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

Hopewell-Kelly, Noreen, Baillie, Jessica ORCID:, Sivell, Stephanie ORCID:, Harrop, Emily ORCID:, Bowyer, Anna, Taylor, Sophia ORCID:, Thomas, Kristen, Newman, Alisha ORCID:, Prout, Hayley Christine ORCID:, Byrne, Anthony, Taubert, Mark ORCID: and Nelson, Annmarie ORCID: 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) , pp. 219-224. 10.1136/bmjspcare-2015-000889

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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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Healthcare Sciences
Subjects: R Medicine > R Medicine (General)
Additional Information: This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license
Publisher: BMJ
ISSN: 2045-435X
Date of First Compliant Deposit: 30 March 2016
Date of Acceptance: 16 December 2015
Last Modified: 09 Nov 2023 02:12

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