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Service-user involvement in palliative care: What's needed?

Service-user involvement is considered fundamental to ensuring the quality and relevance of research. But, consensus on how best to deliver service-user involvement in palliative care research is lacking. New research from the Cicely Saunders Institute, published in Palliative Medicine, will help address this gap. The research has identified four core components essential for patient and public involvement in palliative care research. It is entitled Results of a transparent expert consultation on patient and public involvement in palliative care research

The research team, led by Dr Barbara Daveson a Lecturer in Health Services Research at King’s College London, used the MORECare Transparent Expert Consultation approach to identify these essential components. The MORECare method helped them to identify individual priorities, generate recommendations and form consensus on priorities for service-user involvement in palliative care. The team did this by bringing together patients, carers, members of the public and researchers in a workshop hosted by the CSI and co-facilitated by patient advocates in April 2014. The workshop was co-facilitated by Susanne de Wolf Linder, Dr Jana Witt, Kirstie Newson and Carolyn Morris. 

During the workshop, priorities in palliative care research for service-user involvement were explored and compared to identify what is important for both groups and to develop a model of how best to involve patients, carers (e.g. family) and members of the public in this kind of work. The data from the discussions were analysed statistically and qualitatively. Outcomes of both types of analysis are presented in the article in Palliative Medicine.

 

The project formed part of BuildCARE and the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC), Palliative and End of Life Care Theme. As well as accessing this publication online, you can download the latest PPI workshop summary. Our next workshop is currently being planned for July 2015, for more information about PPI in palliative care research and how to become involved, please email csi.ppi@kcl.ac.uk.