Patient Advocacy in Research

In 20 years of breast cancer advocacy, I’ve witnessed major changes in attitude toward advocates on the part of basic researchers, clinical investigators, and others involved with the science of the disease. Not so long ago, even a seat at the table – much less a vote –was hard to come by. Advocate presence was met with puzzlement, if not outright resistance. How could we possibly understand the complex scientific issues under discussion? What, exactly, was our expertise? Within the space of a very few years – not coincidentally with the increase in advocate-driven research funding –waves of change began to wash away this resistance. Appreciation for our fundraising efforts, mixed with grudging recognition that people who actually live with a disease have useful perspectives, were contributing factors. In the wake of the 1970s and the women’s health movement, medical paternalism was relaxing its grip, and a new generation embraced the patientdoctor relationship as a partnership of equals. In the late 1980s, AIDS activists demonstrated the power of organized pressure on access and policy when lives were at stake. In the early 1990s, the Internet began to connect and empower a steady stream of newly informed patients. It was in just such an online community, the first breast cancer mailing list, that my own advocacy was born, from a desire to ‘pay forward’ the information and support offered me when I was diagnosed. What began as a small, personal ripple expanded outwards as I recovered from treatment and moved from helping the members of my support group to reaching out to women in emerging organizations and communities, then to all women with breast cancer. I joined with other advocates. Not satisfied with offering only emotional support, we called for better, less toxic treatments available to everyone. The standard of care seemed harsh and crude. Some referred to chemotherapy, surgery, and radiation as ‘poison, slash, and burn.’ Rejecting the metaphors of war, we called for gentler, targeted therapies with less ‘collateral damage.’ To accomplish this, more and better research was needed. We were not content with just handing over the research funds. We looked with suspicion at the minor progress made in Nixon’s war on cancer and began to raise questions about the direction of cancer research, and the lack of collaboration and support for novel ideas. Funded through the efforts of advocates, programs such as the US Department of Defense Breast Cancer Research Program were born. In the years since, the presence of advocates has become commonplace in the world of cancer research. We sit on US FDA advisory committees as voting members, on Institutional Review Boards (IRBs), and data safety monitoring boards for clinical trials. We serve on Specialized Programs of Research Excellence (SPOREs) and in the