Advocacy Core

> Message from Van Van Auken
Chair, Advocacy Core

> Message from Stan Rosenfeld
Chair, Patient Services Committee

Overview
Modeled in part on the successful efforts of UCSF's Breast Cancer Advocacy Core, a group of prostate cancer survivors and advocates has now become an integral part of the Prostate Cancer Program.

In September 1998, an initial group of prostate cancer survivors and advocates formed a core group to assist UCSF faculty in the development of a Prostate Cancer Center. Subsequently, a formal Prostate Cancer SPORE Advocacy Core became part of the original NCI grant that was funded in 2000. The UCSF Advocacy Core was the first such group in the country.

One of its primary goals is to enhance the research efforts of the SPORE. Specifically, advocates facilitate patient access to clinical research trials and improve accrual to clinical trials; participate with other SPORE members in studying clinically relevant questions, solutions of which have a positive impact on those who have or are at risk of developing prostate cancer; and help to develop additional resources to support the research objectives of the SPORE.

Advocacy Core members participate in educational sessions on UCSF laboratory and clinical research, especially by providing their valuable insights into these activities, developing recommendations for streamlining care of prostate cancer patients at UCSF, raising additional funds for Developmental Research and Pilot Project Award Programs, and discussing new research directions.

As part of a telephone peer-counseling program provided through the Cancer Resource Center, Advocacy Core members answer calls from newly diagnosed prostate cancer patients who have questions about their diagnosis and management. SPORE advocates relay relevant information about UCSF clinical trials through their support group network.

SPORE advocates Ron Cape, PhD, and Joseph MacLeish, PhD participate in the Urologic Oncology Protocol Review Committee where new clinical trials, including SPORE trials, are reviewed. SPORE Advocate Francisco Wong-Diaz, JD, PhD, is a member of the Developmental Research Program Review Committee. As a committee member he participates in the annual review of applicants and awarding of funding to the program's portfolio of SPORE pilot projects and career development applicants.

Advocates serve on a variety of committees and assist whenever possible with new projects that are developing. For example, they are helping with the development and implementation of a program in prostate cancer nutrition research headed by June Chan, ScD. For this program, Advocates Stan Rosenfeld, Les Cohen, and other prostate cancer survivors provided input in the development of a survey used for epidemiological research on complementary and alternative medicine.

The private funding raised by the Advocacy Core continues to support ongoing SPORE research, faculty recruitment, career development, and developmental research. The SPORE could not carry out a large number of its objectives without the additional monetary support provided by the advocates. Advocate involvement in these activities is very important; advocates bring the patient's perspective to program development and emphasize the importance to scientists that they work on issues relevant to prostate cancer patients, such as improving survival with new and better treatments.

The Executive Committee meets bimonthly by telephone or in person to review scientific progress and funding allocations, discuss solutions to problems that have arisen, and to develop new strategies for advancement of the program. Grove, Kern, and Van Auken participate in the external advisory board review meeting. The Advocacy Core members meet three times annually, where they are presented with research updates and provide input to scientists about the research program.

UCSF advocates have spoken at the national SPORE meetings about their activities in the UCSF Prostate SPORE. In addition, they have represented the UCSF Advocacy Core at Prostate Cancer Inter-SPORE meetings, where they attended special breakout sessions with advocates from the other Prostate SPORE programs around the country. UCSF advocates honor requests to describe the UCSF Advocacy Core to other institutions that would like to create their own group.

Executive Committee
Andy Grove, PhD
Art Kern
Van Van Auken, BEE, MBA
Marc Shuman, MD
Peter Carroll, MD
Eric Small, MD