Hanging with the ‘The Chronics’ Online: Autopathography and Narrative Associations in an Online Support Group for Chronic Lymphocytic Leukemia

Abstract

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-media platforms online. The paper outlines key emerging sites in the current landscape of CLL patients, and considers how they extrapolate to chronic illness experience generally in a digital era. Finally, the work addresses creative ethical approaches to the presentation of complex assemblages of data reflecting the multiplicity of texts and experiences involved in understanding, and living with disease. The work’s emphasis on the ways in which patient-connectedness is replacing patient centredness has been picked up by a significant contributor to the study of medical humanities and cited with attributions in a forthcoming major textbook on the subject, currently in publication. Early findings have contributed to the re-design of the website of a major leukemia support site. Several major support sites globally have expressed interest in the work, and have requested to contribute their perspectives to what will be the largest scale work on CLL of its type to date, and a significant contribution to actor network methodologies and an understanding of disease experience in the digital age