Patients With T1D and HCPs Talk Social Media and Self-Management

Synthesizing 11 qualitative studies, authors present a nuanced picture of how patients with type 1 diabetes (T1D), and the health care professionals (HCPs) who treat them, feel about using social media platforms as a self-management tool—and where improvements can be made.

Young adults using social media | Image Credit: Alessandro

Some health care practitioners encourage their patients with T1D to use social mediconnect with their peers and gain different perspectives on T1D treatment | Image Credit: Alessandro

Social media can certainly provide peer support, encouragement, and practical advice to young people self-managing their type 1 diabetes (T1D), according to new research results in JMIR Pediatrics and Parenting.1 Among patients’ concerns, however, are overall safety and maintaining privacy online when their health care providers (HCPs) might have access to some of their online activities.

Considering that and other apprehensions on the parts of both patients and HCPs, existing guidelines about using social media safely to help self-manage T1D should be updated, declared the authors. They drew their conclusions after performing a thematic synthesis of 11 studies: 9 qualitative and 2 mixed methods, 10 focusing on young people with T1D and 1 on HCPs.

Analytic Themes and Descriptive Subthemes

  • Differences in how young people interact with social media (passive vs active user engagement, levels of T1D disclosure)
  • Characteristics of social media platforms that influence their use and uptake for T1D self-management (easier access to information and peer support, platform design, trustworthiness)
  • Social media as a source of information (catering to diverse information needs, learning from peers’ experience, educating others)
  • Impact on young people’s coping and emotional well-being (emotional support from peers, humor and hope)
  • Impact on support from and relationships with HCPs and services (more direct support from HCPs, better HCP-patient relationships, potential privacy concerns)

Novel findings. No previous systematic literature review had examined both the perceptions of young people with T1D and of HCPs regarding the use of social media in T1D self-management. The authors’ review yielded 5 analytic themes and 13 descriptive subthemes.

Among many other points, the review revealed that although some HCPs advise against patients’ social media as part of T1D self-management, other HCPs encourage patients to use social media to connect with peers, gain diverse perspectives on T1D treatment, and make use of HCP-moderated online platforms.

The synthesis also found diverse patient attitudes on HCP involvement via social media in self-management: Some felt HCP involvement would enable tailored support, whereas others worried about potential scrutiny of their social media posts. Also, “in contrast to previous research, we did not find many concerns related to misinformation,” although the sources that patients with T1D access online “may contain information that is not necessarily accurate,” the authors noted.2

Going forward. The authors firmly believe that “HCPs should consider integrating customized peer-to-peer mechanisms into traditional services to provide better health care.” They gave examples: Moderated social media online forums and Facebook groups such as Diabetes UK and Diabetes Yes “have created online communities that provide professional-reviewed knowledge and real-life experiences from peers that complement medical care,” they explained. “HCPs could recommend that their patients access these platforms to get information and peer support between clinic visits. Meanwhile, they could participate in moderated online groups to communicate with and support their patients.”

On the other hand, the researchers noted that social media platforms and HCPs should take the responsibility of trying to educate young people on how to identify credible vs noncredible online health information about T1D. They also noted that the articles they reviewed did not have enough information about how patients could protect themselves online from levels of HCP involvement that they found uncomfortable.

To health care policymakers, the team suggested 4 informed consent patient-protection procedures that could be added to existing guidelines:

  • Inform patients of the risks and best practices of using social media for T1D self-management
  • Emphasize that patients can opt out of HCPs’ involvement in their social media T1D self-management
  • Provide clear conduct guidelines for HCPs
  • Establish formal reporting channels for patients’ concerns over uncomfortable interactions, boundary violations, or privacy issues


1. Ma Y, Law K, Hassan L, Nenadic G, van der Veer SN. Experiences and views of young people and health care professionals of using social media to self-manage type 1 diabetes mellitus: thematic synthesis of qualitative studies. JMIR Pediatr Parent. 2024;7:e56919.doi:10.2196/56919

2. Malik FS, Panlasigui N, Gritton J, Gill H, Yi-Frazier JP, Moreno MA. Adolescent perspectives on the use of social media to support type 1 diabetes management: focus group study. J Med Internet Res. 2019;21(6):e12149. doi:10.2196/12149

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