DiabetesSistersVoices is an online community for women living with diabetes, where they can ask questions, share experiences and search for resources.
We created the DiabetesSistersVoices through a collaboration between DiabetesSisters, The Johns Hopkins University, The University of North Carolina, TrustNetMD and our Stakeholder Advisory Board of women and diabetes advocates.
The voices from this community have been helping researchers to understand what health topics are most important to women living with or at risk of diabetes, and what types of research is needed to improve the health and health care of women living with diabetes.
Your voice in this community will help researchers to understand what health topics are most important to women like you, and what types of research is needed to improve the health and health care of women living with diabetes.
What is the goal of this project?
The project has provided 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.
What does it mean to provide input about research and healthcare?
Engagement in research refers to the meaningful involvement of patients, clinicians and other stakeholders. Patients and patient advocacy organizations can be involved at various stages of research, such as:
- Selecting research topics,
- Choosing the best ways to design studies,
- Participating in the conduct of the study, and
- Figuring out how to get the results out to others to ultimately change patient care and practices.
Our project was funded by the Patient Centered Outcomes Research Institute (PCORI) which believes that patient engagement can influence research to be more patient-centered (research on topics important to patients), which can lead to results that are more trustworthy by the public and will have greater use and acceptance by patients and the broader healthcare community.
Where are the opportunities to be involved in this project?
Members of the community come from diverse groups of women with any kind of diabetes (rural/urban, diverse racial and ethnic backgrounds, diverse incomes, all ages) to join the site and engage with us and others about what questions are important for researchers to address to take better care of them and their families.
Participation in the online community has informed The Patient-Centered Women’s Health and Diabetes Report - for our patients, policy-makers, advocates, researchers, clinicians and other groups to better understand what priorities in research should be.