Welcome to the Shared Learning Group on Involvement and Charities Research Involvement Group
We aim to encourage shared learning about service user and carer involvement between voluntary sector organisations 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
Some really inspirational talks at this meeting, from leaders of three organisations:
We focused on the topic of user led organisations, and we heard from three amazing and inspirational people: Akiko Hart, CEO of the National Survivor User Network (NSUN); Chrisann Jarrett, co-CEO of We Belong, an organisation led by young people who migrated to the UK, and James Cusack, CEO of Autistica, the UK’s national autism research charity.
Thanks to all of them.
We also had a great talk about running an involvement audit – thank you Breast Cancer Now.
Some great questions were raised by members and lots of other interesting info was shared in response. Our next topic will be measuring and demonstrating impact in a meaningful way – should be an interesting meeting….
Charities Research Involvement Group
Great discussions about PPI at NICE at this meeting – thanks to Mark Rasburn from NICE for joining us.
Last year a start-up called Egality ran a series of focus groups with CRIG members to assess the current relationship between health research supported by member charities and BAME communities. We had a preview of their report, which we’ll be sharing soon. We’re also setting up a working group to progress this issue.
News & Featured Documents
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
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
A form and guidance to use to ask the right questions of researchers who want to involve people
Members of the Charities Research Involvement Group are often approached by researchers who want to find PPI contributors to actively involve in their work. Many of our members ask researchers to complete an application form to help them to decide whether to share this request with their networks, and if so what information to share. We have produced this guidance to help our members to produce or improve such a form. We’re making it more widely available so that other charities can use it if they wish. View the guidance here: Template and guidance for researchers-public
11th December 2019
Supporting involvement in industry-led research: new guidance
This guidance has been developed by the Charities Research Involvement Group in collaboration with the Health Research Charities Ireland. It’s to help charities in the UK and the Republic of Ireland to promote and support involvement in industry-led research. Supporting PPI in industry-led research
25th September 2019
