24 Nov 2020

Researchers from the Cicely Saunders Institute (CSI) lead ARC South London’s palliative and end of life care research. Their public involvement activities were underpinned by the Institute’s first Public Involvement Strategy for the period of 2017 to 2020. Now the strategy is due to be renewed they took this opportunity to co-produce a new strategy.

On Wednesday 18 November 2020, 38 of the Institute’s researchers and public members came together for a virtual workshop to inform the Public Involvement Strategy for the period of 2021 to 2024. Reflecting on their co-produced ambition and principles and draft goals proposed by the Public Involvement strategy development group, attendees discussed how these could be collectively delivered through specific actions. These included creative outreach to seldom heard communities, developing a ‘buddy’ system, co-producing training opportunities (including public members teaching researchers), and sharing resources to support wider public involvement in palliative care and rehabilitation.  

Palliative care strategy workshop

Margaret Ogden, a patient and public involvement (PPI) member who took part in the workshop says: “One of the issues raised from our evaluation of the PPI strategy is the historic nature of PPI for example, a carer whose responsibilities stemmed from some time ago but changed over time. This was the reason that I felt the strategy needed to be updated.

This was my first experience of facilitation by virtual means. The thought was intimidating at first but we had several pre-workshop meetings including one with detailed planning of the day including the format of breakout session which I believe paid off. The workshop ran smoothly, we obtained valuable outputs and insights and they will contribute greatly to the final strategy.

However, I did learn about the challenges of note-taking and feedback. It was a positive experience overall and I’d be happy to facilitate again in the future

Margaret Ogden, patient and public involvement representative

Margaret Ogden, PPI member

Rashmi  Kumar, a PPI member who took part in the workshop says: "The opportunity to participate in the recent PPI workshop at the Cicely Saunders Institute (CSI) was very wonderful - both in the style and time offered to everyone at the workshop, giving us all (PPI members and researchers) the opportunity to share our experiences and how some challenges could be mitigated. On my part, it was really very helpful and useful to hear from others on what challenges they were experiencing and how these could potentially be addressed to improve PPI activities at the CSI."

Findings from the workshop will inform innovations in public involvement at the Cicely Saunders Institute, and within the Palliative and End of Life Care theme of the NIHR ARC South London. The new strategy will be launched in early 2021.