African American Women's Perceptions and Attitudes Regarding Participation in Medical Research: The Mayo Clinic/The Links, Incorporated Partnership

Abstract

Objective: To examine perceptions and attitudes toward health-related research participation among professional African American women. Methods: Participants were members of an African American women's service organization, The Links, Incorporated. Data were collected via self-administered questionnaires at The Links, Incorporated 2012 National Assembly. Sociodemographics, prior research experience, intention to participate (ITP), willingness to participate (WTP) in a variety of research studies and attitudes about research participation were measured.

Fostering African-American Improvement in Total Health (FAITH!): An Application of the American Heart Association’s Life’s Simple 7™ among Midwestern African-Americans

“…After informed consent, we collected sociodemographic information, self-reported health history, health status, and barriers towards leading a healthy lifestyle [29]. Additional assessments included the following: program evaluation, the role of religious/spiritual beliefs and wellness on health [30], and the importance of academic-community partnerships and research participation perceptions [31]. Participant attendance was recorded at each education session by the study team.…”

Prevalent Health Concerns Among African American Women Belonging to a National Volunteer Service Organization (The Links, Incorporated)

“…Over 63% of respondents reported an annual household income of $100,000 or greater. Additional details regarding the sample are reported elsewhere [16, 17]. …”

“…The difference in percent concerned between self/family and community was largest for lung cancer, COPD, sickle cell anemia, lupus, and tobacco use. This may reflect a combination of the good health status of our sample [17] and knowledge among this educated group of women that sickle cell anemia and lupus are commonly diagnosed in African Americans.…”

“…Informed consent was obtained from all individual participants included in the study. Specific procedures surrounding the development and distribution of the survey have been previously described [16, 17]. Briefly, data were gathered through a cross-sectional, self-administered survey made available to over 2,000 registrants at the 2012 Links National Assembly.…”

Willingness to Participate in Cardiovascular Clinical Research among African- Americans

“…Attitudes may also have changed among well-educated AA. One study found generally favourable opinions of clinical trials and high willingness to participate among college-educated AA women [9]. Nevertheless, in a review of 445 Gynecologic Oncology Group studies conducted between 1985 and 2013, AA enrollment was 2.8 times lower between the years 2009–2013 as compared to years 1994–2002 (16% vs 5.8%, respectively; p<0.01), suggesting that AA continue to be underrepresented in many clinical trials despite recent interventions [1].…”