JMIR Publications

ABSTRACT

Background:

Women with or at high risk of diabetes have unique health concerns across the life course. To inform a patient-centered research agenda to improve health outcomes among women with diabetes, it is important to develop methods for patient engagement.

Objective:

1) Describe the creation of the online patient community for women; 2) Describe the feasibility and acceptability of the online patient community for women living with and at risk for diabetes; 2) Test its feasibility and acceptability for engaging them about healthcare and research priorities.

Methods:

We partnered with a national organization for women with diabetes to create the online community called DiabetesSistersVoices and develop recruitment strategies, including social media, online newsletters, and links placed on partnering organizations’ websites. Women were enrolled in the study and provided access to DSV if they were 18 years, lived in the US and reported a diagnosis of diabetes or risk of diabetes. They completed online surveys at enrollment and 6 months. We assessed trends in participants’ activities, including posting questions, sharing experiences about living with diabetes and using “search tool” for educational resources.

Results:

We enrolled 332 women (White: 86.5%; type 1: 76.2%) over 8 months. The mean age was 49 years old (SD 13.8) and the majority (76.2%) had type 1 diabetes (vs. 22.0% with type 2 diabetes). 22.3% were classified as “never users” (i.e. completed baseline surveys but then never logged in), 36.1% as “observers” (logged in, no posts) and 41.6% as “active users” (posting online). Compared to “never users”, “observers” and “active users” were more likely to use email daily (93.3% and 91.3% vs. 82.2%), and use social networking site (93.2% and 90.0% vs. 84.7%).

Conclusions:

We demonstrated the feasibility of creating and using the DiabetesSistersVoices online patient community to engage women living with diabetes by showing constant recruitment and online usage over 6 months of testing. Next steps to grow the community are to identify and address barriers to joining an online community for women of color and women with type 2 diabetes or women with diabetes risk factors (e.g. history of gestational diabetes) to have broader and more diverse perspectives.