Innovative patient and public involvement developments in palliative care research

Author: Dr Barbara Daveson, Cicely Saunders International Lecturer in Health Services Research in Palliative Care and Kirstie Newson, service-user & advocate

18 June 2014

 

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  One-day workshop: Identifying priorities to develop a PPI model for palliative care at the Cicely Saunders Institute, London, April 2014

One-day workshop: Identifying priorities to develop a PPI model for palliative care at the Cicely Saunders Institute, London, April 2014

Across ehospice today, we are looking at innovation in palliative care. Here, Dr Barbara Daveson, a Cicely Saunders International Lecturer and Kirstie Newson, a service-user advocate, write about innovative developments in patient and public involvement.

"Patient and public involvement in palliative care research at the CSI will play an important role in educating the public, demystifying perceptions of palliative care, and ultimately in improving the research impact."

Around the world there is a growing recognition of the value of involving service-users (for example, patients and their unpaid caregivers) and members of the public in research. However, it is not always clear how best to do this and whether or not the views and values of the patients, the public and researchers match up when it comes to working together to do this. 
A recent workshop and study led by the Cicely Saunders Institute has been conducted to examine this – to work out how best to deliver patient and public involvement in palliative care research.
The results of this workshop, which aimed to identify priorities to develop a patient and public involvement model for palliative care, were presented at the international BuildCARE conference held at King’s College London’s Cicely Saunders Institute (CSI) to approximately 100 delegates on Wednesday 7 May 2014. 
The presentation was provided by Kirstie Newson (a service-user advocate) and Dr Barbara Daveson (Cicely Saunders International Lecturer in Health Services Research) on behalf of a team of service-user advocates and researchers who collaborated to deliver the project. The team included Susanne de Wolf, Dr Jana Witt, Carolyn Morris, Dr Catherine Evans and Professor Irene Higginson. 
The findings from the project were informed by a consensus-building strategy called the nominal group technique. This technique, which was used in a workshop, helped provide structure to the process of generating content and identifying the participant’s priorities related to three important questions:

• How can patients, families and the public contribute to research in order to improve its quality and relevance?
• How might patient, family and public involvement work best at the CSI?
• How can researchers and patients, families and the public benefit from patient/family and public involvement?

The nominal group technique has been used before in palliative care research, for example in the MoreCARE project, which has led to recommendations for how to complete quality palliative care research.

In essence, the patient and public involvement participants in the workshop indicated that they would like opportunities to be involved in the complete research continuum (from study design to publication, implementation and dissemination). They also wanted a wide variety of ways to get engaged, flexibility in engagement, and for there to be different levels of engagement available to them. 

The researchers agreed that a flexible model was most likely to result in improved public engagement with wider and more diverse involvement that would ultimately improve the quality, efficiency and relevance of the research being undertaken. The findings of the work are currently being written up for publication.
The CSI aims to improve the care for patients and families through cutting-edge research and the Institute’s Director, Professor Irene Higginson, believes that input from patients and the public helps to keep the research focused on what matters most. 
As with all areas of heath care, there are numerous challenges associated with involving palliative care patients, their families and carers in research. However, in order to future proof palliative care and rehabilitation, the public needs effective understanding through better communication about sensitive and sometimes emotive subjects. 
Patient and public involvement in palliative care research at the CSI will play an important role in educating the public, demystifying perceptions of palliative care, and ultimately in improving the research impact.


Are you a patient, or an unpaid caregiver or a member of the public and want to become involved in this work? Please contact Susanne de Wolf or Jana Witt to discuss how to do this.