Research Design Service: East Midlands
National Institute for Health Research
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Research shows social media is beneficial for sharing and building upon patient experiences

  Created on Tuesday, 22 Mar 2016. Posted in Literature | Impact

Twitter, Facebook and other social media platforms can be useful tools for helping patients with rare medical diseases exchange knowledge and build communities. 
Not only is patients’ knowledge valuable for peer support within patient communities, it has the potential to add to traditional medical knowledge, especially in cases where this is limited – such as in the case of rare diseases.

The study ‘Health Activism and the Logic of Connective Action. A Case Study of Rare Disease Patient Organisations’, was supported by the Wellcome Trust and published in the journal Information, Communication and Society.