Welcome to the Shared Learning Group on Involvement and Charities Research Involvement Group
We aim to enable shared learning about the involvement of people with lived experience between charities working in the UK. Our main Shared Learning Group looks at involvement across all areas. We also have a Charities Research Involvement Group.
Latest Meeting Summaries
Shared Learning Group on Involvement
Another really useful meeting.
Our main topic was involvement in recruitment. Thanks to colleagues from the Royal Society for Blind Children and Barnardo’s for sharing their experience.
We also heard from colleagues at the Nursing and Midwifery Council about a stakeholder round table, held to inform thinking about a new organisational strategy.
Charities Research Involvement Group
Our main topic for discussion was how we can reach out to people from different socio-economic groups, different geographical areas, and people who may find online involvement difficult/impossible. Thanks to Natasha Ratcliffe (freelance consultant) and Elspeth Mathie from the University of Hertfordshire for sharing their experience.
We also had a great presentation from colleagues at Health Research Charities Ireland and University College Dublin about PPI in lab-based research.
Plus as usual some fab discussion and info sharing.
News & Featured Documents
In June 2022 the Shared Learning Group on Involvement talked about how to support people with lived experience to stop their involvement. Thanks to colleagues from Turn2us and Mind and to Derek Stewart, a patient advocate, for sharing their experience and prompting really useful discussions amongst members. This paper summarises our discussions. Shared practice – stopping involvement – FINAL-public
25th August 2022
Talking about involvement in research
We’re committed to increasing the diversity of people whow get involved in research. But many of us find it difficult to explain what involvement in research is, especially to people who might be new to research as well as to involvement. So we’ve worked with Egality community connectors and staff to share our experience of talking about involvement in research to different communities of people. This short guide summarises our learning. Talking about involvement in research – FINAL-public
31st May 2022
Improving diversity in health research and trials
29th March 2021
Guidance on PPI in lab based research
New, practical guidance put together by Alzheimer’s Society, Parkinson’s UK and NIHR Biomedical Research Centre at University College London Hospitals NHS Foundation Trust on PPI in lab based research – developed in partnership with patients, carers and lab based researchers. Link is here.
7th December 2020
How does involvement in research add value for charities?
There’s growing evidence that involvement adds value to research. But does it add value for the charities that fund and/or support research? Here’s our report. Note to members – there’s a more detailed version of this report in the Resource Centre. Involvement adds value FINAL REPORT PUBLIC VERSION
16th September 2020
Toolkit for research charities starting a PPI relationship
How do we begin the conversation about research involvement with patients and the public? This new PPI Toolkit, published by our member organisation Health Research Charities Ireland, helps health research charities and others starting on the journey to tackle this challenge. It offers particular guidance on facilitating a first workshop with PPI contributors.
3rd July 2020
Involving people when you can’t involve them face-to-face
During this pandemic, it’s more important than ever to listen to the voices of people we seek to support.
Most charities have little experience of involving people virtually on a regular or large scale basis – until the last few weeks, much of their involvement activity has been face-to-face, because this is what many people prefer. We all need to move fast to respond to the changing situation. So members to share their experience to date and to come up with some tips and ideas. The write-up of our discussion is here: Online involvement-public
15th April 2020
Running a big interactive meeting using Zoom
The most recent meeting of the Charities Research Involvement Group took place via Zoom. Here are our notes on how we planned for and ran this meeting – hope these will be useful for anyone who is planning a big interactive virtual meeting for the 1st (or 2nd or 3rd) time: CRIG zoom meeting
20th March 2020