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 for Involvement Playbook
Resource was added by: Bec Hanley
Guidance put together by the Social Change Agency
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.
UCL Co-production Collective payment policy
Resource was added by: Bec Hanley
This policy was co-produced and published in October 2022.
Marie Curie survey on reward and recognition
Resource was added by: Bec Hanley
Survey run by Marie Curie to ask people for thier views on reward and recognition
Payment for Public Involvement
Resource was added by: Bec Hanley
Guidance published by the National Institute for Health Research which aims to:
- Describe principles of payment and key challenges currently faced in the sector relating to managing and administering payments
- Give direction to those managing and administering payment arrangements to navigate employment status and tax regulations in an appropriate way
- Provide information and links to the most appropriate HMRC guidance
5 Nations project on payment for involvement
Resource was added by: Bec Hanley
An update from the 5 nations working group that is looking at payment for involvement. The Shared Learning Group is represented on this group by Suki Westmore and Katie Gleeson.
Payment for involvement
Resource was added by: Bec Hanley
In 2021/22, members from three member charities - Cancer Research UK, Mind and Turn2us – shared their experience of paying people at a series of seminars. This paper is a summary of these seminars. It looks long - but that's because there are lots of useful resources at the end (e.g. payment policies and processes).