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Opening the doors a crack wider: palliative care research data in the public domain.

Lindqvist, Olav; Rasmussen, Birgit LU ; Fürst, Carl Johan LU and Tishelman, Carol (2016) In BMJ Supportive & Palliative Care 6(1). p.113-115
Abstract
This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous... (More)
This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMJ Supportive & Palliative Care
volume
6
issue
1
pages
113 - 115
publisher
BMJ Publishing Group
external identifiers
  • pmid:26781808
  • scopus:84958779302
  • wos:000371323400023
ISSN
2045-4368
DOI
10.1136/bmjspcare-2015-000959
language
English
LU publication?
yes
id
87298f2e-61e8-443e-ac3f-501448f54fa7 (old id 8577094)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/26781808?dopt=Abstract
date added to LUP
2016-02-03 18:18:55
date last changed
2017-01-01 07:35:26
@article{87298f2e-61e8-443e-ac3f-501448f54fa7,
  abstract     = {This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.},
  author       = {Lindqvist, Olav and Rasmussen, Birgit and Fürst, Carl Johan and Tishelman, Carol},
  issn         = {2045-4368},
  language     = {eng},
  month        = {01},
  number       = {1},
  pages        = {113--115},
  publisher    = {BMJ Publishing Group},
  series       = {BMJ Supportive & Palliative Care},
  title        = {Opening the doors a crack wider: palliative care research data in the public domain.},
  url          = {http://dx.doi.org/10.1136/bmjspcare-2015-000959},
  volume       = {6},
  year         = {2016},
}