PHEN's Education and Community Engagement Activities and Plans

1. PHEN’s Education and Community Engagement Activities and Plans Speakers: Mr. Mark W. Kennedy, MBA PHEN Director of Outreach Kimberly R. Rogers, Ph.D. PHEN Director of Education Programs “Knowledge is the Best Defense Against Prostate Cancer”

2. Monthly Webcast Partner • Dr. Edward Benz - President • Ms. Anne Levine - Vice President of External Affairs • Ms. Magnolia Contreras – Director, Community Benefits Dana-Farber Cancer Institute

3. Sponsors

4. Join the Conversation! Viewers can submit questions for our speaker during the webcast via Email: rapcancer@prostatehealthed.org Facebook: ProstateHealthEducationNetwork Twitter: @RAPCancer

5. Today’s Presentation A Review of PHEN’s Education and Community Engagement Activities and Plans Guest Speakers Mr. Mark W. Kennedy, MBA PHEN Director of Outreach Kimberly R. Rogers, Ph.D. PHEN Director of Education Programs

6. "To eliminate our prostate cancer crisis, every month should be prostate cancer awareness month in Black America. With our Survivor Network and community partners across the country, PHEN has a unique opportunity to make this happen.“ --Thomas A. Farrington, President and Founder, PHEN

7. The African-American Prostate Cancer Crisis • Incidence rate: 228.8 per 100,000 men • Mortality rate: 53.1 per 100,000 men • Compared to Caucasian men • Incidence rate: 140.3 per 100,000 men • Mortality rate: 21.7 per 100,000 men • Disparity • Incidence: 1.6 times as great • Mortality: ~2.5 times greater Source: DeSantis, C., Naishadham, D. and Jemal, A. (2013). Cancer Statistics for African Americans, 2013. CA: A Cancer Journal for Clinicians, 63 (3), 151-166.

8. U.S. Prostate Cancer Death Rates by Race and Ethnicity, 1999-2012 Mortality source: U.S. Mortality Files, National Center for Health Statistics, CDC.*Rates are per 100,000 and are age-adjusted to the 2000 U.S. standard population. Death rates cover 100% of the U.S. population.

9. PHEN’s Position • Knowledge Is The Best Defense Against Prostate Cancer • Black America should be the most knowledgeable and engaged

10. Major Educational Void

11. Educational Focus: Prostate Cancer • General education and awareness • Interaction with primary care physician • Diagnosis • Treatment • Survivorship

12. PHEN Educational Programs – National Outreach Rally Against Prostate Cancer (RAP Cancer) Initiatives • PHEN Survivor Network (2003) • PHEN Monthly Support Group (2003) • PHEN Television (2007) • Annual Father’s Day Rally (2009) • Monthly Webcasts (2011) • Educational Symposia (2013)

13. PHEN Survivor Network • Foundation for PHEN education & outreach programs • Started in 2003 • 200+ members nationwide • Lead and support ongoing educational efforts

14. PHEN Monthly Meetings in Partnership with Dana-Farber Cancer Institute • Since 2003 • Support Group Functions • For newly-diagnosed men and survivors • For caregivers, spouses, and families • Coordinate community outreach activities • Education and awareness events • Recruit and train members of the Survivor Network

15. PHEN Monthly Meetings and Webcast • Spring 2015 survey of men in MA who attend Monthly Support Group Meeting • 78% attended to learn about new treatments • 72% wanted to receive support from other men • 67% wanted to provide support to the recently diagnosed • 53% wanted assistance in managing survivorship • 22% sought to improve their knowledge of health issues • PHEN Webcast • Virtual attendance and accessibility to benefit men nationwide

16. PHEN Online Resources www.rapcancer.org • PHEN Television and Monthly Webcasts • Archived footage of webcasts, summit presentations, Father’s Day Rally and symposia • 123 presentations to support & inform survivors and their families • Frequent topics include: • Caregivers, Clinical Trials, Early Detection, Partnerships, Sexual Dysfunction, Survivorship, Treatments

17. Church Partnerships-Community Outreach • Education and outreach partners since 2009 • 400+ church partners nationwide • Churches have a real thirst for knowledge • 88%: PHEN increased knowledge & awareness prostate health • 75%: parishioners received supports & benefits from PHEN • 100%: pleased with information provided to their congregants • 69%: requested more education and awareness activities

18. The Father’s Day Rally-Community Outreach • Father’s Day Event started in 2009 to increase prostate cancer awareness • Hundreds of churches nationwide register for the rally • Reached approximately 200,000 people • Survey of Father’s Day Rally church leaders in 2014 • 95% of churches report success • 94% of survivors/loved ones pleased with recognition • 98% want to participate in the FDR next year • 91% want to participate in additional PHEN activities

19. 3rd Annual Prostate Health Educational Symposia • 13 symposia in 10 states • Educate about risk, early detection, treatments & survivorship • Led by volunteer medical faculty, organized by Survivor Network members and church volunteers

20. 2015 Symposia Church Partners • Ben Hill United Methodist Church (Atlanta, GA) • Sixth Avenue Baptist Church (Birmingham, AL) • Twelfth Baptist Church (Boston, MA) • St. Luke Missionary Baptist Church (Chicago, IL) • Friendship-West Baptist Church (Dallas, TX) • The Lighthouse Church (Houston, TX) • Greater Grant Memorial AME Church (Jacksonville, FL) • Bethel AME Church of Los Angeles (Los Angeles, CA) • Second Baptist Church (Miami, FL) • Carver Memorial Presbyterian Church (Newport News, VA) • Acts Full Gospel COGIC (Oakland, CA) • St. Matthew Baptist Church (Raleigh, NC) • The Saint Paul’s Baptist Church (Richmond, VA)

21. 2015 Symposia Volunteer Medical Faculty Clinicians Topics Covered Early detection Screening Diagnosis Treatment options Incontinence and erectile dysfunction Diet and nutrition Clinical trials Financial resources • 26 Volunteer Faculty • The Importance of Knowledge & How to Use It • Represented • Internal Medicine • Urology • Urologic Oncology • Hematology/Oncology • Radiation Oncology

22. 3rd Annual Symposia, Continued • ~900 attendees • 34% identified as at-risk for prostate cancer • 14% were prostate cancer survivors • 13% were wives or caregivers • 71% learned of symposia through churches • 89% satisfied with topics and speakers • 99.5% plan to/recommend someone attend in 2016

23. New Partnerships and Services • FREE prostate cancer screening • Prostate Conditions Education Council (PCEC) • Helen Diller Family Comprehensive Cancer Center at UCSF • Dana-Farber Cancer Institute and Men’s Health Boston • GA Prostate Cancer Coalition & Emory Saint Joseph’s Hospital • 223 men were screened • 21 men needed follow-up care • Two men have been diagnosed with prostate cancer

24. 3rd Annual Symposia Partners All efforts made possible through the support of PHEN’s partners.

25. Church Partnership in Atlanta, GA • Overview of Ben Hill United Methodist Church • 2nd year as a church partner • Needs of the church and the community • Community response to the program • Future strategies for engagement in Atlanta

26. Next Steps To make every month prostate cancer awareness month in Black America.

27. Leveraging PHEN Assets • Expansion • Horizontally (More cities, communities & partners) • Vertically (Deeper educational and support services) • PHEN Assets • Survivor Network (increase membership to 1,000) • Church and community partners • Industry partners • Academic, research, and clinical partners • Proven educational programs

28. PHEN Partnerships for Education, Support and Outreach (PESO) • Local PHEN PESOs: • Provide forums for prostate cancer survivors to network and to provide ongoing mutual support on survivorship issues • Provide continuing education for survivors, family members and caregivers • Support prostate cancer community education and awareness outreach efforts • Replicating Boston Model Nationwide

29. How? • Use Dana-Farber PHEN Monthly Meetings and Webcasts as a foundational resource • Partner with local cancer centers and other organizations • Mobilize local PHEN Survivor Network teams • Work with church partners for community outreach

30. PHEN’s Responsibilities • PHEN Survivor Network takes leadership roles for the meetings • Provide the monthly presentation/program and guest speaker for the live webcast • Provide promotional materials for distribution within the community • Engage in community outreach efforts

31. PHEN’s Responsibilities, Continued • Publish monthly e-newsletter • Online support for survivors and newly diagnosed men • Maintain attendee contact information & communications

32. Partner Responsibilities • Cancer Center Partners • Provide meeting facilities including computer and A/V equipment to broadcast the live webcasts • A medical specialist to serve as an advisor during a portion of the meetings • Parking and food • Assist in meeting promotion

33. Partner Responsibilities, Continued • Community Partners • Provide outreach venues for education and awareness activities • Promote monthly meetings to their constituents

34. The Boston Model in WorcesterFirst PESO • University of Massachusetts Medical School • In place since June 2015 • Enthusiastic community response

35. PHEN Survivor Network Activity Chatman Carruthers - Atlanta • Participated as the patient advocate voice with doctors from Emory University and Georgia Urology at an Astellas Oncology awareness event • Led prostate cancer awareness activities at Cascade United Methodist Church during Prostate Cancer Awareness month Odell Lewis – Montego Bay, Jamaica • Recently involved in the largest prostate cancer education and screening event ever in Jamaica Michael Shaw – Oakland, CA • Partnered with his church and held the largest PHEN Symposium ever in 2015 with 108 men screened. Also established a support group in partnership with the UCSF

36. PHEN Survivor Network Activity, Con’t Michael Jackson – Maryland • Leading prostate cancer awareness for Omega Psi Phi Fraternity Freddie Muse – Los Angeles, CA • Has led a partnership between two churches to conduct PHEN symposia for the past three years, and his organization, Men's Cancer Network, organized and held its 2nd Annual Prostate Cancer Rally and Benefit Concert in 2015 to promote prostate cancer awareness Paul Covington - New York City, NY • Spoke to elders at Stuyvesant Heights Senior Center in Brooklyn

37. PHEN Survivor Network Activity, Con’t Dr. Artie Shelton-Maryland/Washington, DC • Sept. 12th- Carried PHEN banner at the Convoy of Hope program hosted by Evangel Assembly in Temple Hills, MD. +1,200 volunteers from 71 churches/organizations participated in the effort • Sept. 17th - Moderated the session "Research to Address the African American Prostate Cancer Burden " at PHEN's 11th Annual Summit in Washington, DC • Sept. 26th - Participated in the Central Baptist Church of Camp Springs, MD Prostate Cancer program • Sept. 30th -  Represented the patient advocate perspective as part of the Astellas Oncology-hosted Prostate Cancer Awareness event in Philadelphia • Oct. 3rd - Presented at the "Cancer Celebration of Survivorship" forum held at Zion Baptist Church in Washington, DC

38. Support from Our Women Dr. James Roberson and Mrs. Wendy Roberson - Maryland • Participated in a panel discussion at PHEN’s 11th Annual African American Prostate Cancer Disparity Summit in Washington DC. Mrs. Roberson has agreed to help PHEN with its outreach to the women in our survivors' lives Ms. Mary Henderson – Vallejo, CA • Participated in PHEN’s webcast and hosted an event at her church, Friendship Missionary Baptist Church

39. Working Together We Will  • Increase prostate cancer awareness and knowledge  • Grow the survivor network and community partners • Lead prostate cancer advocacy • Recruit leaders at all levels to join with us • Save lives • Eliminate the African American prostate cancer crisis

40. “Knowledge is the Best Defense Against Prostate Cancer” Thank you for joining us!

41. 2015 Calendar of Events Monthly Webcasts and Support Group Meetings: Second Wednesday of every month Next Webcast: November 11th at 6:00pm ET!