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Abstract

Objective:

This purpose of this study was to conduct a rapid review and environmental scan of diabetes online communities (DOCs) to highlight the clinical impact of DOC engagement and provide guidance to health care providers for navigating and prescribing DOCs.

Methods:

This two-phase review included a rapid review of clinical outcomes and an assessment of DOC content. We conducted a literature search for studies evaluating DOC use and glucometric (glycated hemoglobin [A1C], time-in-range, hypoglycemia), behavioral, and psychosocial outcomes. The environmental scan of current DOC sites established key features, including available platforms, target population, content areas, and reach.

Results:

Twelve papers were included—eight reported DOC use within a context of do-it-yourself (DIY) noncommercial, opensource hybrid closed loop systems community and four were non-DYI related. In latter, all studies were cross-sectional, describing patient-reported outcomes. Two studies reported A1C lowering with DOC use, two DOC use was associated with high self-efficacy, one showed association with higher self-care levels, and one showed higher quality of life scores when compared with population norms. All DIY studies showed improvement in glucometrics after initiation of sensor augmented pump technology with DOC support. Of 54 DOC sites reviewed in the environmental scan, 29 were included. Diabetes online community sites were heterogenous in social media platform and type of diabetes targeted.

Conclusion:

Diabetes online communities have the potential to improve clinical, behavioral, and psychosocial outcomes. Randomized control trials and/or longitudinal prospective studies evaluating outcomes are needed to further examine the potential benefits of DOC use. Diabetes online communities are diverse and span a variety of social media platforms, providing clinicians opportunities to individualize recommendations for DOC use.

Keywords

diabetes online community clinical impact of diabetes online communities diabetes peer support PWD and DOC social media and diabetes

Background

Diabetes is a chronic condition which is monitored and treated continuously by the person with diabetes; therefore, it is managed in a social context and ongoing support is necessary to optimize outcomes for this complex chronic condition. Family, a common source of support, can be helpful, though unhelpful behaviors (eg, nagging, controlling) have been identified.¹ Some people with diabetes (PWD) have no family for ongoing support.^2,3 With the rise in social media and opportunity for social media to be a conduit and community for diabetes support, diabetes online communities (DOCs) emerged.⁴ This article ascribes to the definition of an organic DOC as stated by Litchman et al,5 being a grassroots group of individuals living with or caring for someone with diabetes who gather in online spaces to interact with peers.

Diabetes online communities vary in type, function, and purpose. Some DOCs have been organically developed by people affected by diabetes, while others by professional organizations, nonprofit/for-profit organizations, health systems, and researchers.⁵ Diabetes online communities traverse a myriad of online spaces, including Web sites with interactivity (eg, comments section), blogs, forums, Facebook, Twitter, Instagram, Snapchat, and TikTok, among others. Some DOCs target people with a specific type of diabetes, while others target specific age groups, gender, or language. Although not quantified, the rise in DOC use and other disease-specific online peer support communities correlates with the rise in general social media use.

The “S” in DMSES Is for Ongoing Support

The current standard of care for recognized diabetes education programs,as stated by the American Diabetes Association (ADA),is based upon diabetes self-management training, including a self-efficacy and support component called diabetes self management self efficacy (DMSES) ⁶ which calls for PWD to have an ongoing diabetes support plan. Peers with diabetes can address unique social support needs when compared with health care professionals (HCPs), family and friends, or community leaders.⁷ Peer support can be provided via multiple venues, including attending classes and/or education visits with a PWD, participating in community support groups and DOCs.⁷ A recent survey of US diabetes care and education specialists reported that one-third of respondents recommended participation in DOCs.⁸ The Association of Diabetes Care and Education Specialists (ADCES) developed resources to guide clinicians on how to engage with DOCs noting the anecdotal benefits and provides a list of DOCs to explore.⁹ Despite the rise in DOC research and professional organization encouragement of DOC integration as ongoing support,¹⁰ navigation of DOCs remains a challenge and aside from suggestions to search DOC options by platform preference,¹¹ few resources are available for clinicians.

The overarching aim of this article is to distill the current DOC literature within the clinical context to provide insights for DOC use in the real world. We aim to provide a summary of clinical efficacy associated with DOC use and an expert opinion of application of DOC resources, based on specific needs of PWD. To accomplish these goals, we conducted a rapid systematic review of DOC studies with quantitative outcomes and an environmental scan reporting key features of DOCs to facilitate HCP navigation.

Methods

This review was conducted in two phases.

Phase 1: Rapid Review

The rapid review process was selected to meet the needs of clinicians in a timely manner and facilitate the adoption of the clinical guidelines which recommend DOC use. In addition, the literature available to review is retrospective and observational, not randomized clinical trials; thus, few of the studies would meet criteria for meta-analysis. This rapid review consisted of an initial literature search for studies establishing the association between DOC use and glucometrics (glycated hemoglobin [A1C], time-in-range, hypoglycemia), behavioral (self-care, self-efficacy), and psychosocial outcomes (quality of life, diabetes distress). Due to the limited number of publications and minimal evidence, as well as the observational nature of the evidence, this literature does not lend itself to meta-analysis. The authors agreed that a rapid review as opposed to a systematic review was appropriate for this subject, given the need for timely adoption of current ADA and ADCES guidelines indicating the benefits of using the DOC.

Eligibility criteria

We included randomized controlled trials and observational studies, in English, evaluating organic DOCs within the context of quantitative outcomes. Studies were excluded if they did not meet predefined definition of a DOC, did not review or report actual DOC use (eg, virtual remote monitoring programs and telemedicine), or if they were published in abstract form only. Reference lists of all included articles were screened for additional eligible studies.

Search strategy

Following the rapid review process as described by HRQ.gov, the team followed the principles of Preferred Reporting Items for Systematic Reviews and Meta-Analyses recommendations to identify all eligible studies.^12,13 A medical librarian conducted the literature search (Table 1) on April 19, 2021.

Table 1.

Search Strategy.

Databases searched	Research strategy
PubMed, Google Scholar, CINAHL, Embase	“diabetes online community” OR “ online peer support community” “internet OR “online” OR “ online community” OR “ virtual community” OR “virtual”[Mesh] OR social media OR “web” OR “web-based” OR “facebook” OR “Instagram” OR “twitter” or “blog” or “online support” OR “peer support” AND (“Diabetes Mellitus”) OR “Diabetes” OR “type 1 diabetes” OR “type 2 diabetes” OR hypoglycemia OR “hyperglycemia” OR “A1C” OR “glycemic” Filter: Reviews & Clinical Study.

Databases searched

Research strategy

PubMed, Google Scholar, CINAHL, Embase

“diabetes online community” OR “ online peer support community” “internet OR “online” OR “ online community” OR “ virtual community” OR “virtual”[Mesh] OR social media OR “web” OR “web-based” OR “facebook” OR “Instagram” OR “twitter” or “blog” or “online support” OR “peer support” AND (“Diabetes Mellitus”) OR “Diabetes” OR “type 1 diabetes” OR “type 2 diabetes” OR hypoglycemia OR “hyperglycemia” OR “A1C” OR “glycemic” Filter: Reviews & Clinical Study.

Study selection

One author independently screened papers by evaluating titles and abstracts. Then, one author conducted a full-text review of all eligible papers for inclusion and data extraction. Data were synthesized across studies with critical attention to outcome measures (as seen in Figure 1).

Figure 1.

Phase 1 methods for rapid review.

Phase 2. DOC Environmental Scan

We conducted an environmental scan of a broad range of DOCs according to their key features including platform, population, subject matter, engagement, and number of followers/subscribers. The methods for phase 2 environmental scan and DOC review can be seen in Figure 2.

Figure 2.

Phase 2 methods for environmental scan and DOC review. Abbreviations: DOCs, diabetes online communities; ADCES, Association of Diabetes Care and Education Specialists; PWD, people with diabetes.

Eligibility criteria

Diabetes online communities were included if they stated their primary function was to provide online peer support or information for PWD and had an interactive platform with DOC users and engagement (defined as having a viewable comment or share) within the past 7 days from site visit. Diabetes online communities which did not offer an interactive component, such as blogs with no comment section, were excluded.

DOC selection criteria

Diabetes online community platforms with posts in English were reviewed and included blogs, Facebook, Instagram, and Twitter.

Data collection

Survey data on file at ADCES from key stakeholders were initially examined.¹⁴ The original survey was distributed in 2020 by the ADCES Peer Support Workgroup and DOC community leaders via e-mail and social media platforms. Survey respondents self-reported population served, platforms, purpose of DOC, and partnerships. Twenty-five distinct DOCs were identified for the initial review. Each author also conducted their own search to identify additional DOC sites based on research knowledge and clinical experience.

Data reporting

All DOCs meeting inclusion criteria underwent data extraction to record: social platform, population (type 1 diabetes [T1D] or type 2 diabetes [T2D], pediatric, and pregnancy in diabetes/gestational diabetes), content (information, technology, support), and number of followers. Additional information describing unique features pertinent for HCPs was also identified.

DOC quality assessment

Diabetes online community interactivity is associated with user engagement and therefore was used as an indicator of quality of DOC platforms.^4-7 Bidirectional features such as comments, likes, and shares were considered interactive compared with traditional Web sites which serve as a static repository of information.

Results

Phase 1: Rapid Review

After an initial yield of 182 citations, 94 full-text articles were examined. Twelve studies meeting all criteria were included.^15-26 Studies were global in nature, and included 4097 participants from the United States, China, and Europe. Study summaries are presented in Tables 2 and 3. Do-it-yourself (DIY) noncommercial, opensource hybrid closed loop systems users form a unique and homogenous DOC community, and those (eight in total) results are presented separately (Table 3). Out of four DOC studies not involving DIY users, one focused on T1D,¹⁸ another on T2D,¹⁵ and two studies included both T1D and T2D.^16,17 All studies reported cross-sectional survey results with self-reported outcomes, with one paper comparing outcomes of two groups.¹⁸

Table 2.

Characteristics of DOC Studies and Outcomes.

Author	Methods	Population	Outcome	Result
Chen et al¹⁵	Cross-sectional online survey	T2DN = 1241China	DSM Self-reported	DSM: self-efficacyParticipants with high self-efficacy:Spent more time paying attention to group information (P < .05)Spent more time viewing group information (P < .05)Had a greater degree of interaction with group members (P < .05)
Herrero et al¹⁶	Cross-sectional online survey	T1D + T2DN = 307T1D28 DOC users52 DOC nonusersT2D144 DOC users61 DOC nonusersSpain	DSMHealth care useDM-related complicationsSelf-reported	DSM: glucose management, dietary control, physical activity, diabetes careLower overall health care use scores and DSM scores for DOC users compared with nonusers (P = .000):Highly significant for T2D (P = .000);Not significant for T1DComplications: suffering hypoglycemia, hyperglycemia, microvascular, and macrovascularAll DOC users (T1D and T2D) reported more complications compared with nonusers
Litchman et al¹⁷	Cross-sectional online survey	T1D + T2DN = 183T1Dn = 129T2Dn = 33LADAn = 21US (82.5%)	A1CSelf-reported DSMMeasured QOLMeasured	DSM: diabetes self-care measured by self-care inventoryQOL: HrQoL measured by short form 12 surveyDOC use reduced the odds of A1C >7%DOC users: higher self-care scores compared with norms for diabetes (P < .001)Positive correlations between self-care scores and DOC engagement scores (r = .170, P = .02), DOC intensity scores (r = .236, P = .002)DOC users: higher HrQoL scores (both physical and mental components) compared with norms for diabetes (P < .001).
Oser et al¹⁸	Cross-sectional online survey	T1DN=282Blog+ 214Blog− 68US	A1CSelf-reported	A1C was lower in:blog readers (7.0%) vs blog nonusers (7.5%), P = .006; insulin pump users (7.0%) vs MDI (7.7%), P = .001; CGM users (7.0%) vs CGM nonusers (7.5%), P = .001

Abbreviations: CGM,continuous glucose monitoring; DOC, diabetes online community; DSM, diabetes self-management; DM, diabetes mellitus; LADA, latent autoimmunity in adults; QOL, MDI, multiple daily injections; quality of life; HrQoL, health-related quality of life; T1D, type 1 diabetes; T2D, type 2 diabetes; A1C, glycated hemoglobin.

Table 3.

Characteristics of DIY DOC Studies and Outcomes.

Ref.	Methods	Population	Outcome	Result
Braune et al¹⁹	Cross-sectional online survey of caregivers of children	T1DN = 20921 countries (74% Europe)	A1CTIRSelf-reported	Median duration of DIYAPS:• 7.5 (SD: 10.0) monthsFollowing DIYAPS initiation:• A1C levels decreased from 6.91% (SD: 0.88%) to 6.27% (SD: 0.67) (P < .001);• TIR increased from 64.2% (SD: 15.94) to 80.68% (SD: 9.26) (P < .001)
Lee et al²⁰	Cross-sectional online survey	T1DN = 115778% US	A1cDSMQOLSelf-reported	A1C reduction after Nightscout adoption: about 1% lower (P < .001) across all age groups• 0.8% for 1-5 y/o• 0.9% for 6-12 y/o• 1% for 13-17 y/o• 0.8% for ≥18 y/oDSM: number of bs checks, giving prandial boluses• All improved after APS adoption (P < .001)QOL: defined as spending time doing normal activities including time at work and with friendsImproved in all
Litchman et al²¹	Netnography study of OpenAPS online conversations over two years	T1DN = 329US	A1CGVQOLSelf-reported	Those who tweeted about their A1C in the current tense A1C range was 4.9%-6.8% (n = 110)OpenAPS users and their caregivers reported a reduction of diabetes-related “burden” or “distress.”
Jeyaventhan et al²²	Retrospective observational study comparing DIY vs Medtronic 670 G	T1DN = 68670G: 38APS:30UK	A1CHypoglycemiaTIRMeasured	APS users compared with 670G users after using insulin pump for ≥6 mAPS users had:• Improved A1C (median: 0.9% [IQR: 0.4%, 1.1%] vs 0.1% [IQR: 0.7%, 0.2%], P = .004)• Improved TIR (mean: 78.5%, SD ± 12.0% vs 68.2% ± 14.7%, P = .024)Both systems showed minimal hypoglycemia
Hng and Burren²³	Online survey	T1DN = 19“loopers”	A1CTIRHypoglycemiaSelf-reported	Outcomes measured as % participants reporting improvement after APS adoption:• TIR: 100%• Sleep (79%)• Hypoglycemia (74%)• A1C (68%)Confidence (47%)
Melmer et al²⁴	Retrospective observational study	T1DN = 34	TIRHypoglycemiaA1CGVMeasured	After changing from SAP to oAPS, participants had:• Lower mean glucose (−0.6 ± 0.7; P < .0001)• Lower estimated A1C (−0.4 ± 0.5%; P < .0001)• Higher TIR (+9.3 ± 9.5%; P < .0001)• Less time in hypoglycemia (−0.7 ± 2.2%; P = .0171)GV measured as lower coefficient of variation (−2.4 ± 5.8; P = .0198)
Street²⁵	Online survey	T1DN = 25374.4% adult25.6% <16 y/o	TIRMeasured	Avg duration of APS use:10.3 mTIR measured prior to APS adoption and within 3 m of survey• Mean increase in TIR 17.3% (SD: 13.7%) (P > .005)• No significant difference between age groups, gender, or diabetes duration group
Wu et al²⁶	Retrospective cohort study	T1DN = 15AdultsChina	A1CTIRGVQOLDiabetes distressMeasured	Before and 3 m after android APS use• A1C reduced (6.79% [SD: 1.29] vs 7.63% [SD: 1.06], P = .002)• TIR improved (75.01 ± 10.13 to 84.28 ± 6.92, P < .001)• GV (SD, MAGE) improved• A lower level of fear of hypoglycemia (P = .010)

Abbreviations:APS, software applications, oAPS/Open APS, open software applications where user directs functions, such as twitter and instagram sites; DIY, do-it-yourself; DOC, diabetes online community; T1D, type 1 diabetes; TIR, time in range; DIYAPS, do-it-yourself artificial pancreas system; DSM, diabetes self-management; GV,glucose value; MAGE, mean average glucose excursion;QOL, quality of life; IQR, interquartile range; A1C, glycated hemoglobin.

Clinical outcomes

In non-DIY DOCs, two studies reported A1C results^17,18 Controlling for insulin pump and continuous glucose monitor use, those who read blogs had lower A1Cs compared with those who did not read blogs.¹⁸ Litchman et al¹⁷ found that the significance of engagement predicted A1C by showing that people who engage with DOCs are less likely to have an HbA1c above 7%. All DIY studies reported improvement in metrics after APS adoption (Table 3). Seven reported A1C/estimated A1C,^19-24,²⁶ six reported time in range (TIR),^19,22,^24-26 and three reported hypoglycemia.^22-24

Behavioral outcomes

Three studies reported behavioral outcomes.^15-17 In two studies, DOC use was associated with higher self-efficacy.^15,17 Chen et al¹⁵ identified that among Chinese participants, high self-efficacy correlated with positive DOC experiences (spending more time paying attention to group information, viewing group information, and having a greater degree of interaction with group members, all P < .05). In the Spain-based study, Herrero et al¹⁶ found that participants with T2D but not T1D, who used DOCs, had lower diabetes self-care levels compared with those who did not use DOCs and reported a higher degree of diabetes-related complications. Conversely, Litchman et al¹⁷ found that DOC use (engagement and intensity) among participants with T1D, T2D, and latent autoimmunity in adults (LADA) (combined in the analysis) was associated with higher self-management scores when compared with diabetes norms.

Psychosocial outcomes

Quality of life (QOL) was examined in four studies, three out of those in DIY users. Instruments for QOL assessment varied between studies and included health-related QoL (HrQoL),¹⁷ self-assessed QOL including the ability to spend time doing normal activities,¹⁸ self-described reduction in diabetes-related burden or distress,²¹ or measured hypoglycemia fear scale, and diabetes distress scale.²⁶ Higher quality of life was identified in DOC users when compared with population norms¹⁷ Three DIY-dedicated DOCs studies reported improvement in QOL^20,21,26 and one reported improvement in diabetes distress, and fear of hypoglycemia after APS adoption.²⁶

Results of Phase 2: Identify and Describe Key Features of DOCs to Facilitate HCP Navigation

An internal environmental scan survey administered by ADCES from November 8, 2020, to December 22, 2020, received responses from 25 DOC group leaders (data on file).¹⁴ Of those, seven were omitted from final review due to the noninteractive nature of platform not meeting study definitions of a DOC, leaving 18 for comprehensive review. Authors identified additional 29 DOC sites by cross-referencing survey site platforms and cited partners. After condensing DOCs with a presence on multiple platforms and eliminating noninteractive DOCs, a total of nine DOCs were added to the original list of 18. A total of 27 DOCs were included and the reporting of the DOC characteristics resulted in a DOC taxonomy (Table 3).^27-53

Only one DOC had a blog with interactive features consistent with other DOC platforms.³⁸ While 21 DOCs are housed on more than one platform, Facebook had the most followers on 14 of the 27 DOCs. Instagram dominated on four DOCs and Twitter dominated on one DOC. Moderator functions are available to DOCs using the Facebook platform only, where 3 of the 19 DOCs appeared to be using moderators.^32,36,48 Content of DOCs varied. Two were solely technology focused^32,53 2 were support focused,^34,41 2 were information focused,^28,45 and the remaining 22 sites were focused on more than one content area. Several subtopics were observed within the scope of the information, support, and technology content areas, including diet, exercise, new diagnosis of diabetes, maturity-onset diabetes of the young, LADA, and gender and minority perspectives.

Discussion

This article builds upon a previous scoping review, adding a narrow focus on quantitative metrics, and is the first, to our knowledge, to comprehensively review DOCs for content and target population for the purposes of facilitating HCP utilization.⁵

While our results are encouraging, overall, there is a paucity of information on the impact of DOC use. Data support an association between DOC use and improved clinical outcomes. DOC use may offer a mechanistic pathway for improving self-efficacy, however, as suggested by Chen et al,¹⁵ may relate to the end-user experience. In an analysis of an in-person peer support intervention, self-efficacy was associated with both reduced diabetes distress and improved glycemic outcomes⁹ and future DOC research should assess for these outcomes. The association between self-management and DOC use is unclear and warrants further examination based on diabetes type, presence of complication, and country of origin. While evidence indicates most DOC users report DOCs are helpful with minimal harm, qualitative findings suggest stigma-based infighting between those with T1D and T2D may impact experiences of DOC users.^54-56 Future studies should determine how DOC engagement, both positive and negative experiences, impact diabetes outcomes. Specific to DIY-related DOC use, reported outcomes may reflect participant self-selection, who were highly motivated and meeting diabetes targets prior to DOC and/or DIY adoption.¹⁷ Improvements in glycemic outcomes were impressive due to good control at baseline; it is unknown if similar improvement in outcomes would be achieved in a cohort with poorly controlled diabetes.

As DOCs are available on singular and multiple platforms across the social media spectrum, the question is raised if one platform offers distinct advantages over another. Oerum¹¹ noted that various platforms meet different user needs and preferences and recommends that users determine DOC choice by platform and then content as a secondary choice. Many DOC sites are centered on a Web site blog, linked to multiple platforms, such as Facebook, Instagram, and Twitter, and therefore serve as a hub to facilitate DOC engagement. In addition, blogs have helpful topic searches and other engaging elements including posting popular search topics. Some DOCs post unique content on various platforms, though most share the same content across all DOC platforms.

Another question of importance is what is the role of DOC within other support systems and what is the optimal way to utilize them. Diabetes self-management and support (DSMES) provided by certified diabetes care and education specialist is a standard of care.¹⁰ Although evidence indicates most DOC users continue to see their diabetes clinician regularly and trust their diabetes clinician more than content found in DOCs, how DOC use relates to formal DSMES programs attendance is unknown.⁵⁷ It is possible that DOCs supplement DSMES, but for some, the information found on DOC platforms may be in lieu of formal DSMES. In addition, some PWD are seeking content they do not receive in the clinical environment, along with an alternative platform and peer-to-peer delivery. Diabetes online communities offer easy access to ongoing support for PWD. In related diabetes lifestyle clinical interventions, support was found to be a contributing factor influencing adherence to change in addition to psychosocial outcomes.^5,57 Furthermore, it would be valuable to have a validated tool to identify patient DOC support needs. Community Advisory Boards (CABs) are relevant in developing research questions and tools for PWD. Many studies did not use CAB, and therefore have selection bias; hence, questions are biased to clinician perspective.

Gap in Translation to Clinical Practice

There remains a disconnect between recommended resources on ADCES and what patients want from DOC resources. Clinicians/Educators take part in DOCs but rarely (one in three) recommend DOC to PWD.

Currently, there is more evidence for use of DOCs in T1D populations than T2D populations.^7,57 Some T2D populations report negative experience with DOCs, likely related to a mismatch of population and content, and therefore, an HCP should recommend T2D content focused DOCs.

Limitations

The rapid review is not without limitations. Studies had major limitations inherent to their cross-sectional cohort design and self-reported outcomes and only show associations with outcomes and not causation. Notably, there were no longitudinal prospective observational studies or randomized control trials.

Glycemic outcome review is limited by the paucity of evidence. Despite the rise in DOCs, funding for DOC research is scarce and necessary to develop more robust examination of how DOC use impacts clinical, behavioral, and psychosocial quantitative outcomes.

We also acknowledge that the goal of making a current, complete, and inclusive list of DOCs may be impossible to achieve. By nature, the DOC is ever-changing and there are likely thousands of mini-DOCs in the United States alone. Searching keywords such as “diabetes” in Facebook, for example, generates a plethora of public and private communities. Because an exact number is not given, it would be exceedingly difficult to calculate. Platforms, including Reddit, Snapchat, WhatsApp, and TikTok, were not included due to platform-specific privacy restrictions which were prohibitive for reviewers. This review is limited to published literature, social media searches, and inextricable bias of personal experience of English-speaking diabetes specialist authors, and the phase 2 environmental scan survey was self-reported by DOC members. Due to this gap in representation of specific communities, sites were likely missed.

Clinical Considerations for Prescribing DOCs

Based on our findings and the findings of others, there are ten factors that clinicians should consider when prescribing DOCs.¹²

Privacy. While some DOCs are private, others are public. People with diabetes must understand the differences before sharing personal health information in DOCs.

DOCs are dynamic. The composition and content of DOCs are ever-changing, and therefore, DOC navigation may present challenges for new and veteran users as well as clinicians trying to prescribe a particular site.

Pace: Some DOC sites move faster than others. For example, the #DSMA twitter chat, which has occurred every Wednesday evening at 9 PM ET since July 2010 is fast paced, while asynchronous platforms (eg, Facebook) are much slower in pace.

Commercialization. Commercial sponsors and opportunists for-profit may permeate some DOCs. People with diabetes seem to have little circumspection toward these sites, as evidenced by number of followers.

Quality of DOC Information. While diabetes misinformation does exist online, rates of misinformation is low within DOCs and users continuously “self-police” to improve the quality of information shared among users.

Cyberbullying. Diabetes online community infighting has been described. Those with T2D may be especially at risk due to higher rates of social stigma.

Access. Due to limited Internet access, language limitations of DOC sites, or other factors, DOCs may not be accessible. While this review is limited to English only, there are DOCs in multiple languages.

Attitudes: Not all PWD need or desire DOC use. Some PWD may have negative experiences with previous social media use or may not be interested learning about the experiences of others with diabetes.

Content: May be broad or focused. Diabetes online communities may be multitopic and have search engines (Facebook, blogs) or may be focused on one topic (eg, exercise or low carb diet). While a range of topics, which present in a Twitter or Instagram feed, may be engaging for an experienced PWD, diverse content may be overwhelming for a newly diagnosed PWD who might prefer a blog format with search engine to navigate specific areas of interest.

Culture. Finding the right fit to a DOC is important; we noted groups focused on a particular gender, ethnicity, age group, or lifestyle interest. Poor culture fit may negate benefits of DOC participation.

Tailoring your DOC recommendation to the PWD’s individual needs is encouraged. Using Table 4 as a guide, clinicians should consider the type of platform, type of diabetes, and preferred content the patient will benefit from. See Table 5 for detailed recommendations.

Table 4.

Diabetes Online Community Sites.

DOC	Description	Number of followers per platform				Population focus	Content focus	Recommendation consideration
DOC	Description	Blog	Facebook	Instagram	Twitter	Population focus	Content focus	Recommendation consideration
American Diabetes Association²⁷	Provides information translating guidelines for evidence-based management	Yes	778.3K	48.3K	142.7K	T1D, T2D	I, S	Twitter content features breaking news. Blog links to a wealth of research articles.
ASweetlife²⁸	Focused on low carb lifestyles	Yes	43K	1.1K	4.7K	T1D, T2D, PED	I	Offers recipes
bastheboss²⁹	A female college student sharing her experience with diabetes			3.1K		T1D	S, T	Peer modeling theme focused on self-care, empowerment
BeyondType1³⁰	A user friendly, well-organized Web site hub linking to multiple population-specific, resources, breaking news, and advocacy	Yes	1.1M	104K	23.4K	T1D, T2D, PED, PRG	I, S, T	Instagram account is focused on sharing stories. Web has link for new diagnosis, pregnancy, autoimmune in addition to T1D, T2D
blackdiabeticinfo³¹	Informing about diabetes in black communities	Yes	814	2.9K		T1D	I, S	Blend of professional and peer resources committed to cultural competence
CGM in the Cloud³²	The Nightscout Foundation group to share experiences with opensource DIY technology.		35.4K			T1D	T	Private group. A resource for people using DIY and any interested in starting the technology prior to beginning
Children with Diabetes³³	A community resource for kids and adults with diabetes.	Yes	16K	9K	15.8K	T1D, PED	I, S	Users may submit questions to an expert team.
College Diabetes Network³⁴	A Web site hub linking college students to local chapter groups associated with their school.	Yes	6.8K	5.9K	5K	T1D	S	Web site offers peer support materials for various topics including mental health
Connected in Motion³⁵	Experiential diabetes education via in-person adventures.	Yes	5.2K	4.8K	2.4K	T1D	I, S	Canadian site. Connects PWD in person via adventure trips and utilizes DOC forum to keep connected.
Deaf Diabetes Ed ASL Vloggers And Kidneys³⁶	American sign language video blog community		1.6K			T1D, T2D	I, S	Dedicated to care of deaf community. Moderated for content etiquette and privacy
#diabetes³⁷	An engaging platform, where the hashtag will pull various content into feed			5.9M		T1DM T2D	I, S, T	Allows for quick exposure to a wide variety of relevant information in a visually engaging format.
Diabetes Daily³⁸	A Web site with health- and empowerment-focused content.	Yes	431K	5.7K	62.7K	TID, T2D, PED, PRG	I, T	Web site blogs allow readers to interact and comment. Will send weekly e-mail updates.
#diabeticsdoingthings³⁹	A hashtag which will pull various content into feed, with a fitness focus.			14.2K			I, S,T	Peer modeling and motivation to engage in physical activity
Diabeticsdoingthings⁴⁰	Telling personal diabetes success stories			14.7K		T1D	I, S, T	Users will relate to a diverse racial and cultural audience
#diabetesstrong⁴¹	Hashtag with varied content posted			25.3K		T1D, T2D	S	Focuses on motivational support showcasing daily life with diabetes
Diabetes Strong⁴²	Author is a woman with T1DM featuring fitness and nutrition content	Yes	19K	27.7K	2K	T1D	I, S, T	Recipes linked on site. Author sells cookbooks, eBooks YouTube
Diabetes Sisters⁴³	Community of women with all types of diabetes	Yes	11K	6.3K	1203	T1D, T2D, PED, PRG	I, S, T	Offers opportunity for in-person and online community meetings
diaTribe⁴⁴	Blog Web site and social media network that provides peer perspective on breaking treatments and technology	Yes	46.5K	3.5K	19.7K	T1D, T2D, PED, PRG	I, S, T	User-friendly readability, translates cutting edge information through the PWD’s perspective
diabeteswhattoknow⁴⁵	Provides lifestyle-focused content for T2D	Yes	49.9K			T2D	I	Emphasizes family support of T2D lifestyle management
JDRF⁴⁶	Research and advocacy for curing diabetes focused to bring new therapies and support to T1DM	Yes	226.6K	72K	63.2K	T1D, PED	T1D	Local chapters offer opportunity for PWD to connect in their community
Letmebe83⁴⁷	Author is a mom of child with T1DM, shares her personal philosophy about carbohydrate diet and resources	Yes	226.7K	3.1K	487	T1, PED	I, S	Author promotes carbohydrate restriction and endorses self-selected products
Project Blue November⁴⁸	T1D advocacy focus	Yes	74K	19.1K	5.8K	T1D, PED	I, S	Focuses on awareness and empowering T1D advocates through storytelling and charitable projects
Taking Control of Your Diabetes⁴⁹	HCPs with diabetes who provide online education and in-person conferences, bringing HCP and PWD together	Yes	1.1K	11.2K	5K	T1D, T2D	I, S, T	Links to humorous videos and tutorials about all aspects of diabetes and features a Facebook page for bothT2D and T1D
Thehangrywoman Mila Clarke Buckley⁵⁰	Author is a food writer with LADA diagnosis, initially diagnosed as T2D	Yes	18K	38.9K	3.9K	T1D, T2D	I, S	Advocates for healthy coping and self-image
T1Dexchange⁵¹	Source of information for PWD and HCP focused on outcomes for T1D population through research and advocacy	Yes	10.6K	5.1K	9.3K	T1D	I, S, T	Current topic searches are updated in real time on Web site. PWD can register for research initiatives.
Type1livabetic⁵²	Author is a college student who shares his life experiences with T1DM			17.6K		T1D	S	Offers peer modeling and motivational content about daily life with T1DM
#wearenotwaiting⁵³	A hashtag which brings feed of DIY technology community postings			12.1K		T1D, PED	T	Relevant content for current and prospective users of DIY technology

Abbreviations:ASL, American Sign Language; CGM,continuous glucose monitoring; DOC, diabetes online community; JDRF, juvenile diabetes research foundation; PGT1D, type 1 diabetes; T2D, type 2 diabetes; I, information; S, support; T, technology; PED, pediatrics; PRG, pregnancy; DIY, do-it-yourself; HCP, health care professionals; PWD, people with diabetes; LADA, latent autoimmunity in adults.

Table 5.

Recommending a Diabetes Online Community for People Affected by Diabetes.

1. Consider the right platform for the individual.If the person prefers a particular platform, start there. If the person is social media naïve, consider choosing by best-fit platform, considering the features of varied platforms:• Blog/Web site is best for persons with little desire to be seen or share personal diabetes experiences in the DOC and/or PWD who are newly diagnosed or newly motivated and are primarily seeking information. The Web site format is a valuable resource which has a search feature and often, an indexed menu of topics. Direct users to find the Web site in a Google Search or linked to the social media accounts of a particular DOC (Facebook, Instagram, Twitter) profile.• Facebook is most public and easy to find others and has higher engagement with older users. Those who enjoy reading articles but also want engagement and ability to share easily may find Facebook a good fit.• Instagram is ideal for PWD who are not sure what they want to learn or follow yet, as they can follow a hashtag and it will bring them content and suggestions. Instagram is more visually focused and has text limitations, which make it a good fit for PWD who are overwhelmed easily and those who learn visually versus by reading.• Twitter offers some of the networking features of Facebook and Instagram but is text-driven. Twitter is ideal for PWD who want to actively follow a particular issue or area of diabetes such as technology updates.

2. Consider the type of diabetes.Many platforms offer content appropriate for several types of diabetes, while others are specific to one or two populations. For new diagnosis, it may be overwhelming for a PWD to navigate a DOC which includes a variety of populations.

3. Select the DOC offering preferred content.Once you have selected a DOC platform and found selections targeting type of diabetes, you can offer PWD a specific selection of DOC recommendations relating to the themes wanted, including information, support, and technology.

Abbreviations: DOC, diabetes online community; PWD, people with diabetes.

Conclusion

The DOC serves as a no-cost, 24 hours a day resource for PWD and their families. The use of DOCs for PWD may lead to improved glycemic, behavioral, and psychosocial outcomes. Thus, engagement in DOCs can be recommended for PWD and their families. Choosing the optimal DOC that would meet the specific need of a PWD remains a challenge. Health care professionals are encouraged to promote and prescribe DOCs for PWD using Table 4 as a guide to individualize referrals. More research is needed to determine the scope of benefits and best-fit features for varying diagnosis and other conditions of diabetes. The mechanism by which DOC use may lead to improved outcomes warrants more study. Funding opportunities focused on studying DOC outcomes and clinical integration are needed to support this gap in research.

Footnotes

Acknowledgements

Thank you to the Association of Diabetes Care and Education Specialists (ADCES) for contributing diabetes online community survey results from the ADCES Peer Support Workgroup 2020.

Abbreviations

A1C, glycated hemoglobin; ADA, American Diabetes Association; ADCES, Association of Diabetes Care and Education Specialists; CAB, Community Advisory Boards; DSM, diabetes self-management; DSMS, diabetes self-management and support; DIY, do-it-yourself; DOC, diabetes online community; HCP, health care provider; HrQoL, health-related quality of life; I, information; LADA, latent autoimmunity in adults; PED, pediatrics; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PWD, people with diabetes; QOL, quality of life; S, support; T, technology; T1D, type 1 diabetes; T2D, type 2 diabetes; TIR, time in range.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Michelle Litchman

Deborah Greenwood

Andjela Drincic

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Navigating Diabetes Online Communities in Clinical Practice

Abstract

Objective:

Methods:

Results:

Conclusion:

Keywords

Background

The “S” in DMSES Is for Ongoing Support

Methods

Phase 1: Rapid Review

Eligibility criteria

Search strategy

Study selection

Phase 2. DOC Environmental Scan

Eligibility criteria

DOC selection criteria

Data collection

Data reporting

DOC quality assessment

Results

Phase 1: Rapid Review

Clinical outcomes

Behavioral outcomes

Psychosocial outcomes

Results of Phase 2: Identify and Describe Key Features of DOCs to Facilitate HCP Navigation

Discussion

Gap in Translation to Clinical Practice

Limitations

Clinical Considerations for Prescribing DOCs

Conclusion

Footnotes

Acknowledgements

Abbreviations

Declaration of Conflicting Interests

Funding

ORCID iDs

References