Results of a transparent expert consultation on patient and public involvement in palliative care research.
BACKGROUND
Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking.


OBJECTIVE
To determine an optimal user-involvement model for palliative care research.


METHODS
We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings.


METHODS
Participants involved in palliative care research were invited to a global research institute, UK.


RESULTS
A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility.


CONCLUSIONS
For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research.
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK barbara.daveson@kcl.ac.uk.
Barbara A
BA
Daveson
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK.
Susanne
S
de Wolf-Linder
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK.
Jana
J
Witt
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK Psychosocial Oncology and Consumer Liaison Groups, UK.
Kirstie
K
Newson
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK.
Carolyn
C
Morris
Department of Palliative Care, Policy & Rehabilitation; Cicely Saunders Institute; King's College London, London, UK.
Irene J
IJ
Higginson
Catherine J
CJ
Evans
D017028:Caregivers; D055812:Community-Based Participatory Research / Q000379:methods / Q000458:organization & administration*; D017144:Focus Groups; D006302:Health Services Research / Q000379:methods / Q000458:organization & administration* / Q000592:standards; D006801:Humans; D017146:Models, Organizational; D010166:Palliative Care / Q000379:methods* / Q000592:standards; D010358:Patient Participation / Q000379:methods*; D006113:United Kingdom
Consumer participation; consumer-based participatory research; group processes; hospice care; palliative care; research design