While we're on a roll updating you all about the activities of various advocacy orgs, here's another one we're excited about: the national women's diabetes group DiabetesSisters is launching a new project to open a direct line of communication between patients and researchers to improve diabetes clinical trials.
This is a much-needed effort, as the patient community has been pointing out for years that clinical trials aren't traditionally designed with us -- the people actually living with diabetes -- in mind; these studies simply don't reflect the realities of life with diabetes, which of course diminishes their usefulness.
A few attempts to tackle this problem to date include some interesting university projects, the emerging crowdsourcing platform VitalCrowd, and of course work by PCORI (the Patient-Centered Outcomes Research Institute).
The latter is actually involved in helping DiabetesSisters, a community 13,000 strong, to build out their new DiabetesSistersVoices program launched late last year to help improve the diabetes research universe specifically for women with D.
Here's what we've learned about their new Voices project...
DM) First off, who's involved and paying for this research input project?
DS) This is a collaboration between DiabetesSisters, Johns Hopkins University, University of North Carolina, TrustNetMD and the D-Sisters' Stakeholder Advisory Board of women and diabetes advocates. This project was funded through an engagement award from the Patient-Centered Outcomes Research Institute (PCORI), and also involved with recruiting and website development are PatientsLikeMe, Black Women's Health Initiative, National Association of Hispanic Nurses, and Society for Women's Health Research.
What form does the 'DiabetesSistersVoices' program actually take?
It's an online community for women living with, or at risk of, diabetes. When members log in, they can ask questions, share experiences and search for resources. Specifically, the voices in this community will help researchers to better understand what health topics are most important, and what types of research are needed to improve the health and care of women living with diabetes.
What is the goal?
To provide an interactive, engaging website for women with diabetes where they can discuss what is important for improving their health and well-being in order to better guide the research community. We're currently half way to our goal of 500 registered participants.
How will that information be used?
We will be collecting collecting top research and health care questions for a final report, The Patient-Centered Women’s Health and Diabetes 10Q. This report is expected in late 2017, aimed at helping policy-makers, advocates, researchers, clinicians and other groups to better understand what priorities in research should be.
Is there also an interactive component among participants?
The online conversations are all kept confidential, and we are seeing a theme of social and emotional questions and shared resources. So yes, there is lots of storytelling, which is one of the best ways we can learn from one another.
Who can participate?
If you are an adult female in the United States who's been diagnosed with type 1, type 2, prediabetes or gestational diabetes, you are eligible to participate in this study. At this time it's only open to those living in the States. Enrollment is encouraged by the end of February, even though technically the project goes through May 2017. After registering on the DiabetesSistersVoices site, you'll be asked to complete screening and fill out an online consent form and survey.
Our goal is 500 women, but the more the better -- the richer the data will be.
So to be clear: it's for women only...?
Yes, that is correct. Though arguably, you can make the case that it's for everyone because these are our sisters, mothers, daughters, wives, cousins, friends, etc. And since we are a community and it takes a village... you get the point.
Sounds like a great project! We're happy to spread the good word, and are anxious to see what materializes from the eventual final report.