Black Women Advise Scientists How to Engage Them in Research
Focus groups of Black women informed scientists about what turns them off about health and medical research and how to get them to participate.
We need health research about Black women, and we are already years and years behind. For generations, population-based studies and clinical trials have not equally included Black women. Without those studies, we don’t know how a Black woman’s unique physiology, genes, and environment affects her risk for developing a disease or her likelihood of responding well to treatment.
Other multicultural?populations have also been left out of investigations, but the need to better understand diseases in Black women deserves priority. Compared to White women significant health inequities persist among Black women.
- Black women have shorter life expectancies.
- Black women are more likely to die during childbirth.
- Black women have among the greatest poverty rates in the United States.
- Black women are more likely to develop heart disease, obesity, and some cancers.
- Breast cancer is the leading cause of death for Black women
Researchers at the American Cancer Society (张译丹不雅视频流出) are committed to changing these statistics by partnering with 100,000 Black woman across the United States to take part in a long-term research project.?
Senior Vice President of the 张译丹不雅视频流出 Population Science team and senior scientist of the study, Alpa Patel, PhD, MPH, says,?“Right out of the gate, you’re not going to have people just say ‘sure, I’ll be in a decades long study.’ There is a foundation that has to be built.”
“Everyone (scientists) is contending with how to make our clinical trials and observational studies more diverse and representative of US populations. This is a question we all have to solve. Our focus group findings are broadly applicable and may give scientists a head start in studying other chronic diseases that affect Black women,” says Lauren McCullough, PhD, MSPH, visiting scientific director in 张译丹不雅视频流出 Population Science and one of the study authors.
In a day-long community meeting hosted by third-party expert administrators, the volunteer focus group participants answered questions about the challenges and opportunities for research participation among Black Women. 张译丹不雅视频流出 Population Science researchers identified 4 themes about the specific barriers Black women say would strongly influence their decision about whether to participate in research. Those themes were lack of empathy from medical providers, mistrust of medical research, uneasiness about sharing personal data, and concern about logistical and technical issues. The researchers ?in the 张译丹不雅视频流出 peer-reviewed medical journal Cancer.
Barrier #1: Lack of empathy and discrimination from medical providers.
In health care settings, Black women often feel dehumanized—unheard and disbelieved. White doctors and other White health care providers, in particular, were perceived as not approaching Black women with empathy or respect and were perceived as more likely to ignore a Black woman’s symptoms.
Focus group discussions suggested that Black women were more likely to participate in research when doctors display empathy and when the research team is ethnically diverse and knowledgeable, with experience in engaging trusted community partners.
“What I’d most like our colleagues in the scientific research and medical domains to take away and use from the focus group study is to treat and remind study participants and partners that what they say and contribute has value and worth,” Dr. McCullough says.?
Barrier #2: Long-held mistrust of medical research.
Many Black women may have an instilled mistrust of medical research due to exploitative, unethical, and abusive research in US History. Here are 3 ?examples: Tuskegee?Untreated Syphilis Study on Black men from 1932 to 1972, the use of Henrietta Lacks’ cell line for over 70 years without her knowledge or compensation, and the experimental dermatology clinical trials using radioactive substances and known poisons on Black men from the Philadelphia Holmesburg Prison from the early 1950s through the mid1970s.
Focus group participants agreed that they would be more inclined to participate when researchers communicated their intentions, shared their depth of knowledge and expertise, and kept participants up to date with research achievements beyond a link to a scientific paper.
Researchers can start building trust with the launch of a study’s recruitment stage.?One way to begin is by acknowledging and validating?that Black people have been historically taken advantage of and, even now, some scientists just get what they want and leave.
“There are several justifiable reasons for Black women to mistrust research and medical communities,” Dr. Patel says. “We have to consider, ‘how do we make ourselves trustworthy?’ I do think that by making ourselves trustworthy, we more broadly, not directly, start to change the larger ecosystem.”
“Trust is not given, it’s earned,” Dr. McCullough agrees. “It’s work.” A lot of times scientists are so excited by the research, she says, that “we forget that we can’t just swoop into communities and expect them to automatically trust us.”
Barrier #3: Uneasiness about sharing personal data.
Black women in the focus groups expressed apprehension about sharing personal data, especially if they weren’t told how their data would be used and kept confidential. They also feared judgement and scrutiny.
The women were even more reluctant to donate biological samples, like blood, unless there was a high level of transparency about how researchers would use the samples.?
Barrier #4: Concern about logistical and technical issues.
Focus group participants mentioned many of the practicalities that could discourage them from agreeing to be in a study, including the time commitment and expectation that all women would have access to, and the skills to navigate, electronic surveys and information on the web.
More than once, they talked about researchers being cognizant and respectful of their time.?
The women also suggested that support for transportation, elder care, and childcare during research participation would allow more women to meaningfully engage.
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