Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members
Allbwn ymchwil: Cyfraniad at gyfnodolyn › Erthygl › adolygiad gan gymheiriaid
StandardStandard
Yn: Health Expectations, Cyfrol 22, Rhif 4, 08.2019, t. 824-835.
Allbwn ymchwil: Cyfraniad at gyfnodolyn › Erthygl › adolygiad gan gymheiriaid
HarvardHarvard
APA
CBE
MLA
VancouverVancouver
Author
RIS
TY - JOUR
T1 - Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members
AU - Noyes, Jane
AU - McLaughlin, Leah
AU - Morgan, Karen
AU - Roberts, Abigail
AU - Stephens, Michael
AU - Bourne, Janette
AU - Houlston, Michael
AU - Houlston, Jessica
AU - Thomas, Sarah
AU - Rhys, Revd Gethin
AU - Moss, Bethan
AU - Duncalf, Sue
AU - Lee, Dawn
AU - Curtis, Rebecca
AU - Madden, Susanna
AU - Walton, Phillip
N1 - © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.
PY - 2019/8
Y1 - 2019/8
N2 - BackgroundCo‐production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co‐production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation.ObjectiveTo address these challenges, we designed the first large co‐productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co‐productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges.DesignTwo‐year co‐produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies.Setting and participantsNHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co‐productive partners with the research team.ResultsCo‐productive strategies enabled a smooth passage through four different ethics processes within the 10‐week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area.Discussion and conclusionAlthough expensive and time consuming, co‐production was effective and added value to research processes and study outcomes.
AB - BackgroundCo‐production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co‐production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation.ObjectiveTo address these challenges, we designed the first large co‐productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co‐productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges.DesignTwo‐year co‐produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies.Setting and participantsNHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co‐productive partners with the research team.ResultsCo‐productive strategies enabled a smooth passage through four different ethics processes within the 10‐week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area.Discussion and conclusionAlthough expensive and time consuming, co‐production was effective and added value to research processes and study outcomes.
U2 - 10.1111/hex.12894
DO - 10.1111/hex.12894
M3 - Article
C2 - 31058410
VL - 22
SP - 824
EP - 835
JO - Health Expectations
JF - Health Expectations
SN - 1369-6513
IS - 4
ER -