Recognising Value: Payment and Other Meaningful Rewards for Patient Research Partners

Result sharing from the UK PRP Survey (6)

Ways to reward and remunerate PRPs

Our recent Patient Research Partner (PRPs) e-survey gave a snapshot of how PRPs are—or aren't—being compensated for their time, insights and expertise. While many PRPs did report receiving payment for their involvement, and almost equal number of others were only reimbursed for expenses. Some had never been offered payment at all. And a significant portion had declined payment — sometimes people want to voluntarily contribute but often this can be due to concerns about how it might affect their state benefits.

This paints a complex picture. Payment does matter; especially when involvement demands time, energy, and lived experience. For some, it can be the key to participation. Remuneration can help cover the cost of childcare, compensate for time taken off work, or simply recognise the value of a person’s contribution. Without it, many people may find it difficult to engage, even if they want to.

Researchers and organisations looking to offer fair and appropriate remuneration can refer to the NIHR’s payment guidance for researchers and professionals, which provides clear advice on how to navigate payments, reimbursements, and declarations: NIHR Payment Guidance. However, it’s important to recognise that some universities and research organisations also manage their own PPI budgets and may operate slightly differently.

Another grey area is, despite available guidance, that early involvement in research is often underfunded. This can be a major obstacle, particularly during the idea generation or pre-grant phases, when input from patients could be most impactful! Some charities can help by funding the 'thank you' vouchers for PPI. New initiatives like the Pre-Grant Support Fund at King’s Health Partners aim to address this gap, offering recognition and financial support for early involvement, but such schemes are still the exception rather than the rule. Read more here

Barriers also arise from the structure of the benefits system, which can make PRPs hesitant to accept payment due to the risk of losing vital income. These concerns are valid and require more open conversations between researchers, funders, and government departments to explore safer, clearer routes for involvement without penalty.

That said, the idea of reciprocal ‘value’ can also go beyond money. For those who can’t or choose not to be paid, we should be asking them: what else can we offer that’s meaningful?  Opportunities like free attendance at relevant conferences (including travel and accomodation), access to learning sessions, or peer support spaces could add real value. These benefits not only reward involvement, they also align with the reasons people said they got involved in the first place—to help others, understand their condition better, or engage more deeply in research.

My message to reasearchers is, that if we think more creatively about value—including and beyond standard payments—we could build a system that recognises and supports all PRPs, whatever their circumstances. That might include mentorship, co-authoring opportunities, or simply making it easier for people to connect with others who “get it.”

As PRP involvement evolves, perhaps the question we should be asking is: what does respect and recognition look like...for everyone?