Hanging with the ‘The Chronics’ Online: Autopathography and Narrative Associations in an Online Support Group for Chronic Lymphocytic Leukemia
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This paper forms part of the digitally archived conference proceedings from the Understanding Chronicity Conference at Mansfield College, Oxford University in August, 2012. Presenting early findings from a two year project mapping narrative engagement, mediation and translation in online networks of chronic lymphocytic leukemia patients and carers, the study explores a range of narrative forms online including multi-media patient stories, medical research papers, and clinical test results. The work triangulates autopathography with observations drawn from around 300 consenting CLL patients globally to map current issues for this patient group and their carers, illuminating the evolving phenomenon of e-patienthood in a rapidly evolving biomedical environment. An actor network approach facilitates mapping of complex scientific research papers, laboratory test results, and the political economy of contemporary medicine intersect with patient stories, observation and advice across multi-me
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This paper forms part of the digitally archived conference proceedings from the Understanding Chronicity Conference at Mansfield College, Oxford University in August, 2012. Presenting early findings from a two year project mapping narrative engagement, mediation and translation in online networks of chronic lymphocytic leukemia patients and carers, the study explores a range of narrative forms online including multi-media patient stories, medical research papers, and clinical test results. The work triangulates autopathography with observations drawn from around 300 consenting CLL patients globally to map current issues for this patient group and their carers, illuminating the evolving phenomenon of e-patienthood in a rapidly evolving biomedical environment. An actor network approach facilitates mapping of complex scientific research papers, laboratory test results, and the political economy of contemporary medicine intersect with patient stories, observation and advice across multi-me
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