Background Patient and public involvement (PPI) is an established component of high quality palliative care research. The way patients and public are involved in research differs between and across research studies, however the range of contributions and different models of working are not well documented in palliative care.
Aim The aim is to document the range and scope of activities of a service user advisory panel – the Palliative Care Studies Advisory Group (PCSAG), established at The University of Sheffield in 2009.
Methods A narrative summary of PPI activities, documenting the range and scope of contributions to research over the nine years since the PCSAG was established.
Results Since they were established the group have contributed to 34 research projects and funding applications in the area of palliative and end of life care. These have ranged from substantial multi-million pound international research studies to PhD studies and student projects. In the main, researchers attended facilitated group discussions to request advice on aspects of their research projects, however, other models of working have emerged in more recent years. These include group members sitting on project steering committees as co-applicants, contributing to data analysis and presenting at conferences, and developing on-line methods of providing PPI input.
Discussion The Palliative Care Studies Advisory Group have made a substantial contribution to palliative and end of life care research. The scope and depth of PPI involvement has increased over the years, as researchers and service users have gained confidence in working together. Models of co-working which involve service users as co-applicants have more recently become commonplace as the PPI movement has become more embedded in research. However, little guidance is available to support researchers working with service users in palliative and end of life care, and further research could address this gap.
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