Every year, millions of people in the EU are affected by (chronic) illnesses. Managing these illnesses is often not an easy task that requires robust support. For these patients, self-management is a constant balancing act. Patients are increasingly turning to social media for the support and advice they need. A recent project by four FEB researchers, reveals something interesting: when it comes to online patient support, bigger is not always better. In fact, smaller communities can offer unique advantages.

Smaller is better

Chronic illnesses do not just affect patients physically, they also bring cognitive, emotional, and social challenges that require daily self-management. While traditional healthcare provides essential medical care, patients are supplementing this with social media health communities that can offer them emotional support, practical advice, and a sense of belonging. But not all communities are the same, according to assistant professor Edin Smailhodžić: “Our research shows that the size and openness of these communities fundamentally shape the type of support patients receive. We analyzed two types of online communities that differed in their size and openness, namely a small and closed community and a large and open online health community. The differences between two were significant.

In the small and closed group, we observed what we refer to as intimate support. Privacy and controlled membership afforded a safe and trusting environment where patients felt comfortable sharing deeply personal stories about their struggles and treatment setbacks, but without fear of judgment. Members offered personalized advice, emotional validation, and even developed offline connections, meeting for coffee or group activities. The support was deep and meaningful, though perspectives were limited to the group’s shared experiences.

In the large and open community, we identify what we refer to as expansive insight. Anonymity and a large user base provided access to diverse perspectives and a wide range of information. Patients discussed alternative treatments, navigated healthcare systems, and explored sensitive topics, all while maintaining privacy. The breadth of information was broad, but the support was less personal, and the volume of advice could sometimes feel overwhelming.”

Tailored advice and support

The findings have important implications for patients, healthcare providers, and community designers. For patients, the choice of community depends on their needs. Need emotional connection and tailored advice? A smaller and closed group may be ideal. Want diverse perspectives and anonymity? A larger and open platform might suit them better.

Smailhodžić points out that the research outcomes are also interesting for healthcare providers. “They can recommend communities more thoughtfully and guide patients toward the type that best fits their current needs whether it is emotional support or access to broad information.

Furthermore, community designers can consider developing hybrid models that combine the emotional safety of closed groups with the information richness of open communities. Sub-communities within larger ones could offer the best of both worlds.”

Social media health communities are powerful tools for patient self-management. However, their effectiveness depends on their design and characteristics. Small and closed communities foster deep emotional connections and personalized support, while large and open communities provide diverse information and anonymity. The key is matching the community to the patient’s needs and perhaps designing future communities that offer the best of both.

For more information, please contact Edin Smailhodžić – e.smailhodzic rug.nl

References:

Smailhodzic, E., Boonstra, A., Langley, D. J., & Fabian, N. (2026). Intimate support or expansive insight? How social media community openness and size shape patient self-management.  European Journal of Information Systems. DOI: https://doi.org/(...)960085X.2026.2616039