Why we updated our co-production payment rates (and what it means): a shared reflection
This short commentary takes the form of a dialogue, stemming from conversations between citizen leader Robert Walker, CEO of the patient and public involvement (PPI) organisation Changes Plus, and Senior Research Fellow, PJ Annand, co-investigator of the Centre for Care.
Early in 2025 Rob asked a simple but powerful question: why were Centre for Care PPI payment rates still based on NIHR figures from 2009, which have never been updated?*
That question gave way to broader reflection about how lived experience in care research is valued and recognised, and led to a change in Centre for Care’s payment policy.
Why revisit payment rates?
Rob:
I was really pleased when the Centre for Care engaged in conversation with me about patient, public and carer payment protocols. As someone who has taken an active part in patient and public involvement across various institutions and organisations, I think payment has been tokenistic. Rates haven’t been increased for decades, and that doesn’t reflect the significant impact that lived-experience perspectives can have. This includes involvement in student recruitment, curriculum design, course validation and research. Lived-experience narratives can really enhance student learning. They bring something personal and often very emotive, which needs to be recognised.
Over recent months I’ve seen a real downturn in involvement with universities because of a lack of resources – people being offered little more than tea and biscuits or a shopping voucher or two. I believe this is detrimental and shows a lack of strategic direction. In some cases, people may have been contributing for less than the minimum wage. For example, those who have been engaged on casual employment contracts, travel, parking and subsistence can’t be claimed. At the same time those people don’t necessarily have the same rights as other employees – pensions for example. When you think about these costs, is £12.50 really a realistic hourly rate in 2025?
That’s why I support the new payment protocol the Centre for Care has introduced. It covers a wide breadth of activity, from meetings through to research, and it makes it clear that contribution is genuinely valued.
PJ:
From my perspective, payment rates that have stayed static for fifteen years risk excluding people who don’t have flexible resources. Participation becomes viable only for those with financial security, counter-intuitively reproducing the inequities that PPI claims to challenge. Participatory work can easily slip into extractivism if the economic conditions that shape it are ignored. I think for both of us, revisiting the rates wasn’t only about inflation, but also recognition more broadly.
What does payment mean beyond money?
PJ:
Beyond just a financial thing, payment also acts as one way – amongst many – of recognising that lived experience has value. The NIHR says that no one should be left out of pocket for getting involved in research – yet their recommended payment rates, unchanged since 2009, have lost real value. For that reason, we used the Bank of England inflation calculator and increased payment amounts accordingly. It’s a fairly modest action in the grand scheme of all that needs to be changed in order to better value lived experience in research, and it is one that both aligns with NIHR principles while recognising that frozen rates perpetuate inequity.
Rob:
I think this will make a difference. It shows that contribution is valued and that participants can be active partners rather than passive guests.
Our new rates
These rates are for those engaging with, but not employed by, the Centre. They are based on NIHR Guidance and have been adjusted for inflation. NIHR guidance is clear that the rates they suggest are a benchmark rather than ‘rules’, and are explicit that: ‘There are no nationally recommended rates of payment and the amounts that public contributors are paid for involvement varies widely, depending on activity and organisational finances/budget constraints. Please note that in most cases involvement payments are not a wage, but a thank you payment for a public contributor’s time, skills and expertise.’
Our rates reflect not only the time given, but also the skills and expertise shared, and the fact that engaging with sensitive topics can take energy beyond the task itself, so people may need time afterwards to reflect or decompress. That said, while lived experience informs the work, no one is expected to share personal stories unless they choose to. The value lies in the insight gained through experience, not in recounting it.
The levels of payment – which can be made as vouchers, cash or bank transfer – are:
- Level 1 For involvement in a task or activity such as reading and commenting on an abstract or document of less than 500 words, which equates to less than half an hour: £20
- Level 2 For involvement in a task or activity requiring little or no preparation and which equates to approximately one hour of activity or less: £40
- Level 3 For involvement in a task or activity likely to require some preparation and which equates to approximately two hours of activity: £80
- Level 4 For involvement in a task or activity where preparation is required and which equates to approximately half a day’s activity: £120
- Level 5 For involvement in all-day meetings: £240
- Level 6 For involvement in all-day meetings that require substantial preparation: £480
Additional payments include:
- Per meeting for out of pocket expenses such as printing and online costs: £8
- Replacement care/PA support costs: to a maximum of £38 per hour, matched to the PA/ care worker’s current rate of pay (based on the 2021 hourly cost of homecare, Unit Costs of Health and Social Care 2021’ by Jones & Burns, and adjusted for inflation.)
What challenges remain, and what comes next?
Payment alone is only one part of the picture. Many PPI initiatives still sit in the middle rungs of Arnstein’s citizen participation ladder, or Think Local Act Personal’s ladder of coproduction – that is, consultation rather than shared control. We see updating our payment rates more as an act of responsibility than self-congratulation. It signals that lived experience isn’t a free resource or something we can take for granted, and that proper recognition of lived expertise needs to be a priority.
We don’t claim to have resolved the politics of payment, or the question of if and how equitable involvement and coproduction can be achieved in university settings. We simply want to offer something to the conversation, and maybe embolden other Centres and teams in our position to revisit their own approaches to PPI and recognition (we will certainly be continuing to reflect on ours…)
* At the time of writing, NIHR public involvement payment rates had not been updated since 2009. Following discussions with our coproduction partners, we sought approval in spring 2025 from our funders, NIHR and ESRC, to increase payment rates at the Centre for Care in line with inflation. This approval was granted. Subsequently, on 16 December 2025, NIHR increased its own payment rates by 10%.
The Bank of England calculates that inflation between 2009 and November 2025 amounted to 61%. We welcome NIHR’s decision to increase its rates and encourage institutions and funders to consider adjusting their own payment rates in line with the inflationary increase identified by the Bank of England, where this is desirable and feasible.
About the authors
Robert Walker of Changes Plus has been a champion of Mental Health awareness since the 1980’s. His personal commitment to helping others through his own experiences, including those of cancer care and treatment, resulted in the formation of Changes Plus. Rob’s contribution to enhancing student experience was recognised in 2012 when he was made a Fellow of The Higher Education Academy and The Institute of Mental Health.
Dr. PJ Annand is a researcher, illustrator and activist, leading the Digital Care and Innovation research theme at Centre for Care. PJ’s current research revolves around health, care and social equity, especially at the intersection of gender/sexuality, housing and technology. PJ’s most recent and ongoing work includes leading the Queering Shelter project, the CANVAS study, and the ‘Beyond Do No Harm‘ impact project, as well as co-leading the Queer Data Manifesto initiative. PJ also leads the Digital Care Top 10 and the Innovations in Queer Care projects at the Centre for Care.
