Minority community wants long-term commitment from clinical researchers
This includes sending them the results
A coordinator who was the most successful nationally in recruiting African Americans for a clinical trial involving the study of drugs to prevent breast cancer, says that long-term trust can only be achieved with a long-term commitment.
The key to recruiting minorities, especially when there will be additional studies over time is to build relationships, partnerships, and trust, says Melinda D. Hudson, RN, CCRC, CCRP, clinical outreach coordinator with Spartanburg Regional Medical Center in Spartanburg, SC. Hudson received accolades for her success at the Upstate Carolina Community Clinical Oncology Program (UC-CCOP) in recruiting African American women to the Study of Tamoxifen and Raloxifene (STAR), which was a national, multisite trial.
"Say I was to pull out of the community after the study and have no more representation in the community, then the mistrust starts all over again," Hudson explains. "You don't want to exploit the African American community through research trials and then take representation away."
This long-term commitment includes letting participants know the results of a study after it's completed.
When the STAR trial's results were available, the site let participants know the results by sending each woman a letter that explained the results, Hudson says.
The letter explained whether the woman was taking a drug or placebo in the trial, as well.
Although the STAR enrollment stopped last year, Hudson remains available to women as a health care outreach worker and educator.
Soon there will be another study involving breast cancer, but it will not be open to the same participants, so Hudson's work will continue both with follow-up involving STAR participants and with recruiting for the new study.
Time and funding are crucial to successful enrollment of clinical trials, but it's equally important that clinical research coordinators be committed to the cause, Hudson says.
"I tell people I ate and slept STAR the entire time it was enrolling," Hudson says. "I totally committed myself to the community for this trial: they could reach me at home at night, and on weekends I'd do community sessions, going to churches to speak."
Hudson's dedication was grounded in both personal and professional inspiration. She had witnessed her family's grief and devastation when her brother-in-law died of colon cancer at age 28, and she wanted to contribute to medical knowledge so that such tragedies could be prevented.
"I saw in the STAR trial a population of African American women who didn't have a high incidence of breast cancer, but had a death rate that was high," Hudson says. "So these women needed not just clinical trials, but also education empowerment against this disease, and that was my driving force."
Hudson says her commitment to the work was reinforced as she met with women participants and heard their stories.
For example, she recruited four sisters from one family, and they each expressed their fear of breast cancer because of having a family history in which virtually every female member developed breast cancer, Hudson recalls.
"We recruited all four women, and that was a personal commitment for me," she says.
"Because of the work I did for the first two to three years here in our community, I now have women calling me to ask, 'When is the next breast cancer study going to be ready?'" Hudson says. "There's a higher educational level in our community about clinical trials, and the fear is not as extreme as it was."