Resource was added by: Bec Hanley
This is Centre for Ageing Better's payment policy. Two other documents - a cost calculator and guidance on setting involvement budgets, are also on this page.
Thanks very much to Adele Hunt for sharing these.
Centre for Ageing Better – guidance on estimating involvement costs
Resource was added by: Bec Hanley
Thsi document links with the other 2 Centre for Ageing Better documents on this page.
Centre for Ageing Better – involvement cost calculator and checklist
Resource was added by: Bec Hanley
This document links with the other 2 Centre for Ageing Better documents above.
Offering payment to people who share their lived experience – who does and doesn’t do this, and why
Resource was added by: Bec Hanley
An increasing number of member organisations from the Shared Learning Group on Involvement and the Charities Research Involvement Group offer payment to people with lived experience in return for helping to shape the work of the organisation. Members have developed payment policies to offer clarity about when and why people with lived experience will be offered payment. However, we recognise that there are some grey areas, particularly where people are asked to share their lived experience. These are sometimes referred to as ‘stories’ or ‘case studies’, although we recognise that both are contested terms.
We are all committed to behaving ethically when it comes to asking people to share their lived experience. We do not want to re-traumatise people, and we do not want to coerce (or be seen to coerce) people into sharing their ‘stories’. So the question about whether to offer payment in this context is challenging.
This paper aims to share information about when and why some Payment Working Group members pay (or don’t pay) people to share their lived experience.
We'll aim to update this in the summer of 2026.
Payment Working Group – benchmarking survey
Resource was added by: Bec Hanley
Report of a survey undertaken by the Payment Working Group (which includes members from the SLG and the CRIG) can be found on this page.
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.
Fair market value for charities in partnership work
Resource was added by: Bec Hanley
What is this resource?
This guidance aims to help charities to calculate fair payment for contributions to projects or partnerships.
Who was it developed by?
This initiative was led by the CRIG, along with Cancer52, Health Research Charities Ireland, National Rheumatoid Arthritis Society and the Patient Information Forum and was the result of consultation with CRIG members as well as a range of other charities and partner organisations.
When would it be useful?
The guidance can be used when working with pharma, but also with a range of other potential partner organisations in the private and public sector.
Guidance for recognising ‘ineligible’ involvement
Resource was added by: Bec Hanley
This guidance was produced by Health and Care Research Wales to address the (rare) issue of people claiming payment for an involvement activity that they are not entitled to, because they do not have the relevant lived experience.
Does payment change the dynamics of involvement?
Resource was added by: Bec Hanley
What is this resource?
Information pulled together in response to a Payment Working Group meeting where this question was discussed.
Who was it developed by?
Susanna Glover of Breast Cancer Now.
When might it be useful?
If you're putting together a case for payment for involvement for senior leaders, or if you're just interested in this topic.
HRCI payment policy
Resource was added by: Bec Hanley
Thanks to Health Research Charities Ireland for sharing thier payment policy. This is seen by HRCI as a is a ‘living document’ and will change in response to any guidance from stakeholders, including revenue and social welfare.