More than 60 percent of women 50 and older who have participated in a medical research study would definitely or probably participate again if given the opportunity, according to a survey released today by the Society for Women’s Health Research, a Washington, D.C., based national advocacy organization. The survey also found a growing percentage of women is not interested in research or does not believe in participating in it.
“It is encouraging that most women who have participated in research would consider taking part in another study,” said Phyllis Greenberger, MSW, president and CEO of the Society. “This reflects the positive experiences women have had. It also indicates that participating is not overly burdensome, which is something a lot of people worry about.”
Ten percent of women 50 and older have participated in a medical research study, according to the survey. That finding is consistent with an identical survey conducted by the Society in 2003.
One area of notable change between the 2006 and 2003 surveys is the leading reason why women are hesitant to participate in medical research. The most common response, given by 15.9 percent, is that they are “just not interested in it” or “don’t believe in it.” Only 9.1 percent of respondents cited this reason in 2003, when it ranked fourth. Other primary reasons given by women for being hesitant to participate include: it is too risky (15.8%), they do not have the time (14.8%), and it depends on the type of study (13.8%).
“We were surprised to see a jump in the percentage of women who are not interested in research or don’t see the value of participating,” Greenberger said. “All of us in the health professions must do a better job of communicating the importance of research and the crucial role volunteer participants play in the study of disease and the development of treatments. We’ve made great advances in women’s health over the last 15 years, but much work remains to be done and each of us can play a role, whether we are sick or healthy.”
The Society released the survey results today during “Sex Differences in Health Awareness Day,” a national health observance that draws attention to the need for more research into how diseases and treatments affect women and men differently. The survey of 1,014 women 50 and older was conducted by International Communications Research of Media, Pa., April 11-27, through a telephone survey.
“As the number of older Americans grows and life expectancy for women increases, sex and gender specific information about disease prevention, diagnosis and treatment will be essential for the health of this population,” Greenberger said. “We hope this survey reminds the public of the vital role research plays in advancing care.”
Through a campaign called “Some Things Only a Woman Can Do,” the Society for Women’s Health Research provides women information about participating in clinical trials research. With a Web site - WomanCanDo.org - and toll free hotline, 1-877-332-2636, the Society provides materials in both English and Spanish, as well as tailored information for older and minority audiences.
The Society’s new book for consumers, “The Savvy Woman Patient: How and Why Sex Differences Affect Your Health,” features a chapter on participating in medical research studies. The chapter includes the story of Ithaca, N.Y., resident Meredith Small, who volunteered for a study on Interstitial cystitis, a painful condition that causes inflation in the bladder and for which there is no cure and few options for treatment.
Small recognizes the necessity of humans volunteering for medical research: “Those of use who have offered our bodies up to science understand that testing on human subjects is the only way that medicine can go forward. Lab work and animal tests can only go so far in trying to predict what works.”
“Meredith Small is one of millions of American women, who suffers from a medical condition that is often misdiagnosed or for which there are few effective treatments,” Greenberger said. “It is only through research that we can improve care. Thanks to courageous and selfless women, we are making progress. I hope their stories inspire other women to volunteer.”
It is especially important for women 65 and older to participate in medical research, Greenberger added.
“People over age 65 make up 20 percent of our country’s population,” Greenberger said. “Of that segment, women in general are living longer lives, but not necessarily high quality or better ones. Older women are plagued with higher rates of chronic illnesses such as heart disease and diabetes. Yet much of what we know about those diseases has come from studies of men younger than 70.”
Society for Women’s Health Research (SWHR)
Revision date: June 14, 2011
Last revised: by Sebastian Scheller, MD, ScD