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.
Become a Member
Most of the resources on this website are password protected and accessible to members only. For more information about membership please visit How to join.
How to JoinLatest Meeting Summaries
Shared Learning Group on Involvement
Our main topic for discussion was ‘breadth or depth’ – whether we aim to involve a lot of people with lived experience, but accept that because of the time this takes, the involvement may be at a consultation level, or we involve a few people at a more collaborative level.
Thanks to Anna Moore for sharing her experience of leading an evaluation and feedback session at Bliss.
We heard about the results of our benchmarking exercise – lots of useful info for comparison and learning.
Charities Research Involvement Group
In a meeting packed full of useful info, we heard from colleagues at Alzheimer’s Research UK and LifeArc about the importance of having a strategy for involvement in research, and we looked at policies and processes to help involvement in research to work well.
We also heard from colleagues in Ireland (Health Research Charities Ireland and PPI Ignite) about a template to help to set expectations of agreement between charities and potential partners, and from British Heart Foundation and Versus Arthritis about work to understand what researchers need to help them to involve people with lived experience.
News & Featured Documents
Centring lived experience – a strategic approach for leaders
New guidance published by NPC, with input from some of our member organisations.
NPC-Centring-Lived-Experience-strategic-approach-leaders.pdf
14th December 2023
Do you work for a community, grass roots or user led organisation?
We want to increase the diversity of our membership, so we are offering membership for £50 per year for user led organisations and organisations that are working at a community/grassroots level, as a pilot.
To be eligible for this reduced price memebrship, organisations need to:
- Have an annual income of less than £1,000,000
- Work entirely at a grass roots/community level, and/or be a service user led organisation
- Employ someone who has a role to meaningfully involve people with lived experience in the work of the organisation. This might be their full time job, or it might be part of another role, e.g. volunteer coordinator or policy officer
See our ‘how to join’ page for more info on what membership offers.
14th December 2023
Stopping involvement
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
Report by Egality of a series of focus group discussion with members about the challenges of involving a range of people in research. 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
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
