title: Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed.
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Noreen
authors.initials: N
authors.lastname: Hopewell-Kelly
authors.affiliation: School of Healthcare Sciences, College of Biomedical and Life Sciences, Cardiff, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Baillie
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Sivell
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Emily
authors.initials: E
authors.lastname: Harrop
authors.affiliation: Community Palliative Care Services Team, Ty Hafan, Vale of Glamorgan, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Bowyer
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Sophia
authors.initials: S
authors.lastname: Taylor
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Kristen
authors.initials: K
authors.lastname: Thomas
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Alisha
authors.initials: A
authors.lastname: Newman
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Hayley
authors.initials: H
authors.lastname: Prout
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: Byrne
authors.affiliation: Palliative Care Department, Velindre Cancer Centre, Cardiff, UK.
authors.forename: Mark
authors.initials: M
authors.lastname: Taubert
authors.affiliation: Marie Curie Palliative Care Research Centre, Institute of Cancer and Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Annmarie
authors.initials: A
authors.lastname: Nelson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D035843:Biomedical Research / Q000941:ethics* / Q000592:standards*; D005260:Female; D017408:Guidelines as Topic; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000941:ethics* / Q000592:standards*; D012107:Research Design; D061108:Social Media / Q000941:ethics* / Q000592:standards*
keywords: Palliative care; Research ethics; Social Media
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