DiabetesSistersVoices

Virtual patient community to identify research priorities for women living with diabetes

Peijin Han, Wanda Nicholson, Anna Norton, Karen Graffeo, Richard Singerman, Steven King, Aditi Sundaresan, Wendy Bennett

Research output: Contribution to journalArticle

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 languageEnglish (US)
Article numbere13312
JournalJournal of medical Internet research
Volume21
Issue number5
DOIs
StatePublished - May 1 2019

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Research
Type 2 Diabetes Mellitus
Organizations
Social Media
Health Priorities
Health Services Research
Type 1 Diabetes Mellitus
Color
Health
Surveys and Questionnaires

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 journalArticle

Han, Peijin ; Nicholson, Wanda ; Norton, Anna ; Graffeo, Karen ; Singerman, Richard ; King, Steven ; Sundaresan, Aditi ; Bennett, Wendy. / DiabetesSistersVoices : Virtual patient community to identify research priorities for women living with diabetes. In: Journal of medical Internet research. 2019 ; Vol. 21, No. 5.
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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.",
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