Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper
Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper
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.
Adult, Aged, Aged, 80 and over, Biomedical Research/ethics, Female, Guidelines as Topic, Humans, Male, Middle Aged, Palliative Care/ethics, Research Design, Social Media/ethics
219-224
Hopewell-Kelly, Noreen
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Baillie, Jessica
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Sivell, Stephanie
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Harrop, Emily
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Bowyer, Anna
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Taylor, Sophia
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Thomas, Kristen
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Newman, Alisha
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Prout, Hayley
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Byrne, Anthony
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Taubert, Mark
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Nelson, Annmarie
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June 2019
Hopewell-Kelly, Noreen
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Baillie, Jessica
0be256d0-1e31-40e3-8932-3881fef35bcc
Sivell, Stephanie
9b23abf0-d4a5-4afb-9e1b-c209b2b6a264
Harrop, Emily
01114a0a-f1c8-4d71-aaff-c50365561ddd
Bowyer, Anna
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Taylor, Sophia
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Thomas, Kristen
6cb42bbe-bad9-4eb4-ac23-c7731344d3bb
Newman, Alisha
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Prout, Hayley
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Byrne, Anthony
51703870-d7ee-4e08-962d-11a44b0dcbce
Taubert, Mark
99a953eb-b339-4cf3-99cd-9130612e4d6b
Nelson, Annmarie
9be17968-fda0-4bd8-94cd-96d772f5083c
Hopewell-Kelly, Noreen, Baillie, Jessica, Sivell, Stephanie, Harrop, Emily, Bowyer, Anna, Taylor, Sophia, Thomas, Kristen, Newman, Alisha, Prout, Hayley, Byrne, Anthony, Taubert, Mark and Nelson, Annmarie
(2019)
Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper.
BMJ Supportive & Palliative Care, 9 (2), .
(doi:10.1136/bmjspcare-2015-000889).
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.
Text
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More information
Accepted/In Press date: 16 December 2015
e-pub ahead of print date: 28 January 2016
Published date: June 2019
Additional Information:
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Keywords:
Adult, Aged, Aged, 80 and over, Biomedical Research/ethics, Female, Guidelines as Topic, Humans, Male, Middle Aged, Palliative Care/ethics, Research Design, Social Media/ethics
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Local EPrints ID: 475922
URI: http://eprints.soton.ac.uk/id/eprint/475922
ISSN: 2045-435X
PURE UUID: b463dd9c-d3c5-4ea6-b21d-d11c9ceb4699
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Date deposited: 31 Mar 2023 16:32
Last modified: 17 Mar 2024 03:33
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Contributors
Author:
Noreen Hopewell-Kelly
Author:
Jessica Baillie
Author:
Stephanie Sivell
Author:
Emily Harrop
Author:
Anna Bowyer
Author:
Kristen Thomas
Author:
Alisha Newman
Author:
Hayley Prout
Author:
Anthony Byrne
Author:
Mark Taubert
Author:
Annmarie Nelson
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