Lorna H. McNeill, PhD, MPH Assistant Professor, Department of Health Disparities Research University of Texas M.D. Anderson Cancer Center

 Cancer-related health disparities  Project CHURCH aims and study design  Lessons learned

 Cancer-related health disparities  Cancer is the 2 nd leading cause of death for racial/ethnic minorities in Texas.  One-third of all cancer deaths are attributed to lifestyle factors such as diet, overweight and obesity, and physical inactivity, and thus can also be prevented.  Regular screenings to detect breast, cervical, prostate, and colorectal cancer can catch cancer early and reduce death.

 African Americans in Texas are making progress in some areas (reduction in heavy drinking)  In recent years, cigarette smoking, physical inactivity, and overweight and obesity are increasing among African Americans in Texas and fruit and vegetable consumption is declining.  Cancer screening for colorectal cancer has remained stable; mammograms by African American women over 40 has declined

 Philanthropy funding  Develop common research study that would benefit junior faculty  All faculty are Co-Is  Provide service to the community

 Black churches have promoted health, education, business, and political activism within the African American community.  In general, African American churches include health services and programs to their membership.  They have been an effective partner for health promotion efforts, including cancer, diet and physical activity research.  70% of African American regularly attend church.  Families have been members for generations; increases our ability to locate participants in later years.

 Windsor Village United Methodist Church ▪ One of the largest UMCs and in Houston; ~ 15, 0oo members ▪ Active church with over 100 ministries, engaged in health & social-related services ▪ Engaged pastor and congregation ▪ Long-term relationship with M.D. Anderson

 C reating a H igher U nderstanding of Cancer R esearch and C ommunity H ealth  Research study: investigate the role of behavioral, social, and environmental factors on minority health and cancer-related disparities among African Americans  Long term goal: use this knowledge to help African Americans in the Houston area reduce their risk for cancer and improve quality of life

 Prospective, longitudinal cohort study  Investigate the role of behavioral, social, and environmental factors on minority health and health disparities in cancer.  N= 1501 church members  Follow them for 2 years; 3 data collection points: ▪ Baseline ▪ 12 months ▪ 24 months

Demographics Cancer screening Lifestyle factors (FV consumption, PA, smoking history) Mental health (depression, stress) Neighborhood factors (social cohesion, neighborhood problems) Social factors (social support) Environmental exposures Health insurance Women’s health Health communications Job strain N=1501 participants (280 questions)

 Goal was to include as many persons as possible  Eligible:  Be age 18 and above  Must live in Houston area  Must have a working telephone number  Must attend church

 Individual compensation ($30 Visa debit card)  Health information, including mailed newsletters (4 per year)  $4000 annually to church  Limited patient navigation services  Church activities  Future benefits – grant dollars, additional collaborators

 Aim 1: Develop and organize a research collaboration with Windsor Village United Methodist Church to implement the African American Cancer Prevention Project;  Aim 2: Recruit and survey ~1501 church members to identify factors associated with cancer health disparities in African Americans and follow them for an additional 2 years;  Aim 3: Share research findings with the church community;  Aim 4: Provide referrals to the church community for health-related services;  Aim 5: Develop and evaluate interventions to improve cancer prevention among African Americans in Houston.

 Pastor Kirbyjon H. Caldwell  M.D. Anderson Board of Visitors  At least 4 meetings over 2 years – developing trust  Questions: ▪ How does this benefit the church body ▪ Why was Windsor Village selected ▪ Will the congregation get care at M.D. Anderson

 Community Advisory board  M.D. Anderson Department of Health Disparities Research faculty, church leaders, and church members.  Discussed study design  Assisted with recruitment procedures  Assisted with developed the questionnaire  Assisted with retention of participants  Met at least 6 times over the 1 st year  The advisory board identified challenges and barriers to implementing the study appropriately.  Engaged and meaningful participation; used CBPR principles  Goal to increase the relevance of the study to their members

 Project CHURCH Kick-Off  Pastor Caldwell introduced me to congregation and allowed me to speak  Health fair – recruited 500 participants in 1 day  Study telephone number and account  Video announcements during church services  Ushers handed out recruitment postcards  Icon and recruitment information included on church website

 Setting  We have paid/donated office space located at the church; participants complete the survey in this office  Anchors us to the church and the community

 Shared preliminary findings with Pastor Caldwell and Advisory board  Creating a booklet to share with participants and congregation  Decided not to share data publicly until church had data first

 We provide patient navigation services to Project CHURCH participants and the entire church  This year we are working with their cancer ministry to identify persons in need; we are also implementing an evaluation of our navigation services

Baseline (Year 1) Smoking Physical activity Mental health Year 2 Smoking cessation (2 times per year) Physical activity: Salsa class with cancer survivors Cancer support group Diet Mental health: Aromatherapy

 Work with church to develop interventions based on survey findings and/or bring other resources based on need

Internal Philanthropy $875,000 Houston Endowment $1M NIH (R21) $434,500 Grant with a Yellow Border is Pending Leveraging Project CHURCH African American Cancer Prevention Program

 Anecdotal; many reasons  Cancer family history  Service to God and mankind- doing something that will benefit others  Most did not even know they would be compensated  Many thought they had to give blood and still wanted to participate  Survey allowed us to work on building relationship first; now we can ask for more invasive tasks/procedures, i.e., DNA  Great customer service  Survey quick and easy

 Collect DNA - Saliva  95% participation rate  Accelerometer data (physical activity)  N=500 agreed to participate  Additional data  Financial strain  Living will  Rotating data

 Getting there...  Met accrual goals early – 6 months vs. 12 months  95% retention rate: Goal 70%  Received additional funding  Ongoing process…  Sharing findings with congregation  Long-term relationship ▪ Lots of trust, but still need to prove oneself

 Retention is closely linked to satisfaction  Begins with recruitment materials (non coercive), consent signing (need to understand the study and what is expected)  Treating participants with respect ▪ Great customer service  Communication between research staff ▪ Respond to complaints quickly  Attention to factors such as transportation etc. Source: Cheryl Oncken, M.D., MPH

 Communication with staff  Offer convenient physical access and appointment times  Newsletters  Provide written or telephone contacts between visits  Project CHURCH participants received notices about program activities first  Financial compensation  Above all—make it relevant!!! Source: Retention of asthmatic patients in a longitudinal clinical trial

 Study population and setting should be appropriate for the research question being asked  Recruitment methods can be very effective; need to be prepared for response  Individual financial compensation is not enough of a benefit – need to make a connection to a value  Long-term commitment

 Windsor Village pastor, congregation, advisory board  Project CHURCH staff  Health Disparities research faculty