Resource was added by: Bec Hanley
This guide is about turning the ideas of equality, diversity, and inclusion (EDI) into practical action. Published by health Research Charities Ireland (a CRIG member organisation), the aim is to move beyond theory and show what you can actually do to make involvement in research more welcoming and enjoyable for everyone.
Inclusion by design: How to address structural and cultural barriers to PPIE in academic research
Resource was added by: Bec Hanley
This report was produced by Genetic Alliance UK, in collaboration with Rare Disease Research UK and the LifeArc Translational Centres for Rare Disease. The report explores why patient and public involvement and engagement (PPIE) remains difficult to deliver meaningfully in academic research and draws on insights from researchers at different career stages to set out eight practical recommendations for systems-level change. While grounded in rare disease research, the findings are relevant across biomedical and healthcare research, combining longer-term priorities with practical ‘quick wins’ to help embed more inclusive research practices.
Building safe and trustworthy processes to address fraudulent involvement
Resource was added by: Bec Hanley
Almost everyone who gets involved in research will have the lived experience that Shared Learning Group and Charities Research Involvement Group members are seeking. But in a very
small number of cases, this is not the case. The aim of this guidance is to help CRIG
SLG members to build and manage a robust involvement process by preventing and
addressing involvement which may be deemed to be ineligible or fraudulent.
Thanks to the CRIG members and their colleagues who put this guide together - Anna Goodman, Julia Clark, Ben Willis, Lesley Booth, Gillian McCarthy and Priyanka Punja
Amplifying patient involvement in translational research
Resource was added by: Bec Hanley
This is a report of an event organised by the Charities Research Involvement Group, LifeArc and the Translating and Accelerating Research Network (TAR) on 22nd May 2025. The event, entitled Amplifying patient involvement in translational research, was attended by people with lived experience, members of CRIG and TAR and their colleagues.
This report includes examples of invovlent in translational research.
Exploring Imposter or Fraudulent Participants in Qualitative Research and PPI
Resource was added by: Bec Hanley
Slides from a webinar organised by the NIHR Research Support Service
Co-production in research in UK higher education – report
Resource was added by: Bec Hanley
Interesting report by the Co-production Futures Inquiry which is exploring the barriers to co-produced and participatory research within UK higher education, and how these might be addressed.
Involving minoritised communities in research
Resource was added by: Bec Hanley
Here's a recording of a webinar led by Diabetes UK, where they talk about thir experience of involving different minoritised communities in research supported by the charity.
Involvement in research funding – a brief survey of CRIG members
Resource was added by: Ben Morrison
As part of a project at Breast Cancer Now, we wanted to gather some insights into if and how other funders are incorporating involvement into their research funding activities.
We did this by creating a brief survey covering (among other things):
- If people with lived experience (PLE) are involved in research funding activities
- How PLE are involved
- How PLE are recruited and trained/guided/supported
- How grant applicants are trained/guided/supported
- Payment policies
- Impact evaluation
- Challenges
22 CRIG members, who fund research, were kind enough to complete the survey and agreed for their responses to be shared with the network. Attached is a spreadsheet containing the survey questions and responses received.
Paper on involvement in the development of a research strategy for Dementia UK
Resource was added by: Bec Hanley
What is this resource?
A paper on the processes used to involve stakeholders in the development of a research strategy for Dementia UK.
Who was it developed by?
Dementia UK
When might it be useful?
If you're thinking about involvement in the development of a research strategy or research priorities.
Inclusion a condition for NIHR funding
Resource was added by: Bec Hanley
What is this resource?
This is the announcement from the NIHR giving info about how inclusion is now a key requirement for NIHR funding.
Who was it developed by?
NIHR
When might it be useful?
If you are looking to persuade senior leaders or researchers about the impotance of considering diversity in research.