Courtesy: Medill Reports Chicago
Most of what we know about medicine is based on studies done primarily on men. So where does that leave women?
The Institute for Women’s Health Research at Northwestern University is paving the way for discoveries impacting women’s health issues in the state of Illinois.
Sarah Bristol-Gould, director of the Illinois Women’s Health Registry, said they are trying to conquer the many unanswered questions pertaining to women’s health.
“As an institute we’re really trying make this institution aware of the dangers of doing sex and gender-based research,” Bristol-Gould said. “We focus on the women because numerous studies have shown that it’s harder to get women to participate in studies than men.”
The statewide Women’s Health Registry was started in March 2008 to help answer the crucial questions in science and improve the well being of women statewide and eventually throughout the country. So far, almost 4,000 women have signed up.
The registry is a database of self-reported health information provided by women who complete the survey, either online or on a paper copy. Their answers go into a secure server, and when a new study or clinical trial is looking for participants, the women are linked up with the appropriate research study and have the choice to participate.
A researcher at the University of Michigan began the first women’s health registry in 1999 and later moved to the University of Kentucky with an opportunity to create the first statewide women’s registry. Data collection began in Kentucky in the spring of 2005. Northwestern adopted the idea for Illinois three years later. As it stands, these are the only two women’s health registries in the country.
Mary Johnson, the director of the Kentucky Women’s Health Registry, said that the goal is to add 2,500 women of all ages and demographics every year to the 11,000 already participating.
“Unfortunately Kentucky leads the nation in all the bad things, like lung cancer rates and heart disease rates,” Johnson said. “We’re not on top of the obesity race, but we’re getting there.”
Bristol-Gould and Johnson agree that getting the word out about the importance and need for women’s health research and recruiting women to participate in the registries has been the most challenging part.
“More traditional marketing techniques just didn’t work for us,” Bristol-Gould said. “Our IT staff told us to try the social networking so finally we’ve done a lot of that and it seems to be giving us the biggest bump.”
The registry’s Facebook page has a growing fan-base and e-mails sent to those women already signed up, are bringing them more participants by the day.
“The best thing to do with 11,000 people in the registry is to send out emails and ask them to get three friends to join,” Johnson said. “They’ve responded really well to that and they’re recruiting within themselves.”
“People are really more inclined to do it if they hear about it from a family or friend,” Bristol-Gould said. “Women who are already participating see the value in it.”
Eventually the goal for the Illinois registry is to expand beyond research at Northwestern to include all eligible Illinois female residents. “We’re focusing on Northwestern now because we’re here but we really need to branch out throughout the entire states and get other universities and other hospitals involved,” Bristol-Gould said.
As more women participate in registries like this one and are used in research studies on different diseases and treatments, finding answers to difficult health questions will become a reality.
- Tina Amirkiai
