Advocacy Core

A Message from Stan Rosenfeld
Chair, Patient Services Committee, Prostate Cancer SPORE Advocacy Core

We in the UCSF Prostate Cancer SPORE Advocacy Core address both the needs of the research program in the search for a cure and risk reduction behaviors, and those of patients.

I was diagnosed with prostate cancer in 1997; it was a very traumatic time for me. I became a UCSF Prostate Cancer Advocate because I wanted to try to make other men's experience less stressful. I say less stressful because the time of diagnosis will be a stressful time for every man, no matter what else may be occurring in his life at that time. There are many things that I, and other survivors, have learned from going through diagnosis, making a treatment decision, and recovery, that may be helpful to newly diagnosed men and their loved ones. I am the chair of the patient services committee, a group working to better meet the needs of men with prostate cancer. Much, but not all, of our work has a research component.

The advocacy core members are participating in several initiatives directly related to the SPORE grant. These initiatives include:

• Increasing accrual to clinical trials through a peer counseling program and support group network
• Participation in advisory committees to help assess the translational (clinical) benefits of research
• Assistance in providing the resources to conduct such research
• Advice on how to allocate resources so that they enhance research
• Input into the development of a study designed to measure if peer counseling can improve health-related quality of life
• Development of prostate cancer awareness projects, especially in the underserved population, to promote early detection and better treatment, and increase this population's survival by enrollment in clinical trials

We feel that we have been successful in our work for many reasons. Keys to our success include: the collaborative spirit with the clinical investigators and research scientists, participation by a select group of advocates who collaborate and contribute, UCSF leaders who seek insight from individual advocates, advocate participation that does not hamper the physicians' and researchers' work, focused goals that add specific value, and good communication coupled with strong leadership.

I believe that all major clinical and cancer research programs can benefit from interacting with a group of cancer survivors. The UCSF prostate cancer advocacy group includes a diversity of individuals, each with his or her own "pet" area of interest. These individuals are working where their interests lie, and therefore are doing rewarding work. By working with the physicians and the researchers at UCSF we have made a major difference.