An Overview of the Role of Social Network Sites in the Treatment of Adolescent Diabetes

Introduction

The Internet has evolved from the information-gathering and relatively static Web sites of Web 1.0 to the much more interactive user experience of Web 2.0, which is based around social media. The platforms for social media are varied and include social network sites (SNS), Internet forums, podcasts, blogs, and wikis, with the only common thread among them being the blending of technology and social interaction. However, of all the different social media platforms, SNS have evidenced the fastest and broadest uptake. A SNS is an Internet-based platform that facilitates the building of social networks or social relations among people. The role of SNS in health care is receiving increased attention, and this article examines the role of SNS specifically in relation to adolescent diabetes management. The review highlights the lack of empirical evidence regarding the efficacy of SNS in adolescent diabetes care and provides suggestions for future research.

The Increasing Role of SNS in Health Care

The advent of the Internet was associated with a significant increase in access to health-related information by non-health professionals. ¹ As the Internet evolved to encompass social media, and in particular SNS, it changed from a medium where patients could simply search for and find health information to a place where patients can interact and provide information for one another. SNS are changing the way in which patients request and access health information, ² with a blurring of the lines between health information seekers and providers. This includes the appearance of online patient expert groups and the development of online communities around particular illnesses or conditions. The role and extent to which health information gathered by patients on SNS substitutes for conventional sources of health information or merely complements them are being increasingly debated. ^2,3 Furthermore, although the benefits of real world (i.e., non-virtual) support from individuals with similar medical conditions have been demonstrated and can include improvements in disease-specific knowledge, better psychosocial functioning, and better quality of life, ⁴ there is also emerging evidence that SNS disease-specific support groups may provide similar benefits to patients. ^5,6

SNS and Adolescent Diabetes Care

How pervasive SNS have become in our everyday lives is demonstrated by, for example, Facebook having over 1 billion active users worldwide, ⁷ and the impact of these sites on health care is becoming increasingly evident. ⁸ A 2009 systematic review of technology-based approaches to patient education for young people living with diabetes identified SNS as an important area for further investigation, ⁹ and although there are currently few empirical studies, there is some evidence that SNS may be an appropriate way to deliver diabetes education and support ¹⁰ with the potential for better glycemic control. ¹¹

Prior to the widespread use of contemporary SNS, online forums were a resource where people could exchange information on particular topics. A 2004 analysis of online forum messages posted by adolescents with diabetes suggested that they were visiting online forums for social support, information, advice, and shared experience. ¹² Contemporary SNS provide all of the supports of these earlier online forums but are much more accessible and easier to use and serve much wider populations.

Social support is an important factor in diabetes management, ⁴ with peer support being particularly beneficial for adolescents with diabetes. ¹³ On-site adolescent peer support groups can utilize the benefits of such support; however, these can be costly to run, time consuming, and difficult to organize. SNS can provide a level of peer support without these financial, organizational, and geographical constraints and, given the extent to which adolescents have embraced this technology (with one study reporting that 95% of adolescents identified themselves as Facebook users), may be particularly useful for this age group. ¹⁴

When attempting to use SNS to support adolescents' diabetes self-management, it would appear logical that any intervention be integrated into the SNS they use frequently. However, several studies have examined the experience of using custom-built SNS. A Swedish group created an Internet portal that contained specific diabetes-related information and social networking functions, such as boards and blogs, for use by invited patients and parents, as well as their relevant healthcare practitioners. Feedback about the experience of using the site indicated that patients and parents found benefit in being able to find reliable information on the site and that it enhanced the peer-to-peer sharing of information. However, restrictions with accessing the portal, such as having to log-in, caused users to drop the portal. ¹⁵ A study in the United Kingdom evaluated usage of an adolescent-designed Web site that provided information and support on diabetes through interactive models, quizzes, an online forum, and a blog. Using Web site usage statistics the researchers were able to identify the frequency that adolescents logged into the Web site and then used this information with semistructured phone interviews to identify facilitators and barriers to Web site use. This indicated that although the adolescents found the online information and support useful, they did not use the Web site as intended, preferring instead mainstream Web sites used in their everyday life. ¹⁶

Using a mainstream SNS, rather than a custom-built one, may be a better platform for engaging adolescents for the purpose of supporting their diabetes management. In this regard, Facebook is currently the most popular of SNS worldwide and in 2011 had over 500 existing diabetes-related groups. ¹⁰ However, using preexisting established SNS (e.g., Facebook or Twitter) rather than constructing SNS specifically for the purpose of a diabetes-specific intervention has implications for the privacy and security of the SNS. Of 34 intervention studies identified in a recent review of SNS (defined very broadly) in the management of patients with diabetes, none used any of the larger established SNS, and the authors speculated that this might have been down to issues of privacy and security on these SNS. ¹¹

Evidence suggests that patient interest in communicating with health professionals through electronic means, such as SNS, is increasing. A survey of more than 7,000 citizens from seven European countries found that an increasing number of people reported using the Internet to request/renew prescriptions, schedule an appointment, or ask a particular health question. Among those using the Internet for health-related purposes, more than 40% considered the provision of these electronic health services to be important when choosing a new doctor. ¹⁷ In a further study, a group of adolescents uploaded the data from their insulin pumps to their clinic from home and were then provided with interventions by their healthcare team via Skype and Facebook, whereas another group downloaded the data from their pump at regular clinic visits, during which interventions were given in person by their healthcare team. The researchers concluded that where new technologies can examine diabetes management similar to regular clinic visits, adolescents reported preferring to communicate with their healthcare providers using SNS. ¹⁸

Prior to the evolution of SNS, mobile phones were highlighted as a valuable tool in healthcare communication technologies for people with type 1 diabetes. ¹⁹ However, the widespread adoption of smartphone technology opens a new avenue for mobile phones as a tool in diabetes management, as smartphones act as an interface for most SNS, thus further extending the reach of SNS into everyday life. Although there is very little research on using smartphones in adolescent diabetes management, a study of adults with type 2 diabetes using cellular technology to mediate interactions between patients and supporters (i.e., family members or friends) to motivate regular self-monitoring of blood glucose found that patients reported improved attention to self-monitoring. ²⁰ However, the effects of the intervention on actual behavior and health outcomes were not examined.

As most health information on SNS is posted by non-healthcare professionals, there remains the potential for inaccurate posting of health-related information. One analysis of the communication (wall posts and discussion topics) on the 15 largest diabetes-management (both type 1 and type 2) Facebook groups found that clinically inaccurate recommendations were infrequent, with only 3% of all posts containing inappropriate or unsupported therapeutic claims. Thirty-six percent of those were found to be related to advertisements for non–Food and Drug Administration-approved products. ²¹ However, other research on this topic suggested that the quality and safety of diabetes-related SNS policies and practices were variable, ²² with concerns about misinformation, the transparency of advertisements on sites, insecure data storage and transmission, and lack of control over personal information.

Lack of Empirical Studies on SNS in Diabetes Management

There remains a notable lack of empirical studies on the effect of SNS in adolescent diabetes management. A 2011 systematic review of communication technologies to promote access and engagement of young people with diabetes into health care only identified one study using Web-based discussion boards that met their criteria. ²³ However, they did suggest that SNS represent a novel opportunity to improve and engage young people in their healthcare delivery, and to be potentially guided by young people themselves.

Furthermore, the diversity of study designs and the range of SNS technologies used makes comparison very difficult. One study that included social networking via a peer forum as part of an intervention found that the mean glycosylated hemoglobin A1c level for the treatment group remained constant, whereas it increased for the control group. In addition, the treatment group showed statistically significant improvements in self-management. ²⁴ However, as the overall intervention included many facets of social media, including online multimedia presentations, e-mail support, and online problem solving, as well as SNS, it is not possible to extrapolate the specific impact of SNS or indeed any specific social media modality.

The lack of a clear taxonomy in relation to social media in general has also led to confusion over what exactly is being evaluated. “Health 2.0” and “Medicine 2.0” are broad terms used to classify how social media technologies, such as SNS, are being adapted to health care; however, there is still no general consensus as to their definition. ²⁵ Indeed, research into the use of social media in health care covers such varied technologies as text messaging, ²⁶ e-mail, ²⁷ SNS, ²⁸ smartphone applications, ²⁹ and automated Web-based communication. ³⁰ For example, one study that looked at peer support in adolescents with type 1 diabetes, via what the authors referred to as social media, concluded that it provided little benefit ²⁷ ; however, the social media in question was individual anonymous e-mail access to a peer with diabetes, and this is not reflective of the scope of contemporary social media. A recent meta-analysis of SNS in the management of patients with diabetes found that SNS interventions beneficially reduced glycosylated hemoglobin A1c levels compared with controls. ¹¹ However, this review used a very broad definition of SNS, and consequently it includes interventions that do not meet the definition of SNS as presented in this article.

Future Research

Future research into SNS in adolescent diabetes care needs to use designs that are more methodologically robust. In particular, they need to include standardized quantitative measures, including health outcomes, behavioral outcomes, and quality of life measures. Furthermore, the relationships between these standardized quantitative measures and levels of engagement with the SNS and the patterns of interaction on the site need to be examined. Study designs also need to be used with comparison groups to directly investigate the use of SNS as an adjunct to standard clinical care against standard clinical care on its own. In addition, the cost-effectiveness of such approaches needs to be determined.

The very rapid and broad uptake of SNS that we have witnessed in recent times may well be followed by an equally rapid and broad shift away from SNS toward a different form of social media. In addition, there is also the potential for a shift between SNS, particularly among adolescents, whose habits are very often dictated by peer conformity. Both of these issues have implications for future research, as the potential redundancy of specific SNS, or SNS in general, may result in reluctance from researchers to formally investigate the efficacy of SNS in the treatment of adolescent diabetes. However, understanding such processes may inform how future technologies can optimally enhance health outcomes, and therefore potential redundancy shouldn't deter researchers from investigating them.

Evolution of the Internet

The next stage in the evolution of the Internet, known loosely as Web 3.0, is likely to be characterized by the “semantic Web” (the sharing and reusing of data across applications), personalization of Web sites, and intelligent searches. This will result in a portable personal Internet where content is more connected and user experiences are unique and tailored. In terms of health care, the move toward Web 3.0 should lead to enhanced interactions between healthcare providers and patients, improved access to health-related information, and an expansion in the role and function of online disease-specific communities. Web 3.0 is likely to see a greater role for SNS in the treatment and management of adolescent diabetes, particularly as a conduit for education, support, and interaction between adolescents and healthcare providers. Although the time scale for this transition is largely unclear, the recent increase in interest in SNS and diabetes suggests that it may be approaching sooner than expected.

Conclusions

The increasing presence of SNS in everyday life is paralleled by their presence and utility in health care, including diabetes management. This rapid uptake and integration of SNS into diabetes management are often occurring independent of healthcare professional involvement and therefore without an evidence-based assessment of its actual efficacy or accuracy as an adjunct treatment modality. There are few published studies on the use of SNS in adolescent diabetes management, and many of those that have been published have not examined the effectiveness of SNS. As such, there is a pressing need for research to evaluate the impact of SNS on standard objective outcome measures such as glycosylated hemoglobin A1c, treatment compliance, knowledge, and quality of life. In particular, future research studies need to use designs that allow for the direct comparison of SNS with conventional approaches in the treatment of adolescent diabetes.