Lorna H. McNeill, PhD, MPHAssistant Professor, Department of Health Disparities ResearchUniversity of Texas M.D. Anderson Cancer Center

Cancer-related health disparities Project CHURCH aims and study

designLessons learned

Cancer-related health disparities Cancer is the 2nd 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 fundingDevelop 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

Creating a Higher Understanding of

Cancer Research and Community Health 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

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 churchLimited patient navigation servicesChurch activitiesFuture 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 1st 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 email 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

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

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 staffHealth Disparities research faculty