Involving service-users in palliative and end of life care research
29th September 2015
Researchers from the Cicely Saunders Institute working on the BuildCARE programme have had a paper published in the journal Palliative Medicine which explores service-user involvement in palliative care research. Involving service-users is considered vital in shaping the quality and relevance of research, but evidence on how best to deliver service-user involvement in palliative care research has been minimal.
Results of a transparent expert consultation on patient and public involvement in palliative care research explores four core components identified as essential to service-user involvement in palliative care research. These include: i) researchers needing to promote the contribution of service-users and promote the value of their contributions; ii) flexible methods of involvement to enable people to become involved and remain involved in the research over time; iii) service-users being involved from as early as possible in the research project; and, iv) service-users being encouraged to add value to research by aiding the improvement of quality, productivity and relevance within the project.
Concluding these four components came from the research team co-facilitating a workshop with patient advocates Kirstie Newson and Carolyn Morris in April 2014. During this workshop participants (both researchers and service-users) were asked to identify their priorities which were then shared amongst the group and then carefully analysed statistically and qualitatively through the use of content analysis.
Dr Barbara Daveson, Cicely Saunders International Lecturer in Health Services Research in Palliative Care and lead author of the paper, commented on the significance the paper has had on the Cicely Saunders Institute. “Due to the success of the project, our new model is being trialled across a number of research projects and patient groups.”
Patient, family and Public Involvement (PPI) member, Helen Findlay has been collaborating with the Institute on many different research projects and shared her views on the current PPI model used at the Institute.
“Researchers at the Cicely Saunders Institute have been great in seeking out and inviting people like myself to take part and play a role in their PPI workshops and meetings and via email. These events not only discussed research proposals in palliative care but also enabled service users and researchers from CSI to talk through and formulate in an inclusive way the kinds of involvement that people wanted to have in research.
“By being responsive and really listening to what people said about their involvement, CSI has engendered the feeling that your views and contributions as a service user matter and that they can have a real impact right from the start on the focus and framework of a research project and add to its relevance. As well as face-to-face meetings, CSI is considering other approaches to enable service users to be involved including the use of digital communications through the development of webinars for instance and also a special website.
“In my view, service users working as co-producers with researchers in the way that CSI describes can only add to the quality of palliative care research methods and findings in the future.”
The Cicely Saunders Institute continues to host regular patient, family and public involvement (PPI) workshops. If you are interested in more information about service-user involvement within palliative care research and how to become involved, you can email the team at csi.ppi@kcl.ac.uk