Diabetes Health Type 1: DiabetesSisters gets members involved in research initiative

DiabetesSisters was formed in 2008 as a way to help women share information about diabetes and learn from each other’s experiences.
Now the organization is taking an exciting step forward in inviting its members to work with doctors and scientists on research projects – not as human guinea pigs, but rather to help shape what topics they should be studying in the first place.

 

“The idea is to draw in women to actively participate in dialogue with researchers,” said DiabetesSisters CEO Anna Norton. “They will actually be helping to drive research” on issues that women with diabetes care about most.

 

The project, which is taking the shape of an online community at DabetesSistersVoices.org, is funded by the Patient Centered Outcomes Research Institute and includes researchers from  Johns Hopkins University and the University of North Carolina at Chapel Hill. The goal is to get 500 women age 18 and older to participate; as of late January, Norton said, they were halfway there.
Norton said the site is a safe place for women to ask questions about what bothers them most about their diabetes experience. They needn’t stick to medical concerns; social and emotional issues are also fair game.
The organization plans to generate a report on the project, not unlike a 2015 white paper called “Women & Diabetes: 10 Relevant Health Topics for Women Living with Diabetes.” That report, a collaboration with the Society for Women’s Health Research and available online at diabetessisters.org, tackles issues ranging from how estrogen influences glucose control to sex differences in the effectiveness in certain drugs.
Norton said the organization continues to work toward expanding the diversity of its membership, which is especially important given the explosive growth of type 2 diabetes in minority communities. Currently the majority of members tend to be white women with type 1 diabetes.
One project has been seminars in African-American communities in the Washington D.C. area, which have included, for example, a class on how to prepare a healthy Thanksgiving meal. This year Norton hopes to reach out to Spanish-speaking women in the South Florida region, where the organization has distributed brochures in Spanish.
“We’re trying to get the attention of women in different ways,” Norton says, citing access points such as educational webinars and support groups that meet both online and in communities across the nation.
DiabetesSisters is also reviving its national conference this year, with a Weekend for Women scheduled Oct. 13-15 in Alexandria, Va. Norton says there are four educational tracks available: one on women’s issues, one on general diabetes education, one for caregivers and a fourth track which will be an “untethered” option called the “un-conference, which will be peer-driven rather than led by experts. Participants themselves will choose the topics to be discussed shortly before the conference.
“It’s a really different model, and it works,” Norton said. “It’s never the same.”


Registration begins in February and continues through the end of September; the $149 fee includes meals. For more information, see diabetessisters.org.  

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