at the 2007 SPORE conference in Baltimore. To continue the synergy from that event and harness the collective talent, Nancy Hubener, project director in the Office of Translational Research, stepped in to facilitate these meetings, which now occur three to four times a year at M. D. Anderson.
“This is a group of enthusiastic, motivated people who have a lot to offer to other patients and to researchers,” says Hubener. “They have a unique perspective. Many didn’t know each other before we implemented these meetings, and now, I think, the group has formed a strong bond; they share their ideas and their experiences and inspire one another.”
“It’s very energizing to see what others are doing and to share ideas,” Paterson says. “For example, Tom Touzel is helping accrue patients for clinical trials and that will be the next step for some of us on the breast SPORE. We can discuss how he’s approached it and what he’s learned so we don’t reinvent the wheel. We need more people to enroll in clinical trials, but we recognize there are barriers and we want to help remove them.”
Paterson contends that a significant part of her emotional healing has been her involvement as an advocate. She reviews grant proposals, making sure they are written in lay terms when necessary, attends conferences and shares how M. D. Anderson leverages advocates to reach the next level of research.
“We’re also willing to ask the ‘stupid’ questions,” she says. “In a multidisciplinary team there are different researchers present who might be reluctant to ask certain questions, but advocates can. We help them get it down to the basics.”
Sharing the journey
As a patient advocate on the leukemia SPORE, Susan Massman combined her communications expertise with being a survivor of three different cancers. In 1994, she was diagnosed with breast cancer, in 2003, with leukemia and, in 2005, with basal cell carcinoma.
“I visit with cancer patients, one-on-one and in groups,” she says, “discuss the benefits of clinical trials and give them hope that recovery is possible. I believe I’m alive because I participated in a clinical trial testing taxol, which today is an approved cancer treatment used worldwide. And at the same time, I contributed to the healing of future cancer survivors.”
Laura Sasse, grant program manager in the Department of Leukemia, helps incorporate patient advocates in various ways. “For the last three years, they have attended the annual American Society of Hematology meetings. We included their input in our application for the grant renewal in 2008, which was extended for five years. And our principal investigators feel that advocates help them maintain a continuous focus on translational research.”
Over the last year, as the number of SPORE grants awarded to M. D. Anderson has grown, other patients have joined the advocacy teams. Along with Touzel, Paterson and Massman, they are helping build relationships as they become emissaries for clinical trials and empower themselves to ask the essential questions. As the face of the patient, they personify the humanistic side of medicine and intensify M. D. Anderson’s mission.
Conquest - Spring 2009
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