ePatients: The Medical, Ethical and Legal Repercussions of Blogging and Micro-Blogging Experiences of Illness and Disease – Call for Papers and Conference Details

Queen’s University Belfast, 11-12 September 2015 Call for Papers

Referring to the growth of online patient-initiated resources, including medical blogs, the BMJ noted in a 2004 editorial that we were witnessing ‘the most important technocultural medical revolution of the past century’. Ten years later, the controversy caused by Bill Keller’s opinion piece in the New York Times (‘Heroic Measures’, January 2014) and a blogpost on the Guardian US website criticising Lisa Bonchek Adams’s decision to tweet her experience of breast cancer, remind us of the ongoing sensitivities surrounding online patient narratives and the complex relationship between the world of medicine and social media. Emma Keller, the freelance journalist (and wife of Bill Keller) who questioned Adams’s use of twitter to discuss terminal illness, wrote the following: ‘Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies? Why am I so obsessed?’ Adams, in emails to the Guardian, said that the column was ‘callous’ in its treatment of her and noted that the blogpost was riddled with inaccuracies and quoted a private direct message without permission.

As debates on the ethics, dynamics and even legal repercussions of online patient narratives become more prevalent, an international, interdisciplinary conference at Queen’s University Belfast, hosted by the Health Humanities Project Research Group at the Institute for Collaborative Research in the Humanities, will focus on how those with life-threatening or incurable illness use social media, as well as the medical, ethical and potential legal consequences of online accounts of pain, suffering and the clinical experience. We welcome paper proposals dealing with ePatient accounts from a variety of countries and cultures which address the following questions:

  •   What does the rise in social media (“web 2.0”) participation by patients tell us about the ways in which the growing influence of e-patients is challenging the power structures of traditional healthcare and, as a result, proving contentious?
  •   In what ways might social media narratives of illness be seen as a useful source of information for medics? What, conversely, are their limitations?
  •   How do patients influence their online followers, and vice-versa?
  •   What are the ethical issues involved in documenting ‘the public deathbed’?
  •   What are the potential legal consequences of publicly chronicling the clinical experience?

250-word proposals for 20-minute papers (or three-paper panels), in English, should be sent to Dr Steven Wilson by email attachment at the following address: steven.wilson@qub.ac.uk. The deadline for receipt of proposals is Friday 3 April 2015.