Amsterdam Center for Social Media

The subtleties of online disclosure:
Not all data is shared equally

By Jeana Frost

Social media and online health communities offer new opportunities for people to share knowledge and garnering answers to questions. Unfortunately, sharing health-related information on one platform heightens the risk of privacy invasions in general.

As a result, patients are left with the question: how and when should I share?

The answer is not intuitive. In our recently published article in the Journal of Medical Internet Research,  Ivar Vermeulen, Nienke Beekers and I find that cancer patients’ preferences for sharing information in online health communities diverge from what people routinely share face-to-face. Namely, patients report greater openness for sharing health data which is usually considered “sensitive” compared to both identifying information and information about daily life that is routinely exchanged face-to-face.

While this behavior may not be completely rational, it is constructive. People are more likely to share the information that has the greatest value for the online health conversation and omit what is not relevant.

Although  privacy researcher provides thoughtful definitions of privacy and examines data security, this study represents one of the first on the patient perspective towards sharing. We find that all information is not viewed equally. Patients perceive different risks across information types and different users have different privacy sensitivities. As within e-commerce sites, patients selectively calculate the costs of participation against the benefits, a process termed the “privacy calculus” (Dinev & Hart, 2006).

Overall, the results are encouraging for health platforms. On the one hand, online communities must account for the user’s wish for selective information sharing. On the other, although people have privacy concerns, the benefits of sharing medical information often outweigh the risks.

Dinev, T., & Hart, P. (2006). An extended privacy calculus model for e-commerce transactionsInformation Systems Research17(1), 61-80.

Frost, J., Vermeulen, I. E., & Beekers, N. (2014). Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities. Journal of Medical Internet Research, 16(5), e126.


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