Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook
Open accessAbstract
Background Several disease-specific information exchanges now exist on Facebook and other online social networking sites. These new sources of knowledge, support, and engagement have become important for patients living with chronic disease, yet the quality and content of the information provided in these digital arenas are poorly understood.Objective To qualitatively evaluate the content of communication in Facebook communities dedicated to diabetes.Design We identified the 15 largest Facebook groups focused on diabetes management. For each group, we downloaded the 15 most recent "wall posts" and the 15 most recent discussion topics from the 10 largest groups.Patients Four hundred eighty unique users were identified in a series of 690 comments from wall posts and discussion topics.Main measures Posts were abstracted and aggregated into a database. Two investigators evaluated the posts, developed a thematic coding scheme, and applied codes to the data.Key results Patients with diabetes, family members, and their friends use Facebook to share personal clinical information, to request disease-specific guidance and feedback, and to receive emotional support. Approximately two-thirds of posts included unsolicited sharing of diabetes management strategies, over 13% of posts provided specific feedback to information requested by other users, and almost 29% of posts featured an effort by the poster to provide emotional support to others as members of a community. Approximately 27% of posts featured some type of promotional activity, generally presented as testimonials advertising non-FDA approved, "natural" products. Clinically inaccurate recommendations were infrequent, but were usually associated with promotion of a specific product or service. Thirteen percent of posts contained requests for personal information from Facebook participants.Conclusions Facebook provides a forum for reporting personal experiences, asking questions, and receiving direct feedback for people living with diabetes. However, promotional activity and personal data collection are also common, with no accountability or checks for authenticity.
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Qualitative analysis of posts and discussion topics in the 10 largest Facebook diabetes management groups found that patients, family members, and friends share personal clinical information, receive emotional support, and request diabetes management guidance from other group members.
“Qualitative analysis of posts and discussion forum topics on the 10 largest diabetes management groups on Facebook revealed that patients, as well as family members and friends, share personal clinical information, receive emotional support, and request diabetes management guidance from other group members.7”
From Social Media and Clinical Care: Ethical, Professional, and Social Implications (2013) · cites this paper as [7]
In that study, clinically inaccurate recommendations were uncommon but were usually tied to promotion of a specific product.
“In addition, although clinically inaccurate recommendations were infrequent, they were usually associated with promotion of a specific product.”
From Social Media and Clinical Care: Ethical, Professional, and Social Implications (2013) · cites this paper as [7]
Greene et al found that 27% of posts in Facebook diabetes management support groups appeared promotional, usually as testimonials.
“Greene et al 7 found that a significant proportion (27%) of posts on Facebook diabetes management support groups appeared to be promotional in nature, typically in the form of testimonials.”
From Social Media and Clinical Care: Ethical, Professional, and Social Implications (2013) · cites this paper as [7]
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- Authors
- Greene, J. A., Choudhry, N. K., Kilabuk, E., & Shrank, W. H.
- Affiliations
- Brigham and Women's Hospital (US)
- Harvard University (US)
- Corresponding author
- Greene, Jeremy A.
- Venue
- Journal of General Internal Medicine
- Published
- 2010-10-13
- Volume
- 26
- Issue
- 3
- Pages
- 287-292
- ISSN
- 0884-8734 (ISSN-L)
- 1525-1497
- PMC
- PMC3043192
- OpenAlex
- W2159877018
- Cited by
- 777
- References
- 14
- Citations by year
- 2026: 14 · 2025: 17 · 2024: 27 · 2023: 26 · 2022: 37 · 2021: 49 · 2020: 63 · 2019: 63 · 2018: 81 · 2017: 59 · 2016: 81 · 2015: 76 · 2014: 58 · 2013: 65 · 2012: 37
- FWCI
- 70.04
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of General Internal Medicine (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Institutes of Health (5k23hl090505-02)
- National Heart, Lung, and Blood Institute (K23HL090505-01, K-23 HL-090505)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Keywords
- diabetes mellitus, Facebook, online social networking, patient communities, health data sharing, emotional support, health promotion, personal data collection, chronic disease self-management, online health information quality
- MeSH terms
- Communications Media, Diabetes Mellitus, Humans, Patient Education as Topic, Social Support, Patient-Centered Care, Disease Management, Internet, Blogging
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