Putting it into Practice

Title: Results of a transparent expert consultation on patient and public involvement in palliative care research
Author: Daveson, B., de Wolf-Linder, S., Witt, J., Newson, K., Morris, C., Higginson, I. & Evans, C. on behalf of BuildCARE
Date Published: 2015
Reference: Palliative Medicine doi:10.1177/ 0269216315584875 [Epub ahead of print]
Are service users or carers authors: Yes

Abstract: Aim: To determine an optimum model for involving service users in palliative care research. Method: A consultation workshop with service user and researcher participants. Findings/ recommendations: The users in the workshop wanted to their involvement to be more visible, to disseminate information about the difference their involvement made to projects. The researchers wanted involvement to increase productivity and the relevance and quality of their research. It was agreed that better involvement would be achieved by: being clearer about palliative care to help demystify it for service users and help them disseminate the findings to a broad audience; involving people as early as possible, even before the start of a project, to maximise the impact; nvolving service users at all stages of a project; using a range of methods and adopting a flexible approach to involvement to allow for changes in service users’ health and carers’ responsibilities; involving different users at different stages of the research project, again to allow for changes in people’s health and priorities.

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Categories: journal article
service users and carers
researchers
research commissioners
people at the end of life
general principles of good practice
guidance/guidelines

Date Entered: 2015/07/30

Date Edited: 2015/07/30

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