ArticleJournal of medical Internet research2019
DiabetesSistersVoices: Virtual Patient Community to Identify Research Priorities for Women Living With Diabetes.
Article in Journal of medical Internet research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Exploring the use of social media and online methods to engage persons with lived experience and healthcare professionals in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership.PLOS digital health · 2024Article
- U-shaped association between online information exchange and app usage frequency: a large-scale survey of China 's online young and middle-aged people with pre diabetes and diabetes.Frontiers in endocrinology · 2023Article
- Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.Journal of medical Internet research · 2022Article
- Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study.JMIR pediatrics and parenting · 2021Article
- Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers.Current diabetes reports · 2020Review
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundWomen 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.
objectiveThis 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.
methodsWe 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.
resultsWe 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.
conclusionsWe 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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