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Prostate Cancer SPORE Patient Advocacy

Prostate Cancer SPORE Patient Advocacy

Members

Dan Shevrin, MD leads the SPORE Advocacy and Outreach Program. He is well qualified to serve in this role, as he has been extremely involved with the prostate cancer community in the Chicagoland area for over 20 years. He is very involved with the Us TOO Prostate Cancer organization and serves as Medical Director of the Us TOO chapter at Glenbrook Hospital, one of the largest and longest running chapters in the Chicagoland area, with monthly meetings typically drawing 40-50 men and family members. He is a frequent speaker at other Us TOO chapters and at various cancer "wellness" centers throughout the region. He has a strong working relationship with local and national Us TOO leaders.

Rudy Lombard, PhD is very involved in studying the relationship of diet and prostate cancer in the African-American community. He is an African-American with strong connections to the African-American and underserved communities in Chicago. He has worked closely with Project Brotherhood, an organization that addresses health issues such as prostate cancer and is centered on barbershops and hair salons in African-American neighborhoods in Chicago. Rudy also serves on the Lurie Cancer Center Patient and Family Advisory Board.

Mr. John Downes serves as co-leader of the advocates. As an advocate for four years, he has attended and supported the Northwestern University SPORE Group. He participates in several Us TOO Chapters and support groups, attended seminars and other prostate cancer related meetings and continues to make efforts to collaborate with our group and others to make a positive difference in the lives of prostate cancer patients.

Mr. Maurice Denton is a prostate cancer survivor with substantial knowledge about prostate cancer treatments. Mr. Denton is an African-American with a strong family history of prostate cancer and brings these important perspectives to the SPORE. He is very involved with the Us TOO chapter in Lombard, Illinois.

Goals and Activities

The value this advocacy group brings to the SPORE is manifest by a shared goal to help translational research create important clinical trials and make them available to the prostate cancer community. The advocacy group achieves its goals through the following efforts:

1. Advocates as "ambassadors"

The advocates serve as a vital link ("ambassadors") between the SPORE and the larger prostate cancer community. The advocates have strong relationships with the prostate cancer community and are perceived as lay experts due to their involvement with the SPORE. They are therefore able to raise awareness in the community about SPORE goals and activities, particularly as they relate to clinical trials.

2. Advocates and Patient Recruitment to Clinical Trials

The guiding principal is that advocates will only recommend a trial if it is one in which they, themselves, would participate if qualified. This personal investment is critical to their success in educating and encouraging men to consider participation in trials. Dr. Shevrin has worked with the advocates to create a "Clinical Trial Data Sheet" for each trial that outlines answers to questions about rationale, eligibility, study design, side effects and relevant endpoints. Dr. Shevrin makes arrangements for clinicians responsible for the trials to attend meetings with the advocates to review the trials and clarify any issues they may have.

3. Advocate Input to the SPORE

The advocates are invited to attend all SPORE investigator meetings. The SPORE leadership recognizes the importance of the patient perspective in the conduct of the SPORE, particularly as it relates to clinical trials. Likewise, the advocates feel strongly that the patient perspective is heard.

4. Community Outreach

Dr. Lombard is working closely with Dr. Brendler to educate the underserved community about the Active Surveillance Program at NSUH. The advocates have also invited SPORE clinicians to speak at various community events such as Us TOO meetings and wellness organizations. The SPORE has been active in outreach events to educate the prostate cancer community. Many SPORE members participate in the annual US TOO sponsored Sea Blue Walk and Roll fund raising event. Also, the SPORE has co-sponsored the Prostate Cancer Education Symposium organized in collaboration with Virgil Simons and the Prostate Net for the past 3 years.

Additional Resources for Patients and Advocates

www.ustoo.org
Us Too International. A grassroots, non-profit prostate cancer education and support network. Co-sponsor of the annual Sea Blue Prostate
Cancer Walk in Chicago held in September.

prostatenet.com
The Prostate Net. Founded by Virgil Simons, advisor to the SPORE, with a mission to educate and provide services to the prostate cancer and
at-risk communities. Co-sponsor of the Northwestern University Lurie Cancer Center Prostate Cancer Symposium for patients and
professionals.

advocacy.cancer.gov
National Cancer Institute Office of Advocacy Relations.