Improving Health Disparities in the African-American Community

by Educating Pastors and Local Churches on the Risks and Benefits of Clinical Research

June 16, 2012Walden University

Capstone (CLRA-6560-1)Jerome Q. Kinard

It is critical that we increase the enrollment rate of African-Americans participating in clinical research. African-Americans respond much differently to treatments than other groups (Martin, 2010). The African-American church has historically been an agent of social change throughout our nation’s history (Levin, 1984). One solution to changing the lack of participation of African-Americans in clinical research is to educate local pastors and churches on the risk and benefits of clinical research particularly as it relates to the Belmont Report.

Introduction

48% of African-American adults are experiencing some kind of chronic disease whereas among the general population the number is 39% (HealthReform.gov, 2012).

70% of African-Americans between the ages of 18 and 64 are either overweight or obese (HealthReform.gov, 2012).

African-American men compared to white men are 50% more likely to suffer from prostate cancer (HealthReform.gov, 2012).

15% of African-American adults suffer from Type II diabetes whereas the disease rate among white Americans is 8% (HealthReform.gov, 2012).

African-Americans are 7 times more likely to contract HIV than white Americans (HealthReform.gov, 2012).

Current Problem

308.7 million people living in the United States (Rastogi et al., 2011).

Those who identify as being Black or African-American equals 38.9 million (Rastogi et al., 2011).

Another 3.1 million identifying themselves as Black/African-American and of another racial group (Rastogi et al., 2011).

Combined total of those who identify themselves as African-Americans at 42 million (Rastogi et al., 2011).

Population/Area of Focus

The Primary Obstacle Preventing African-

Americans from Participating in Clinical

Research is Mistrust of the Clinical Research

Enterprise

U.S. Public Health Service sponsored a study in collaboration with the Tuskegee Institute in 1932 (CDC, 2011).

Recorded the natural progression of syphilis in an attempt to justify a treatment program for Blacks (CDC, 2011).

600 African-American men in the initial study 399 had the disease and 201 did not (CDC, 2011) Intended to last only 6 months, but, in actuality, lasted 40

years (CDC, 2011) Subjects did not have the benefit of informed consent

(CDC, 2011) Lied to by investigators after being told that they were

receiving treatment for “bad blood” (CDC, 2011)

Tuskegee Syphilis Experiment

U.S. Supreme Court’s legally sanctions practice of eugenics in 1927 (Ostendorff, 2012).

North Carolina Eugenics Board’s primary goal was to get rid of poverty, addiction, and crime (Kickler, 2012).

North Carolina social workers were granted power to recommend sterilization to the Eugenics Board any person deemed undesirable (Kickler, 2012).

The number of North Carolinas intended for sterilization were disproportionately African-American (Kickler, 2012).

NC Eugenics Programs

1927 Segregated Lyles Station, Indiana (Reese, 2011) At age 5, given excessive radiation treatment by

healthcare workers (Reese, 2011) Slow dissolution of bone manner in his skull throughout

his life (Reese, 2011)

Vertus Hardimann

Education is the Key to Changing the Attitude of

Mistrust

There are several ways that we can educate individuals and families on the risks and benefits of clinical research. For example, physician-investigators who already have established relationships of trust can educate their patients, particularly, on clinical research being conducted where they live. Patients are more inclined to participate in a clinical trial recommended by their doctor than they are in response to an ad posted on Craigslist.com recruiting patients from someone that they do not know.

Educating Individuals and Families

Partnering with Historically Black Colleges and Universities (HBCUs) to serve as clinical trial sites (HBCU Direct, 2012)

Doris Duke Clinical Research Experience for High School Students (CREHSS)◦ Grant program where African-American high

school students are exposed to clinical research activities in hopes of encouraging minority students to choose careers in biomedical research (Doris Duke Charitable Foundation, 2010).

Educating Local Schools & Colleges

Primary focus should be on educating pastors and local churches on the risks and benefits of clinical research

The African-American Church historically has held a place of great significance within the African-American community (Levin, 1984)

Significant influence on the African-American community (Levin, 1984)

African-American pastors are often viewed as more than just preachers many also serve as educators, politicians, and business people (Levin, 1984)

Educating Pastors and Local Churches

Develop Partnerships with Houses of Worship to Educate Pastors and Their Parishioners

In 1974, the U.S. Congress passed the National Research Act, in reaction to the injustices of the Tuskegee Syphilis Experiment (Zimmerman, 1997).

Eleven men and women were appointed by the U.S. Congress to the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Subjects whose task was to establish some basic rules and guidelines for the ethical treatment and protection of human subjects (Zimmerman, 1997).

In 1979, the commission published what is considered in the U.S. the primary ethical guideline for the conduct of clinical research: The Belmont Report (Zmmerman, 1997).

History of the Belmont Report

Respect for persons Beneficence Justice

Basic Ethical Principles of the Belmont Report

Application of respect for persons can be seen in the application of informed consent (NIH Office of Extramural Research, 2011)

Application of the ethical principle of beneficence can be seen in the use of Institutional Review Boards (IRBs) (NIH Office of Extramural Research, 2011)

Application of the ethical principle of justice can be seen in the recruitment of research subjects (NIH Office of Extramural Research, 2011).

Application of the Belmont Report

Encourage Pastors to See Clinical Research as an

Opportunity to Provide a Ministry to Their Church

and Community

Show pastors that their churches can serve as a resource center by partnering with local investigators to provide informational classes on clinical trials that they are currently recruiting for.

Clinical Research Provides Healthcare to People with Limited Access

Show pastors that by educating their parishioners on the risks and benefits of clinical research that they are helping to eliminate the health disparities that exists within the African-American community.

For example, Lawndale Community Church in Chicago offers primary care services without regard to income and it serves as a resource to help eliminate health disparities that exist between African-Americans and those of the general population (Lawndale Christian Health Center, n.d.).

Clinical Research Helps Eliminate Health Disparities

The number 1 cause of death within the African-American community is heart disease (CDC, 2010).

Show pastors that the biggest threat to the African-American community is heart disease and that encouraging them to educate their parishioners on the risks and benefits of clinical research may help save lives of those living in their communities.

Clinical Research Helps Saves Lives

Partner with Local Churches to Encourage African-American

Youth to Pursue Post-Secondary Educational

Opportunities in Clinical Research

Investigators Clinical Research

Associates/Coordinators Clinical Data Managers

Encourage Youth in Local Churches to Pursue Clinical Research Careers

Several strategies can be and are being employed to narrow the gap between African-Americans and the general population. One of the most effective strategies would be to enlist local pastors and churches to get involved by educating them on the risks and benefits of clinical research, particularly as it relates to the Belmont Report.

Conclusion

Center for Disease Control and Prevention (CDC). (2011). U.S. Public Health Service Syphilis Study at Tuskegee. Retrieved May 30, 2012 from http://www.cdc.gov/tuskegee/timeline.htm

HealthReform.gov. (2012). Health Disparities: A Case for Closing the Gap. Retrieved May 28, 2012 from http://www.healthreform.gov/reports/healthdisparities/

Kickler, T. (2012). North Carolina History Project: Compensation for Victims of Eugenics Gains Notice. Retrieved June 2, 2012 from http://www.northcarolinahistory.org/commentary/683/entry

Levin, J. (1984). The Role of the Black Church in Community Medicine. Retrieved May 8, 2012 from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2561772/pdf/jnma00239-0055.pdf

References

Martin, P. (2010). Part 1: Long After Tuskegee, Blacks Still Leary of Clinical Trials. Retrieved May 9, 2012 from http://www.blackvoicenews.com/news/news-wire/44950-part-i-long-after-tuskegee-blacks-still-leary-of-clinical-trials.html

Rastogi, S., Johnson, T., Hoeffel, E., & Drewery, M. (2011). The Black Population: 2010. Retrieved May 28, 2012 from http://www.census.gov/prod/cen2010/briefs/c2010br-06.pdf

Doris Duke Charitable Foundation. (2010). Clinical Research Experiences for High School Students. Retrieved June 7, 2012 from http://www.ddcf.org/Medical-Research/Program-Strategies/Clinical-Research/Clinical-Research-Experiences-for-High-School-Students/

HBCU Direct. (2012). Health Disparities Initiative. Retrieved June 7, 2012 from http://www.hbcudirect.com/index.php?option=com_content&task=view&id=4&Itemid=6

References Cont’d

Center for Disease Control and Prevention (CDC). (2010). Black or African-American Populations. Retrieved May 1, 2012 from http://www.cdc.gov/omhd/Populations/BAA/BAA.htm

Lawndale Christian Health Center. (No Date). Lawndale Christian Health Center: Helping God, Helping People. Retrieve June 11, 2012 from http://www.lawndale.org/

Ostendorff, J. (2012). N.C. may compensate sterilization victims. Retrieved June 1, 2012 from http://www.usatoday.com/news/nation/story/2012-05-22/sterilization-compensation-north-carolina/55173250/1

Reese, G. (2011). Radiation and the young: like sheep to slaughter. Retrieved June 2, 2012 from http://www.ourweekly.com/features/radiation-and-young-sheep-slaughter

References Cont’d

National Institutes of Health (NIH) Office of Extramural Research. (2011). Protecting Human Research Participants. Retrieved June 3, 2012 from http://phrp.nihtraining.com/users/PHRP.pdf

Zimmerman, J. (1997). The Belmont Report: An Ethical Framework for Protecting Research Subjects. Retrieve May 12, 2012 from http://www.impactcg.com/docs/BelmontReport.pdf

References Cont’d