Abstract
Background: Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. Objective: This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. Methods: We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ≥18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants' activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. Results: We enrolled 332 women (white: 86.5%; type 1 diabetes: 76.2%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1% (120/332) as observers (ie, logged in but no posts), and 22.3% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. Conclusions: We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research.
| Original language | English (US) |
|---|---|
| Article number | e13312 |
| Journal | Journal of medical Internet research |
| Volume | 21 |
| Issue number | 5 |
| DOIs | |
| State | Published - May 1 2019 |
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Keywords
- Diabetes mellitus
- Online social networking
- Social media
- Women's health
ASJC Scopus subject areas
- Health Informatics
Cite this
DiabetesSistersVoices : Virtual patient community to identify research priorities for women living with diabetes. / Han, Peijin; Nicholson, Wanda; Norton, Anna; Graffeo, Karen; Singerman, Richard; King, Steven; Sundaresan, Aditi; Bennett, Wendy.
In: Journal of medical Internet research, Vol. 21, No. 5, e13312, 01.05.2019.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - DiabetesSistersVoices
T2 - Virtual patient community to identify research priorities for women living with diabetes
AU - Han, Peijin
AU - Nicholson, Wanda
AU - Norton, Anna
AU - Graffeo, Karen
AU - Singerman, Richard
AU - King, Steven
AU - Sundaresan, Aditi
AU - Bennett, Wendy
PY - 2019/5/1
Y1 - 2019/5/1
N2 - Background: Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. Objective: This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. Methods: We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ≥18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants' activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. Results: We enrolled 332 women (white: 86.5%; type 1 diabetes: 76.2%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1% (120/332) as observers (ie, logged in but no posts), and 22.3% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. Conclusions: We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research.
AB - Background: Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. Objective: This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. Methods: We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ≥18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants' activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. Results: We enrolled 332 women (white: 86.5%; type 1 diabetes: 76.2%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1% (120/332) as observers (ie, logged in but no posts), and 22.3% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. Conclusions: We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research.
KW - Diabetes mellitus
KW - Online social networking
KW - Social media
KW - Women's health
UR - http://www.scopus.com/inward/record.url?scp=85066848071&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85066848071&partnerID=8YFLogxK
U2 - 10.2196/13312
DO - 10.2196/13312
M3 - Article
C2 - 31094360
AN - SCOPUS:85066848071
VL - 21
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
SN - 1439-4456
IS - 5
M1 - e13312
ER -