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Newly redesigned Public Involvement Forum unveiled

The redesigned Cicely Saunders Institute (CSI) Public Involvement Forum for palliative care and rehabilitation research was launched last month.

CRN South London awarded a grant of over £2,500 to the redesign and development of the forum earlier this year. The forum aims to enable those with an experience of, or an interest in, palliative care and rehabilitation research to work together with CSI researchers on the design and delivery of studies.

Patient and Public Involvement Co-Ordinator Halle Johnson hopes the platform will empower people to engage in the research process. She said:

“Everyone is really pleased with the new design of the forum. We’ve added more colours and images and tried to make the platform really user-friendly, inviting and engaging for our users. We want people to ask questions, post their ideas about our research and have a conversation with us about the direction and shape of our work.

“My message to people is to interact with the forum. Your experience is invaluable and by working with us you can help to create research that translates into better patient and public care for future generations.

“We wouldn’t have been able to make the online forum as accessible or engaging without the support of CRN South London and hope the network will continue to work with us in helping to increase the reach of the forum. Patient and Public Involvement and Engagement Lead Robert Pleass has been an invaluable source of information and guidance throughout this process.”

The forum was set up in 2016 and has 90 registered users. You can register through an online form, which is reviewed by moderators to ensure accounts are genuine, before being approved. Once registered, users have access to all discussion threads, they can contribute through posts and start their own discussions.

A public workshop was held before the launch to agree to the final design of the platform, based on the findings of their initial evaluation work. Halle said members who attended are really “excited” about working together to help open up the platform to a wider audience.

Robert said: “I am delighted to have been involved in this project and see the online forum develop into such an informative and supportive area of palliative care and rehabilitation research. It was also a real pleasure to meet forum members before the official launch.

“The forum is a great tool for giving patients, their families and members of the public a real say in the design and delivery of studies.”

(L to R) Robert Pleass, Patient and Public Involvement and Engagement Manager, CRN South London; Marion Sumerfield, Carer Representative; Sarah Markham, Patient and Carer Representative; Lisa Brighton, PhD student, Cicely Saunders Institute; Rashmi Kumar, Carer Representative.