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Cited by 116Health Literacy and Information AccessibilityDiabetes Management and EducationSocial Media in Health Education

The Emerging Diabetes Online Community

Open access
Hilliard, Marisa, Sparling, Kerri, Hitchcock, Jeff, Oser, Tamara, Hood, Korey·2015·Current Diabetes Reviews
DOI 10.2174/1573399811666150421123448PMC PMC4586085
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Abstract

BACKGROUND: Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes. METHODS: Research and online content related to diabetes online activity is reviewed, and DOC writing excerpts are used to illustrate key themes. Guidelines for meaningful participation in DOC activities for people with diabetes, families, health care providers, and industry are provided. RESULTS: Common themes around DOC participation include peer support, advocacy, self-expression, seeking and sharing diabetes information, improving approaches to diabetes data management, and humor. Potential risks include access to misinformation and threats to individuals' privacy, though there are limited data on negative outcomes resulting from such activities. Likewise, few data are available regarding the impact of DOC involvement on glycemic outcomes, but initial research suggests a positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors. CONCLUSION: The range of DOC participants, activities, and platforms is growing rapidly. The Internet provides opportunities to strengthen communication and support among individuals with diabetes, their families, health care providers, the health care industry, policy makers, and the general public. Research is needed to investigate the impact of DOC participation on self-management, quality of life, and glycemic control, and to design and evaluate strategies to maximize its positive impact.

AI snapshot

Written from the paper’s full text.

TL;DR

This review introduces the Diabetes Online Community (DOC), describing its platforms, participants, benefits, risks, and guidelines for engagement. It concludes that DOC participation may improve emotional and social outcomes and self-management behaviors, but evidence on glycemic outcomes remains limited.

Key findings

  • The DOC spans community forums, blogs, videos/podcasts, and social media; participants are largely adults with type 1 diabetes and parents of children with type 1 diabetes, with growing type 2 and LADA presence and infrequent health care provider involvement.
  • Usage examples include more than 1,000 Facebook groups with “diabetes” in September 2014; ChildrenWithDiabetes.com had 522,000 unique users, 841,000 posts, and 75,000 discussion threads between October 2013 and September 2014; TuDiabetes.org had over 35,000 registered members (50% type 1, 20% type 2, 30% other), and EsTuDiabetes.org had over 29,000 (20% type 1, 50% type 2, 30% other).
  • Common DOC themes include peer support, advocacy, self-expression, information seeking/sharing, data management, and humor; potential risks include misinformation, privacy/security concerns, bad behavior, and industry influence, though data on negative outcomes are limited.
  • Initial research suggests positive impact on emotional experiences, attitudes toward diabetes, and engagement in diabetes management behaviors; over two-thirds of participants in one online resource reported improvements in hopefulness and coping, over 90% of parents in another survey reported increased social support and/or diabetes knowledge, and 84% reported management changes.

Methods

  • Narrative review of research and online content related to diabetes online activity, using DOC writing excerpts to illustrate key themes.
  • Provides guidelines for meaningful DOC participation for people with diabetes, families, health care providers, and industry.
  • Draws on published studies, web analytics/usage examples, blog posts, tweets, and personal communications; no formal tracking system for DOC growth exists.

Limitations

  • The paper states that there is no formal tracking system for DOC activities, making exact rates of growth unavailable; examples are limited and cannot fully represent all people who use online diabetes resources.
  • The paper states that few data are available on negative outcomes, glycemic outcomes, and the direct impact of DOC involvement; research is often limited by multicomponent interventions, moderated chat formats that differ from typical online interactions, and imperfect research methods.
  • Evident from the text: this is a narrative review rather than a systematic review, and some usage statistics rely on web analytics or personal communications rather than peer-reviewed primary data.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.2174/1573399811666150421123448

Cites

53 of 53 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 92 cited sources checked · 0 supported · 0 flagged

  • Findingnone given

    People with diabetes spend over 8,000 hours per year self-managing their diabetes outside of the medical setting.

    “people with diabetes still spend over 8,000 hours per year self-managing their diabetes outside of the medical setting.”
    Quote in the paperNot a substantial claim
  • Findingnone given

    Much activity of the DOC is focused on advocacy initiatives for diabetes-related issues and policy.

    “Much activity of the DOC is focused on advocacy initiatives for diabetes-related issues and policy.”
    Quote in the paperNot a substantial claim
  • Findingreasoning

    Rigorous research evaluating the outcomes of DOC involvement is just beginning to emerge.

    “Rigorous research evaluating the outcomes of DOC involvement is just beginning to emerge.”
    Quote in the paperNot a substantial claim
  • Findingreasoning

    Peer-to-peer support is one of the primary reasons for participation cited by DOC participants.

    “It should not be surprising, then, that peer-to-peer support is one of the primary reasons for participation cited by DOC participants.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Personal story-telling is common in the DOC.

    “Personal story-telling is common in the DOC (Table 1).”
    Quote in the paperNot a substantial claim
  • Classified as probably not a substantial claim. 31
  • May combine two claims. 31

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Findingnone given

    Between October 2013 and September 2014, 522,000 unique users accessed ChildrenWithDiabetes.com and generated 841,000 posts on 75,000 discussion threads.

    “Between October 2013 and September 2014, 522,000 unique users accessed the online forum ChildrenWithDiabetes.com (led by author JH, parent of an adult with type 1 diabetes diagnosed in childhood) and generated 841,000 posts on 75,000 discussion threads.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    As of September 2014, EsTuDiabetes.org had over 29,000 registered members (20% type 1, 50% type 2, 30% other).

    “EsTuDiabetes.org, its Spanish language counterpart, had over 29,000 registered members (20% with type 1 diabetes, 50% with type 2 diabetes, 30% described as other) from across the globe [7].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [7] Hernandez M. Personal communication with Jeff Hitchcock, 9 October 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingnone given

    In September 2014, a search of Facebook groups including the phrase "diabetes" resulted in more than 1,000 groups.

    “For example, in September 2014, a search of Facebook groups including the phrase “diabetes” resulted in more than 1,000 groups.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Findingnone given

    Online activity focused on diabetes has grown at an extremely rapid pace over the past three decades.

    “Over the past three decades, online activity focused on diabetes has grown at an extremely rapid pace.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingcitation

    As of September 2014, TuDiabetes.org had over 35,000 registered members (50% type 1, 20% type 2, 30% other).

    “As of September 2014, TuDiabetes.org, an online community for people living with all types of diabetes, had over 35,000 registered members (50% with type 1 diabetes, 20% with type 2 diabetes, 30% described as other)”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [7] Hernandez M. Personal communication with Jeff Hitchcock, 9 October 2014

      Not checked in the free run.

  • May combine two claims.

    Findingcitation

    In 2010, #dsma tweet-chats had an average of 40-50 participants per week; current rates average 60-100 participants posting 700-1,000 comments per week.

    “in 2010 there were an average of 40-50 participants per week, and current rates average 60-100 participants posting 700-1,000 comments per week, depending on the topic and time of year [8].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [8] Shockley C. Personal communication with Kerri Sparling, 9 October 2014

      Not checked in the free run.

  • May combine two claims.

    Findingreasoning

    Much of the data from diabetes devices is housed in device-specific software programs and cannot be easily shared between devices, limiting accessibility and leaving much data unused.

    “However, much of the data is housed in device-specific software programs and cannot be easily shared between devices. This forces people with diabetes and their providers to rely on device companies’ software programs, limits accessibility to data and leaves much data unused, and makes it difficult to identify important patterns and trends in blood glucose and insulin usage.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingnone given

    Nightscout has over 10,000 members in its Facebook group.

    “Nightscout, which has over 10,000 members in its Facebook group, later worked with the FDA to argue for wider availability of data produced by CGMs and other devices.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingnone given

    Research on DOC involvement is quite limited and focuses most on patterns of engagement and preferences of DOC participants.

    “Just as health care professionals’ involvement in the DOC is not yet widespread, research on this topic is also quite limited and focuses most on patterns of engagement and preferences of DOC participants.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingnone given

    Many risks of DOC are common to any online activity, not unique to participation in online diabetes-related activities.

    “Many of these risks are common to any online activity, not unique to participation in the online diabetes-related activities.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    The "Spare a Rose, Save a Child" campaign had an 8-fold increase in contributions to over $28,000 in 2014, enough to provide insulin to about 450 children with type 1 diabetes for one year.

    “the successful growth of its activities (with an 8-fold increase in contributions to over $28,000 in 2014: enough to provide insulin to about 450 children with type 1 diabetes for one year) drew specific mention from the Life for a Child Programme’s general manager [50].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [50] Ogle G. Save a child thank you update. 24 February 2014: Available from: http://www.p4dc.com/wpcontent/ uploads/2014/02/LFAC-save-a-child-thank-you-update.pdf on 13 November 2014. 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Findingreasoning

    Anonymity is generally accepted across diabetes-related online resources, and participants have varying levels of comfort with disclosing health information online.

    “Anonymity is generally accepted across diabetes related online resources, and participants have varying levels of comfort with disclosing health information online.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingreasoning

    Sharing diabetes information and stories online does not require full disclosure.

    “However, sharing diabetes information and stories online does not require full disclosure.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingnone given

    Health care professionals' involvement in the DOC is not yet widespread.

    “Just as health care professionals’ involvement in the DOC is not yet widespread, research on this topic is also quite limited and focuses most on patterns of engagement and preferences of DOC participants.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Research indicates that the most consistent reasons that people engage with the DOC include to seek emotional support and social connection, to share personal experiences, to learn and share medical information, and to become involved in advocacy efforts.

    “Research indicates that the most consistent reasons that people engage with the DOC include to seek emotional support and social connection, to share personal experiences, to learn and share medical information, and to become involved in advocacy efforts [25-34].”
    Quote in the paperNot a substantial claim0 of 10 sources checked
    • cites [25] Greene J.A. Coudhry N.K. Kilabuk E. Shrank W.H. Online social networking by patients with diabetes: A qualitative evaluation of communication with Facebook. J. Gen. Intern. Med. 2010 26 287 292 20945113 PMC3043192

      Not checked in the free run.

    • cites [26] Harris M.A. Hood K.K. Mulvaney S.A. Pumpers, skypers, surfers and texters: Technology to improve the management of diabetes in teenagers. Diabetes Obes. Metab. 2012 14 967 972 22443170

      Not checked in the free run.

    • cites [27] Arduser L. Warp and weft: Weaving the discussion threads of an online community. J. Tech. Writ. Commun. 2011 41 5 31

      Not checked in the free run.

    • cites [28] Norfeldt S. Bertero C. Young patients’ views on the Open Web 2.0 childhood diabetes patient portal: A qualitative study. Future Internet 2012 4 514 527

      Not checked in the free run.

    • cites [29] Ho Y. O’Connor B.H. Mulvaney S.A. Features of online health communities for adolescents with type 1 diabetes. West. J. Nurs. Res. 2014 36 1183 1198 24473058 PMC4112166

      Not checked in the free run.

    • cites [30] Balkhi A.M. Reid A.M. McNamara J.P. Geffken G.R. The diabetes online community: The importance of forum use in parents of children with type 1 diabetes. Pediatr. Diabetes 2013 15 408 415 24372986

      Not checked in the free run.

    • cites [31] Niela-Vilen H. Axelin A. Salantera S. Melender H. Internet-based peer support for parents: A systematic integrative review. Int. J. Nurs. Stud. 2014 51 1524 1537 24998788

      Not checked in the free run.

    • cites [32] Zriebec J.F. Jacobson A.M. What attracts patients with diabetes to an internet support group? A 21-month longitudinal website study. Diabet. Med. 2001 18 154 158 11251681

      Not checked in the free run.

    • cites [33] Chen A.T. Exploring online support spaces: Using cluster analysis to examine breast cancer, diabetes and fibromyalgia support groups. Patient Educ. Couns. 2012 87 250 257 21930359

      Not checked in the free run.

    • cites [34] Ravert R.D. Hancock M.D. Ingersoll G.M. Online forum messages posted by adolescents with type 1 diabetes. Diabetes Educ. 2004 30 827 834 15510534

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationreasoning

    These group differences in access may perpetuate disparities in utilization and potential benefit.

    “These group differences in access may perpetuate disparities in utilization and potential benefit.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    There is no formal tracking system for DOC activities, making exact rates of growth unavailable.

    “There is no formal tracking system for activities that occur under the large umbrella of the DOC, making exact rates of growth unavailable.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    The DOC is largely comprised of individuals with type 1 diabetes (primarily adults) and the immediate family members of children with type 1 diabetes (primarily parents).

    “The DOC is largely comprised of individuals with type 1 diabetes (primarily adults) and the immediate family members of children with type 1 diabetes (primarily parents) [10].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [10] Gilbert K. Dodson S. Gill M. McKenzie R. Online communities are valued by people with type 1 diabetes for peer support: How well do health professionals understand this? Diabetes Spectr. 2012 25 180 191

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    People with diabetes are recommended to check in with their diabetes care team quarterly for lab work and physical examinations, resulting in only a few hours of face-to-face contact with medical professionals for diabetes each year.

    “People with diabetes are recommended to check in with their diabetes care team quarterly for lab work and physical examinations [35], resulting in only a few hours of face-to-face contact with medical professionals for diabetes each year.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [35] American Diabetes Association 2014

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Health care providers are becoming active in the DOC, although their involvement remains infrequent.

    “Health care providers are becoming active in the DOC, although their involvement remains infrequent [10-12].”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [10] Gilbert K. Dodson S. Gill M. McKenzie R. Online communities are valued by people with type 1 diabetes for peer support: How well do health professionals understand this? Diabetes Spectr. 2012 25 180 191

      Not checked in the free run.

    • cites [11] McMahon K.L. Power and pitfalls of social media in diabetes care. Diabetes Spectr. 2013 26 232 235

      Not checked in the free run.

    • cites [12] Grajales F.J. Sheps S. Ho K. Novak-Lauscher K. Eysenbach G. Social media: A review and tutorial of applications and medicine in health care. J. Med. Internet Res. 2014 16 e13 24518354 PMC3936280

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    There is ample evidence of the benefits of peer-to-peer support, though this evidence is mostly based on direct in-person interactions rather than online support, which has less evidence supporting it to date.

    “There is ample evidence of the benefits of peer to peer support [22, 23], though this evidence is mostly based on direct in-person interactions rather than online support, which has less evidence supporting it to date [24].”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [22] Van Dam H.A. van der Horst F.G. Knoops L. Ryckman R.M. Crebolder H.F. van den Borne B.H. Social support in diabetes: A systematic review of controlled intervention studies. Patient Educ. Couns. 2005 59 1 12 16198213

      Not checked in the free run.

    • cites [23] Dale J.R. Williams S.M. Bowyer V. What is the effect of peer support on diabetes outcomes in adults? A systematic review. Diabet. Med. 2012 29 1361 1377 22804713

      Not checked in the free run.

    • cites [24] Eysenbach G. Powell J. Englesakis M. Rizo C. Stern A. Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. BMJ 2004 328 1166 15142921 PMC411092

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Over 90% of individuals in the United States go online daily and over 90% have a cell phone; nearly 60% have smartphones.

    “The Pew Research Center recently published findings that over 90% of individuals in the United States go online daily and over 90% have a cell phone. Nearly 60% have smartphones [16].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [16] Smith A. Smartphone ownership 2013. 5 June 2013. Available from: http://www.pewinternet.org/2013/06/05/smartphoneownership- 2013/ on 21 November 2014. 2013

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    As early as the 1980s, discussions about diabetes began online via proprietary dial-up services; the largest diabetes-related group communicated on misc.health.diabetes.

    “As early as the 1980s, discussions about diabetes began to take place online via proprietary dial-up services; the largest diabetes-related group communicated on misc.health.diabetes [4].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [4] No author. Diabetes Index. 27 March 2014: Available from: http://www.faqs.org/faqs/diabetes/ on 13 November 2014. 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Many adolescents and young adults may wish to access health resources online.

    “many may wish to access health resources online [15]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [15] Fergie G. Hunt K. Hilton S. What young people want from health-related online resources: A focus group study. J. Youth Stud. 2013 16 579 596 24748849 PMC3982905

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based). May combine two claims.

    Interpretationreasoning

    Many DOC conversations emphasize parenting and older adult issues related to diabetes, which may limit adolescents' interest or participation.

    “yet many DOC conversations emphasize parenting and older adult issues related to diabetes, which may limit adolescents’ interest or participation.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Approximately one-quarter of Internet users access information about others' experiences with health issues online and 16% of Internet users seek others with similar health concerns.

    “approximately one-quarter of Internet users access information about others’ experiences with health issues online and 16% of Internet users seek others with similar health concerns [17].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [17] Fox S. Duggan M. Health online 2013. 15 January 2013. Available from: http://www.pewinternet.org/2013/01/15/health-online-2013/ on 21 November 2014. 2013

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The terms "diabetes online community" and "DOC" were first used in 2005 on the blog Six Until Me.

    “The terms “diabetes online community” and its acronym “DOC” were first used to refer to the various online forums and content for people with diabetes and their families in 2005 on the blog Six Until Me (written by author KS, adult diagnosed with type 1 diabetes in childhood) [5].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [5] Sparling K. Rage bolus, anyone? 4 October 2005: Available from http://sixuntilme.blogspot.com/2005/10/rage-bolus-anyone.html on 13 November 2014

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    The online portions of those studies are often moderated chat sessions led by a trained health professional, which are different than unmoderated blogs or interactions more commonly found online.

    “Moreover, the online portions of those studies are often moderated chat sessions led by a trained health professional [79, 80], which are different than unmoderated blogs or interactions more commonly found online.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [79] Salzer M.S. Palmer S.C. Kaplan K. A randomized, controlled study of internet peer-to-peer interactions among women newly diagnosed with breast cancer. Psychooncology 2010 19 441 446 19484712

      Not checked in the free run.

    • cites [80] Letorneau N. Stewart M. Masuda J.R. Impact of online support for youth with asthma and allergies: Pilot study. J. Pediatr. Nurs. 2012 27 65 73 22222108

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    A 2011 study of health bloggers across chronic conditions demonstrated that people who more frequently blogged about health issues perceived more social support, particularly when they received at least one comment on their posts.

    “A 2011 study of health bloggers across a number of chronic conditions demonstrated that people who more frequently blogged about health issues perceived more social support, particularly when they received at least one comment on their posts.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [42] Rains S.A. Keating D.M. The social dimension of blogging about health: Health blogging, social support, and well-being. Commun. Monogr. 2011 78 511 534

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Scullard and colleagues found that accurate information about a variety of conditions and health concerns was only provided about 40% of the time and that most of the time, no information (or answer to a specific question) was given.

    “Scullard and colleagues found that accurate information about a variety of conditions and health concerns was only provided about 40% of the time and that most of the time, no information (or answer to a specific question) was given [68].”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [68] Scullard P. Peacock C. Davies P. Googling children’s health: Reliability of medical advice on the internet. Arch. Dis. Child. 2010 95 580 582 20371593

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    A recent Pew survey reported that people with chronic medical conditions were more likely to discuss health information found online with a healthcare provider, compared to internet users without chronic conditions.

    “Consistent with these findings, a recent Pew survey reported that people with chronic medical conditions were more likely to discuss health information found online with a healthcare provider, compared to internet users without chronic conditions [18].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [18] Fox S. Duggan M. The Diagnosis Difference. 26 November 2013. Available from: http://www.pewinternet.org/2013/11/26/thediagnosis- difference/ on 24 February 2015. 2015

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    A Dutch survey of participants in online support groups for breast cancer, arthritis, and fibromyalgia reported that regardless of posting frequency, participants reported increases in confidence and self-esteem, but those who contributed more frequently experienced greater social benefits.

    “A Dutch survey of participants in online support groups for people with breast cancer, arthritis, and fibromyalgia reported similar findings: regardless of posting frequency, participants reported increases in confidence and self-esteem, but those who contributed more frequently experienced greater social benefits of participation [13].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [13] Van Uden-Kraan C.F. Drossaert C.H. Taal E. Seydel E.R. van de Laar M.A. Self-reported differences in empowerment between lurkers and posters in online patient support groups. J. Med. Internet Res. 2008 10 e18 18653442 PMC2483925

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based). May combine two claims.

    Premisenone given

    Negative messages and unpleasant interactions may occur in any community, and public forums like the Internet are no exception.

    “Negative messages and unpleasant interactions may occur in any community, and public forums like the Internet are no exception.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    In a study of women searching online for menopause and hormone replacement therapy information, researchers in England described a three-stage process: scanning to sift out untrustworthy sites, careful review for relatability and integrity, and integrating online information with advice from family, friends, and medical professionals.

    “based on direct observations of women searching the Internet for information about menopause and hormone replacement therapy, researchers in England described a three-stage process: (1) scanning online content to sift out untrustworthy sites, (2) careful review of remaining sites for relatability and integrity, and (3) integrating online information with advice from family, friends, and medical”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [69] Sillence E. Briggs P. Harris P.R. Fishwick L. How do patients evaluate and make use of online health information? Soc. Sci. Med. 2007 64 1853 1862 17328998

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based). May combine two claims.

    Interpretationreasoning

    Many sites, blogs, and social media accounts are not moderated, and it would be impossible for trained medical or mental health professionals to keep up with the constantly growing online content, making it difficult to know whether information provided online is trustworthy.

    “Many sites, blogs, and social media accounts are not moderated, and it would be impossible for trained medical or mental health professionals to keep up with the constantly growing online content, making it difficult to know whether information provided online is trustworthy.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

    Study design and conductnone given

    The limited set of examples provided cannot fully represent the experiences of all people who use online resources in relation to living with diabetes.

    “Several examples of DOC venues and writing excerpts are provided to illustrate key concepts, though such a limited set of examples cannot fully represent the experiences of all people who use online resources in relation to living with diabetes.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    It is likely that similar processes take place for people with diabetes, with online resources representing one of several sources of diabetes-related information, including healthcare professionals.

    “It is likely that similar processes take place for people with diabetes, with online resources representing one of several sources of diabetes-related information, including healthcare professionals.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [69] Sillence E. Briggs P. Harris P.R. Fishwick L. How do patients evaluate and make use of online health information? Soc. Sci. Med. 2007 64 1853 1862 17328998

      Not checked in the free run.

    • cites [18] Fox S. Duggan M. The Diagnosis Difference. 26 November 2013. Available from: http://www.pewinternet.org/2013/11/26/thediagnosis- difference/ on 24 February 2015. 2015

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    A wide range of advocacy activities occur within the DOC, including diabetes education, offering support, organizing community events, and serving as "consumer watchdogs" for diabetes-related products.

    “A wide range of advocacy activities occur within the DOC, including diabetes education, offering support, organizing community events, and serving as “consumer watchdogs” for diabetes-related products [43].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [43] Tenderich A. Advocacy, DSMA-style. 28 February 2014: Available from: http://www.diabetesmine.com/2014/02/advocacyjournalism- diabetesmine-style.html on 13 November 2014. 2014

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Current diabetes management technologies such as glucose meters, insulin pumps, and continuous glucose monitors capture a great deal of data, which can be used to inform diabetes care decisions such as insulin adjustments and to result in better glycemic control.

    “Current diabetes management technologies such as glucose meters, insulin pumps, and continuous glucose monitors (CGM) capture a great deal of data, which can be used to inform diabetes care decisions such as insulin adjustments and to result in better glycemic control [57].”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [57] Mauras N. Fox L. Englert K. Beck R.W. Continuous glucose monitoring in type 1 diabetes. Endocrine 2013 43 41 50 22926738

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    These behaviors represent what Suler and colleagues call "the online disinhibition effect," in which people behave in ways online that they would likely not behave in person.

    “These behaviors represent what Suler and colleagues call “the online disinhibition effect,” in which people behave in ways online that they would likely not behave in person [63].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [63] Suler J. The online disinhibition effect. Cyberpsychol. Behav. 2004 7 3 321 326 15257832

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Nightscout worked with the FDA to argue for wider availability of data produced by CGMs and other devices, and they were successful; the FDA significantly changed their rules such that software displaying medical device data does not require marketing approval, but must simply be registered with the FDA.

    “They were successful, and the FDA significantly changed their rules such that software displaying medical device data does not require marketing approval, but must simply be registered with the FDA.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [60] Linebaugh K. Smartwatch app helps track glucose. 8 February 2015: Available from: http://www.wsj.com/articles/smartwatchapp- helps-track-glucose-1423443067 on 8 February 2015. 2015

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    In 2013, the Partnering for Diabetes Change Coalition created the "Spare a Rose, Save a Child" campaign to benefit the International Diabetes Federation's Life for a Child Programme.

    “In 2013, the Partnering for Diabetes Change Coalition created the “Spare a Rose, Save a Child” campaign to benefit the International Diabetes Federation’s Life for a Child Programme, which provides an opportunity for people to make small donations that fund insulin and diabetes management supplies for people with diabetes in developing countries [49].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [49] Partnering for Diabetes Change Partnering for Diabetes Change. Welcome. No date. Available from: http://www.p4dc.com/welcome/ on 13 November 2014. 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    The American College of Physicians and the Federation of State Medical Boards issued a joint position paper that offers advice for online professionalism for physicians, focused primarily on how physicians and the profession could protect themselves from unethical involvement in online communities.

    “The American College of Physicians and the Federation of State Medical Boards issued a joint position paper that offers advice for online professionalism for physicians [73], the focus of which was primarily how physicians and the profession could protect themselves from unethical involvement in online communities.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [73] Farnan H.M. Sulmasy L.S. Worster B.K. Chaudhry H.J. Rhyne J.A. Arora V.M. American College of Physician Ethics, Professionalism and Human Rights Committee, the American College of Physicians Council of Associates, and the Federation of State Medical Boards Special Committee on Ethics and Professionalism Online medical professionalism: Patient and public relationships: Policy statement from the American College of Physicians and the Federation of State Medical Boards. Ann. Intern. Med. 2013 158 620 627 23579867

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationreasoning

    Referral to online support and networks has the potential to be an important supplement to professional health care services.

    “In addition, health care providers have limited resources to provide one-on-one interventions and support to people with chronic medical conditions such as diabetes, and referral to online support and networks has the potential to be an important supplement to professional health care services.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: Health care providers have limited resources to provide one-on-one interventions and support to people with chronic medical conditions such as diabetes.

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationreasoning

    It is possible that simply reading blogs and comments could offer diabetes care providers valuable insight about their patients' experiences, and a deeper understanding of various barriers to care.

    “It is possible that simply reading blogs and comments could offer diabetes care providers valuable insight about their patients’ experiences, and a deeper understanding of various barriers to care.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationcitation

    Although not specific to diabetes, these findings have implications for DOC participants' ability to strengthen health behaviors and to share knowledge and encourage one another to advocate for themselves with their health care providers.

    “Although not specific to diabetes, these findings have implications for DOC participants’ ability to strengthen health behaviors and to share knowledge and encourage one another to advocate for themselves with their health care providers.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [88] Bartlett Y.K. Coulson N.S. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ. Couns. 2011 83 113 119 20599338

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Quantitative and qualitative data from participants in a variety of online health support groups note perceptions of benefits, including having learned helpful health information online, increased confidence in patient-provider interactions, and increased optimism and control in relation to disease.

    “Similarly, quantitative and qualitative data from participants in a variety of online health support groups note perceptions of benefits, including having learned helpful health information online, increased confidence in patient-provider interactions, and increased optimism and control in relation to disease [13, 87].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [13] Van Uden-Kraan C.F. Drossaert C.H. Taal E. Seydel E.R. van de Laar M.A. Self-reported differences in empowerment between lurkers and posters in online patient support groups. J. Med. Internet Res. 2008 10 e18 18653442 PMC2483925

      Not checked in the free run.

    • cites [87] Van Uden-Kraan C.F. Drossaer C.H. Taal E. Shaw B.R. Seydel E.R. van de Laar M.A. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual. Health Res. 2008 18 405 417 18235163

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

    Interpretationreasoning

    There is a great deal of potential for the DOC to be used as a tool to strengthen patient-provider relationships and ultimately health care delivery and outcomes: the DOC can help people with diabetes become informed and empowered, and can also give healthcare providers insight into the many hours people spend self-managing diabetes outside of their direct medical oversight.

    “There is a great deal of potential for the DOC to be used as a tool to strengthen patient-provider relationships and ultimately health care delivery and outcomes: the DOC can help people with diabetes become informed and empowered, and can also give healthcare providers insight into the many hours people spend self-managing diabetes outside of their direct medical oversight.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Interpretationnone given

    Health care provider involvement in the DOC has the potential to improve clinical care in many ways.

    “Health care provider involvement in the DOC has the potential to improve clinical care in many ways, yet limited data exist to inform how health care professionals can appropriately do so.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    A recent meta-analysis reported trends toward positive impact of health behavior change interventions that included social networking, although it was difficult to isolate the effects of the online activity from other components of the intervention.

    “A recent meta-analysis reported trends toward positive impact of health behavior change interventions that included social networking, although it was difficult to isolate the effects of the online activity from other components of the intervention [77].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [77] Laranjo L. Arguel A. Neves A.L. The influence of social networking sites on health behavior change: A systematic review and meta-analysis. J. Am. Med. Inform. Assoc. 2015 22 243 256 25005606 PMC4433372

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    Lack of other research may leave many health care providers unsure how to interact with or counsel their patients regarding online diabetes resources.

    “However, lack of other research may leave many health care providers unsure how to interact with or counsel their patients regarding online diabetes resources.”
    Quote in the paperSubstantial claim
51 of 51

  • The paper relies on this without support.

    Web analytic tracking tools provide valid estimates of the DOC’s scope and reach.

    “However, the community’s scope and reach can be estimated through web analytic tracking tools, and examples of usage rates from selected online forums, blogs, and social media sites are indicative of the community’s size and activity.”

  • The paper relies on this without support.

    Health care providers have limited resources to provide one-on-one interventions and support to people with chronic medical conditions such as diabetes.

    “In addition, health care providers have limited resources to provide one-on-one interventions and support to people with chronic medical conditions such as diabetes, and referral to online support and networks has the potential to be an important supplement to professional health care services.”

  • The paper relies on this without support.

    Websites of professional diabetes organizations such as the ADA or academic institutions can generally be trusted to include accurate health information and links to reviewed websites.

    “For example, websites of professional diabetes organizations such as the ADA or academic institutions can generally be trusted to include accurate health information and links to reviewed websites.”

  • The paper relies on this without support.

    Most websites and blogs typically contain disclosures, disclaimers, or terms of use that include two key points: content is not intended to be medical advice, and content represents the personal views of the person writing the information.

    “In addition, most websites and blogs typically contain disclosures, disclaimers, or terms of use that include two key points: 1) content is not intended to be medical advice, and 2) content represents the personal views of the person writing the information.”
4 of 4

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Cites

Flagged first, then by citations

Research works printed but not linked: 16

  1. [36]Van Dam H.A. van der Horst F.G. Knoops L. Ryckman R.M. Crebolder H.F. van den Borne B.H. Social support in diabetes: A systematic review of controlled intervention studies. Patient Educ. Couns. 2005 59 1 12 16198213
  2. [37]Dale J.R. Williams S.M. Bowyer V. What is the effect of peer support on diabetes outcomes in adults? A systematic review. Diabet. Med. 2012 29 1361 1377 22804713
  3. [39]Hernandez M. Art and Science of Applying Behavioral Medicine Principles to the Diabetes Online Community (DOC). Proceedings of the 74th Scientific Sessions of the American Diabetes Association 2014 June 2014 San Francisco, CA, USA
  4. [51]Name No No Name (@humnpincushion). “It helps me to put my feelings into a tangible form and I hope that it helps someone else who comes across it.” 24 September 2014, 6:33 p.m. Tweet. 2014
  5. [52]Kimball Lesley (@poeticlibrarian). “Mostly for myself-way to think through things. Also didn’t find many voices of T1 parents with T1 kids & wanted to speak to that.” 24 September 2014, 6:34 p.m. Tweet. 2014
  6. [53]Grinnell James (@t1dme). “I write about my diabetes in order to cope; I share what I write in the hope that it inspires others to help themselves.” 24 September 2014, 6:36 p.m. Tweet. 2014
  7. [76]Head Rachel (@rachelheadcde). “I look to the #DOC for firsthand perspectives of #PWD [people with diabetes]. Makes me a better person/CDE” 24 September 2014, 6:26 p.m. Tweet. 2014
  8. [93]Hoskins M. (@mhoskins2179). “I didn’t get into #DOC to advocate or “make a diff.” I found peeps & decided I had stuff to share”. 24 Septmeber 2014, 6:54 p.m. Tweet. 2014
  9. [94]Rawlings Kelly (@kellyrawlings) “@MHoskins2179 Interesting point. That was my motivation, too, but have learned how to advocate and make a diff from the #doc” 24 September 2014, 6:56 p.m.Tweet. 2014
  10. [95]Name No (@type1type). “It’s liberating- putting your experiences out there. And more often than not, you’d hear from others who shared them, good and bad” 24 September 2014, 6:38 p.m. Tweet. 2014
  11. [96]DePope (@leighanndepope). “I share my story online because I have no other outlet for it and can find others who relate.” 24 September 2014, 6:35 p.m. Tweet. 2014
  12. [101]No name. (@inspiredbyisa). “Be real. Share personal experiences. Listen to others without judging” 24 September 2014, 6:53 p.m. Tweet. 2014
  13. [102]No name (@chasinglows). “Empathy should come first. We’re all in this together and all at different stages. Be patient” 24 September 2014, 6:53 p.m. Tweet. 2014
  14. [103]No name. (@StephenSType1) “Don’t be afraid to tell your story. Someone is out there who needs to hear it” 24 September 2014, 6:50 p.m. Tweet. 2014
  15. [104]No name. (@MNAZLaddie). “Give of yourself & you will receive. Ask for help & someday you will give help” 24 September 2014, 6:48 p.m. Tweet. 2014
  16. [105]No name. (@diabetesheroes) “Keep your eyes, ears, and mind open to others. And also keep your fingers on the keyboard and add to the conversation” 24 September 2014, 6:48 p.m. Tweet.

Cited by

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Related

Authors
Hilliard, M., Sparling, K., Hitchcock, J., Oser, T., & Hood, K.
Affiliations
  • Baylor College of Medicine (US)
  • Stanford University (US)
Corresponding author
Hilliard, Marisa
ORCID
Venue
Current Diabetes Reviews
Publisher
Bentham Science Publishers Ltd.
Published
2015-07-29
Volume
11
Issue
4
Pages
261-272
ISSN
1573-3998 (ISSN-L)
DOI
10.2174/1573399811666150421123448
PMC
PMC4586085
OpenAlex
W2100390193
Cited by
116
References
53
Citations by year
2026: 3 · 2025: 8 · 2024: 12 · 2023: 8 · 2022: 14 · 2021: 16 · 2020: 15 · 2019: 12 · 2018: 7 · 2017: 12 · 2016: 8 · 2015: 1
FWCI
17.03
Type
journal article
Language
en
Open access
Licence
cc-by-nc
Locations
  • Current Diabetes Reviews (publishedVersion)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
Funders
  • Office of Special Education and Rehabilitative Services
  • National Institute of Diabetes and Digestive and Kidney Diseases (DP3DK104054, K12DK097696)
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
  • Social Sciences › Health › Social Media in Health Education
Keywords
online communities, diabetes self-management, peer support, health misinformation, privacy risks, glycemic control, emotional well-being, diabetes advocacy, online health information sharing, humor
MeSH terms
Adaptation, Psychological, Attitude to Computers, Communication, Diabetes Mellitus, Type 1, Diabetes Mellitus, Type 2, Humans, Health Knowledge, Attitudes, Practice, Self Care, Social Support, Cost of Illness, Internet, Consumer Health Information, Blogging, Social Media

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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-10.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-10.

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