Designing a co‐productive study to overcome known methodological challenges in organ donation research with bereaved family members

Bibliographic Data

ID19508618
AuthorsJane Noyes (0000-0003-4238-5984, School of Social Sciences Bangor University Bangor UK, corresponding author), Leah Mclaughlin (School of Social Sciences Bangor University Bangor UK, corresponding author), Kàren Morgan (0000-0001-6193-1747, Major Health Conditions Policy Team, Directorate of Health Policy, Health and Social Services Group Welsh Government Cardiff UK, corresponding author), Abigail Roberts (0000-0001-7763-136X, NHS Blood and Transplant, North West Regional Office Liverpool UK, corresponding author), Michael Stephens (0000-0002-9735-5881, Department of Nephrology and Transplantation Cardiff and Vale University Health Board, University Hospital of Wales Cardiff UK, corresponding author), Janette Bourne (Wales Director of Services ‐ Cruse Bereavement Care Cymru Caerphilly UK, corresponding author), Michael Houlston (Parents of the Youngest Organ Donor in Wales and Lobbyists for Organ Donation Wales UK, corresponding author), Jessica Houlston (Parents of the Youngest Organ Donor in Wales and Lobbyists for Organ Donation Wales UK, corresponding author), Sarah Thomas (0000-0002-5648-7271, The Centre of sign‐Sight‐Sound Conwy UK, corresponding author), Revd Gethin Rhys (Churches Together in Wales National Assembly Policy Officer Cardiff UK, corresponding author), Bethan Moss (NHS Blood and Transplant, South Wales, South West and South Central Cardiff UK, corresponding author), Sue Duncalf (NHS Blood and Transplant, North West Regional Office Liverpool UK, corresponding author), Dawn Lee (0000-0003-4027-8456, NHS Blood and Transplant, North West Regional Office Liverpool UK, corresponding author), Rebecca Curtis (0000-0003-2538-3936, Statistics and Clinical Studies NHS Blood and Transplant Stoke Gifford UK, corresponding author), Susanna Madden (Statistics and Clinical Studies NHS Blood and Transplant Stoke Gifford UK, corresponding author), Phillip Walton (NHS Blood and Transplant, South Wales, South West and South Central Cardiff UK, corresponding author)
Year2019
Volume22
Issue4
Pages824-835
Publication date2019-08-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.12894
PMID31058410
OpenAlexW2944593215
LanguageEN
Citations received3
References cited12

BACKGROUND: Co-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. OBJECTIVE: To 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. DESIGN: Two-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 PARTICIPANTS: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. RESULTS: Co-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 CONCLUSION: Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes

Business · Donation · Observational study · Organ donation · Political science · Public relations · Ethics in Clinical Research · Medicine · Mental Health and Patient Involvement · Nursing · Organ Donation and Transplantation · Psychology · Marketing · Transplantation