Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper

BMJ Supportive & Palliative Care
Noreen Hopewell-KellyAnnmarie Nelson

Abstract

Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of 'data' which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this 'data' comes with specific ethical dilemmas. This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. These are the themes that this paper will ...Continue Reading

References

Nov 10, 2001·BMJ : British Medical Journal·G Eysenbach, J E Till
Jan 17, 2004·Qualitative Health Research·Sarah FlickerHarvey Skinner
Jan 2, 2008·Pediatrics·Megan A MorenoDimitri A Christakis
Aug 21, 2013·British Journal of Hospital Medicine
Mar 20, 2014·BMJ Supportive & Palliative Care·Mark TaubertLukas Radbruch
Oct 15, 2014·BMJ Supportive & Palliative Care·Carolina Casañas i Comabella, Marta Wanat
Jun 3, 2016·Clinical Medicine : Journal of the Royal College of Physicians of London·Nick Cork, Paul Grant

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