Conversation with Dr. Jane Perlmutter about the Role of Advocates in Cancer Research
Dr. Jane PerlmutterHow and why did you become a cancer advocate?
I was diagnosed with breast cancer 26 years ago. It was very traumatic and, at that time, there was no Internet and very little information available for patients. In the community where I grew up, cancer was still referred to as the "C-word." It was definitely a life-changing event in many ways. I initially thought a cancer diagnosis was a death sentence, although I learned that was not necessarily the case.
Prior to my diagnosis, I was not typically a person who got involved in advocacy work. But I felt I had a responsibility to give back to the community. I got involved doing some peer support through the American Cancer Society's (ACS) Reach to Recovery program. When I moved to Chicago in the early 1990s, I worked with the Y-ME organization and eventually joined the Y-ME board as well.
In the mid- to late-1990s there were more opportunities for cancer patient advocates to become involved in research efforts. Because I was an academic researcher in psychology earlier in my career, that was very interesting to me. One of the first things I did was enroll in the National Breast Cancer Coalition Project LEAD program in basic science, clinical trials, and quality of care, where they train advocates to be more effective in the research environment. Subsequently, I became a grant reviewer for ACS and for the U.S. Department of Defense breast cancer research program.
What do you view as the role of cancer patient advocates in the research arena?
The advocate's primary role is to ensure that medical research focuses on patients' needs and to help researchers be aware of the urgency to change patients' lives for the better as quickly as possible. The more advocates understand and are comfortable with the science, the better we can play that role.
Our role is not so much to critique the science but to ask the questions—and sometimes they are meant as leading questions: How is this research going to affect patients? How can it affect them faster? If you're designing a clinical trial, have you thought about scheduling things differently to be more convenient for patients? Is your informed consent process really helping patients? Are there ways you can provide other information or do other things to help patients? Asking such questions is one of the most important things for advocates to do.
Is there any specific advocacy experience that you've found especially rewarding?
Perhaps the most rewarding research advocacy experience I have had is as the lead advocate for the I-SPY2 trial, an innovative, biomarker-driven neoadjuvant trial for invasive, nonmetastatic breast cancer patients for whom standard chemotherapy is inadequate. I got involved from the earliest discussions of the trial design and organizational approach, in part because of my special interest in adaptive trial design, and have continued as a member of the I-SPY2 executive committee.
Being the lead advocate provided me with the opportunity to push the envelope in how advocates are engaged. In I-SPY2, I enlisted about 50 advocates who helped ensure that the trial was attractive to potential patients and that patients could easily complete all requirements. These advocates reviewed the protocol and informed consent documents, and developed patient educational material. Also, some advocates have been part of many of the scientific working groups and other committees and/or engaged with specific trial sites. We have also established a partnership with Y-ME for patients who are interested in receiving peer support from specially trained peer counselors.
I expect the I-SPY2 trial to advance the way investigational drugs are tested, including the more extensive involvement of patient advocates in the research process.
What is your advice to new or future patient advocates who want to maximize their impact on research?
My advice is, first, let other people and organizations know of your interest and expertise. You may really want to be on an advisory board like the NCI Director's Consumer Liaison Group (DCLG), but that's not going to happen right away. Prove your merit by getting involved locally. Get to know and understand the science as well as the culture of research.
There is very little room, in my opinion, for advocates who just sit and listen all the time. You have to speak up, or you're not going to add anything. However, when you first join in the research community, it is very good to sit back, listen a lot, see how the dialogue goes, and learn how to formulate your questions. I also urge new advocates to get a really great mentor from the advocacy community.
The environment for advocates is really changing. I personally love research advocacy because I love the research process, but everyone has to find his or her own niche. There's a lot of good work to be done in peer support and public education, and in lobbying legislators for more research funding. There's also a lot of overlap among advocates' various roles. I still do peer-to-peer support with cancer patients.
In some ways, we've learned so much about cancer since I was first diagnosed. But in other ways, we've made so little progress. What we really have to do is push the envelope, change the paradigm, and work smarter.
NCI Cancer Bulletin October 4, 2011 - National Cancer Institute
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