Many women aren't aware of the benefits from their participation in clinical research. According to a recent survey by the Society for Women's Health Research, only 9 percent of women have ever participated in a medical research study.
Peter Schmidt, M.D., a clinician and investigator at the National Institute of Mental Health (NIMH), and his team are facing the challenge of declining numbers of women volunteering to participate in their studies, especially those trials investigating postpartum depression (PPD) and midlife perimenopausal depression.
When the NIMH midlife clinic began in Bethesda, Md., in 1989, a newspaper article announced the opening of this program and asked women to volunteer. "We received 300 phone calls and couldn't keep up with calling them back," Schmidt said. "Now we only get a handful of calls each month."
Three members of Schmidt's team, a social worker, a nurse and another physician, have tried several methods to recruit volunteers for their studies.
"One time we advertised our PPD studies on daytime cable TV," said Annie Shellswick, M.S.W., the social worker on Schmidt's team and the first point of contact for potential study participants. "I thought for sure we would reach the right audience. I was so disappointed when I got so few calls in response to the ad."
"We find there is a lot of misinformation about clinical research out there," Schmidt said. "We always have a very positive response from women who have participated in our studies. We just need help getting the volunteers, both patients and healthy volunteers."
Sometimes they end up getting their message out to potential volunteers in the most unlikely places, according to Karla Thompson, R.N. "One day after work I stopped at the grocery store," she said. "I still had my NIH badge on and someone stopped me and asked 'Do you work at that place where they do all that research?' I took the opportunity to educate that woman about clinical trials."
Schmidt and his team credit much of their success with volunteer satisfaction to Thompson. She has been very active in the program's outreach effort to minority communities. Thompson believes it is important to make strong connections with her patients. In turn, these women go out, share their positive experiences and recruit other women. This personal approach has been particularly helpful. Many people respond more positively to word-of-mouth communication than to advertising, mailings, or brochures.
One barrier Schmidt faces when recruiting patients for the PPD studies is the negative social stigma attached to these conditions. Thompson says most of the new mothers who come into the clinic feel guilty about being depressed. "You need to be well for your baby to be well," she tells them, assuring them that they are taking the right step in seeking treatment.
Pedro Martinez, M.D., is one of three physicians on the team. "I've done a lot of outreach within the Hispanic community," he said. "It's unfortunate. A lot of people don't even know this research exists or that they have access to it."
Martinez has also done a lot of outreach to obstetricians and pediatricians, asking them to refer all new mothers to their PPD studies. Surprisingly, these efforts, which seem like such a natural fit, have little to no success. "You would think it would be easy for the maternity wards to give every new mom a pamphlet on our studies," Martinez said, "but it's one more step for them. They're busy."
According to the Society for Women's Health Research survey, 93 percent of women said their doctor has never talked with them about participating in a medical research study.
Of the few women have ever taken part in a medical research study, most were motivated by a desire to help advance medicine or science.
This was the case for one anonymous healthy volunteer. A 23 years-old graduate student at George Washington University in Washington, D.C., learned about the opportunity to participate in a clinical trial through a newspaper advertisement. She is now enrolled in a six-month study with Schmidt.
"I wanted to help future women who may deal with this condition. I felt really comfortable with Dr. Schmidt and his team," she said. When asked if she speaks openly about participating, she said, "I've only told a handful of friends who understand the necessity of medical research."
The Society for Women's Health Research was founded in 1990 to bring national attention to the need for the appropriate inclusion of women in major medical research studies. Before the Society was established, women were excluded from most major studies. The situation has improved greatly over the last 15 years, but there are still obstacles to getting women enrolled and retained in research studies.
The Society has a public education campaign called "Some Things Only a Woman Can Do," which provides women with information about volunteering for medical research. Information in both English and Spanish is available on the campaign Web site: http://www.womancando.org.
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