Amplifying patient involvemement in translational research

In May, the Charities Research Involvement Group, LifeArc and the TAR Network came together to discuss how we can get more people with lived experience involved in translational research.

This report shares the outcomes of that discussion, including examples of how people with lived experience are shaping research, the challenges in embedding meaningful involvement, and 10 priorities for future action.

Read the full report here

1st December 2025

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