Along with around 30 staff members, Marion Sumerfield and Deb Smith joined us as public representatives to co-present on the following projects which they were involved in throughout the research process.
Photo: foreground Marion Sumerfield and Deb Smith, public members with other researchers from the Cicely Saunders Institute
This project was initiated through our support and learning goal within the Cicely Saunders Public Involvement Strategy.
Around 10 public members co-developed and tested the peer buddy scheme and the research training videos and provided feedback for improvements.
Two public members were involved from the start of the research, designing and planning both the peer buddy scheme and the research training videos. One of these members was also able to co-present at the international conference showing the meaningful involvement of PPI throughout the research process. The development of the buddy scheme was co-presented as an oral presentation by Marion Sumerfield and Sarah Crabtree and they also co-presented a poster on the development of the research training videos.
Photo: CovPall-Partners researchers including public members
This project co-designed resources to support integration and accessibility of palliative care to those that need it most.
A short video and infographic were co-designed to tailor different ethnic groups and subgroups, ensuring the message about managing systems like breathlessness, agitation and comorbidities are culturally acceptable and accessible with our patient and public involvement members and integrated care systems and their local partners.
This project was co-presented with Deb Smith as a poster presentation.
Photo: (From left) Dr Sarah Crabtree, Marion Sumerfield, Dr Lisa Brighton
By attending the conference, it provided an opportunity to meet internationally based clinicians and researchers and understand how palliative care is being researched and provided in other countries.
Public members attending and presenting together with researchers and clinicians, increased awareness and demonstrated a collaborative model of working.
Marion and Deb both appreciated that it was an important and rare chance to attend, and co-present oral and poster presentations at an international conference.
It was an incredible opportunity to attend the EAPC conference this year. There were 1,000 delegates there and all of them were focused on providing better palliative care.
It was an honour to be there, to listen, learn and to talk to some of them and to share the collaborative work that we do at the Cicely Saunders Institute. I was immensely proud to represent the many other PPI members who know how important this work is.
I have realised how truly unique the opportunity to go to the EAPC in Barcelona as a public member was. For me, personally, it helped to get to know people from the CSI much better than I had before… it enabled conversations to occur which I very much hope will enhance the future work we do with the Cicely Saunders Institute.
It also helped me to understand about palliative care across the world and to understand that there are many differences between how patient and public involvement and engagement (PPIE) is done here and how it is done in many other countries and that we are actually ahead of the game here, compared to the other countries.
Both Marion and Deb believed they were the only public members in attendance and could see the value of other PPI members being involved in future conferences.
It is also fair to say that the experience did not come without some challenges alongside a large learning curve. Firstly, additional funding was required for both of our public members to attend. Thankfully there were opportunities through university-based funding schemes to make this happen. Considerations about inviting public members with health conditions or who care for family members had to be made.
However, it was important to us when applying for funding that resources were available to ensure the opportunity was as accessible as possible. It was also important that Marion and Deb were an integral part of the Cicely Saunders Institute (CSI) team. Everyone engaged with delegates who visited our stand and shared how we work at the CSI, this includes our educational, clinical and research work.
Although there can be challenges to enable public members to attend conferences, this is a natural next step in truly working ‘with’ members of the public. Marion and Deb co-presenting reflects the collaborative nature of our work. We value public members’ involvement within the research process as well as at conferences in order to disseminate findings. We look forward to seeing more members of our public involvement community attending future conferences.
If you have any questions or would like to get in touch, please contact us email: csi.ppi@kcl.ac.uk
This blog was written by Dr Sarah Crabtree, Marion Sumerfield, Deb Smith and Dr Mevhibe Hocaoglu.
Read more about the palliative and end of life care research at ARC South London.