In Online Patient Communities, How Much Sharing Is Too Much?

Lindsay Abrams writes:

When you become a patient, a whole new world of social networking opens up. There’s one site that was described to me as being “like for cancer patients,” because it sorts its users by a/s/l, along with type of cancer and treatment. Another tailors itself to women with breast cancer and provides a space for them to “trade scarf fashion tips and treatment courses.” Other patients directly co-opt Twitter, Pinterest, and Instagram as spaces for building a community.

While some forums, like the one run by the American Cancer Society, take basic discussion-board form — patients post under aliases and are urged not to share any personal identifiers — others embrace illness and recovery as part of a person’s identity. And the more open patients are, the more they may be at risk of exploitation.

Read more on The Atlantic.

The concerns also apply to support communities for spouses and family members. I remember the amazing amount of personal details revealed by parents in groups on usenet years ago as they sought help and support for their children. If we all knew then what we knew now… as many of their posts are still archived forever in Google, where they might come back to bite their child some day.

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