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 working with senior leaders to promote and support involvement. Thanks to colleagues at Royal Society for Blind Children, Alzheimer’s Research UK and Parkinson’s UK for sharing their experience. We also heard about a report celebrating involved put together by Parkinson’s UK, and about involvement in the general election campaign at Shelter, and the changes this has led to. A really intersting meeting.
Charities Research Involvement Group
Our main discussion topic was ‘keeping people engaged and developing a sense of community’. Thanks to colleagues at Versus Arthritis for sharing their experience. We also heard about agreement Breakthrough T1D is using with researchers who ask for help with involvement and participation. And from Magenta Research about a project to explore how to make research more inclusive of disabled people.
News & Featured Documents
Guidance on fair market value launched
We’ve worked with Cancer52, Health Research Charities Ireland, National Rheumatoid Arthritis Society and the Patient Information Forum to develop a guide for charities on whether, how and how much to charge organisations that we work with. The guidance, Fair Market Value (FMV) for Charities in Partnership Work, can be used when charities decide to work in partnership and charge for their time and expertise.
The guidance is based on an extensive consultation with charities and funders.
Yo can donwload the guidance here: FMV guide FINAL
8th October 2024
Invisible: Film to help charities to involve a more diverse range of people
The Charities Research Involvement Group worked with 7 member charities, 2 community organisations, 8 people with lived experience and Egality to co-produce an awareness raising film.
Our collective aim is to increase the number of people with lived experience from diverse ethnic groups who are actively involved in health research and ultimately improve health treatments and services. This spoken word film focuses on why diversity in PPI and in health research matters for people, families, and communities.
You can watch the film and read more about it on this page.
27th September 2024
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
