Reviewed: December 2025

Public involvement is an essential part of health and social care research. As well as adding value to the research, it also benefits the researchers, the funders, the people who get involved, patients and the wider public. It is important that the voice of patients and the public has an impact on the research that will affect them, but also that lay contributors to research see their input recognised and rewarded. This webpage provides advice on how and why to reward and recognise patients and the public involved in charity-funded medical research.

Contents:

• Why it is important to reward and recognise the involvement of patients and the public in research
• The costs of involvement in research
• Forms of reward and recognition for involvement in research

Why it is important to reward and recognise the involvement of patients and the public in research

There are several reasons to reward and recognise the involvement of patients and the public in research. These include:

• To compensate for the costs of involvement including time and expenses. 
• To show appreciation for the value provided by public contributors to the research process in terms of experience, expertise and skill. 
• To support people who might not be able to be involved with research and increase the inclusion and diversity of people involved in research. 
• To help create a more equal partnership dynamic between researchers and members of the public by recognising and rewarding contributors backed by a formalised and transparent organisational policy.

The costs of involvement in research

The costs of being involved in research as a patient or lay person generally fall within four main areas: financial, time, emotional, and energy.

The financial costs of involvement for individuals can be broken down into costs incurred through involvement, and those incurred by the time not doing other day to day activities.  For example, time spent on involvement may result in loss of income (if an involvement activity occurs during normal working hours) or the need for replacement care for children and other dependents.  Costs incurred for involvement may include travel and parking, meals and overnight accommodation, stationery supplies including printer ink and paper, and telephone call or internet access costs.

Even when these costs are reimbursed, public contributors often initially pay for these outgoings and then seek reimbursement afterwards. This can be a barrier for people who face financial instability, especially since organisational reimbursement processes can be long-winded, taking as long as several months to go through. Consider whether you can support these costs directly so that individuals are not out of pocket and do not have to apply for reimbursement.

Time is needed not just for the involvement work itself but also travel, preparatory reading or training, follow-up activities, applying for and chasing reimbursement for expenses, etc. These may take longer if the contributor has a long-term condition, physical disability or learning difficulty.  You should consider how to streamline these processes, reduce burden and appropriately recognise and reward time taken. 

There is also an emotional cost of involvement.  This can be a substantial barrier for those who are drawing on personal experience of a condition or service (or that of a loved one) as part of an involvement activity. Emotional toll or the fear of emotional toll may deter contributors from taking part in particular types of involvement activity, such as avoiding face to face meetings, or preferring to speak as part of a group rather than as the sole patient representative in a research team. AMRC supporter charity Sands involve bereaved parents in the research they fund on stillbirth and neonatal death, and they support the emotional wellbeing of involved parents by providing a grief counsellor during involvement activities.

Finally, there is an energy cost to involvement in research, and this may be different for different people and forms of activity. Patients with long term conditions may tire quickly, and this may worsen with sustained activities without a break. For some patients, over-exertion may result in fatigue which lasts well beyond the expected recovery period for an able-bodied person, and this should be taken into account during scheduling.

Forms of reward and recognition for involvement 

As mentioned above, public involvement contributors should not be ‘out of pocket’ as a result of their involvement in research. Expenses incurred as a result of involvement should be reimbursed or, ideally, paid for in advance where possible. 

In addition to reimbursement of expenses, funders and researchers may reward public contributors in recognition of their time, skills and expertise. Some contributors may refuse to take any reward for their involvement in a project, which they are of course entitled to do. Where provided, it is important that contributors are offered the option of receiving reward or recognition, with clear assurance that turning it down is a valid option without repercussion. These rewards may be monetary or non-monetary and may be made in single instances every time a contribution is made, or as a single gift at the end of the project. Examples and details are given below.

Monetary rewards 

A common method of reward is financial payment. There are no nationally recommended rates of payment and the amounts that public contributors are paid for involvement varies widely. However, NIHR’s payment and reimbursement rates for involvement can be used as a guide or benchmark although they may not be appropriate for your purposes depending on the activity and organisational finances/budget constraints. As of 16 December 2025, NIHR has increased their rates by an uplift of 10%. NIHR rates are now as follows:

Rate	Activity
£13.80	A task or activity such as reading and commenting on an abstract which equates to less than half an hour. For example, reviewing papers for the development of Alerts.
£27.50	A task or activity requiring little or no preparation and which equates to approximately one hour of activity or less. For example, participating in a focus group to provide feedback on a proposal.
£55	A task or activity likely to require some preparation and which equates to approximately two hours of activity. For example, a teleconference with related papers to read or review a few short documents.
£82.50	A task or activity where preparation is required, and which equates to approximately half a day’s activity. For example, participating in a meeting to interview a small number of candidates who have applied to join a committee or panel, participating in a focus group, or delivering training.
£165	For involvement in all-day meetings. For example, attending a committee or panel meeting as an observer prior to becoming an active public member of a committee/panel.
£330	For involvement in all-day meetings that require substantial preparation. For example, when chairing or co-chairing a meeting or when carrying out other discretionary work, which requires additional responsibilities.

NIHR's own Public Contributor Reward and Recognition Policy also provides separate rates for involvement in NIHR committees. This is not guidance for other organisations unlike the rates above, but may nonetheless be useful context. The rates for NIHR committee involvement are as follows:

Rate	Activity
£165	The daily rate for attending a committee or other formally constituted meeting. This includes preparation and attendance for one day.
£247.50	For attendance at meetings with considerable additional preparation and responsibility, usually funding committee meetings. This includes preparation and attendance for one day.
£330	For attendance at meetings with extensive additional preparation for the meeting, for example a funding committee with an exceptionally large number of applications. This includes preparation and attendance for one day.
£495	For attendance at and preparation for meetings involving assessment of multi- stage, complex grant applications. This includes preparation and attendance for one day.

Proxy payment such as vouchers may also be offered, especially for one-off events or consultations.  Vouchers are usually offered instead of cash payments to children and young people under 16 years who are not in receipt of benefits. 

Please note high street or gift vouchers may be treated as earnings for the purposes of tax and state benefits. This can be an issue for those on universal credit and other benefits as a result of their health condition, as volunteering and voluntary or paid work can affect eligibility for social benefits, or these can be stopped whilst reviewed.

• Funders should highlight to public contributors that as individuals they are responsible for their own tax affairs and ensuring that they are paying the appropriate level of tax.
• Individuals who receive welfare benefits should seek expert, personalised advice before accepting payment for involvement, for example via the free Benefits Advice Service for payment for involvement, commissioned by NIHR from the Bedford Citizens Advice Bureau.  NIHR guidance advises that individuals in receipt of Universal Credit for limited capacity for work may have their entitlement reviewed if their volunteering shows that they can be active for 16 hours or more per week.

When working with an official patient or service user group, another option may be to make a donation or purchase a gift for the group. This gives the group control over how they use the money for their own interests. It is important however to make the payment directly to the group, as payment through an individual may affect their eligibility for welfare benefits or have different tax implications.

Non-monetary rewards 

Non-monetary rewards can be considered, either alongside or instead of financial rewards. It is important to recognise that financial rewards do not work for everyone, and some contributors may feel uncomfortable receiving financial reward for their involvement. This may be due to circumstances around tax or social benefits, because the individual feels it would prevent them from giving an honest opinion, or simply because they feel that involvement is enough of a reward in itself. Non-monetary rewards may include: 

• Tokens of appreciation. e.g., free tickets to a fundraising event, inclusion in a charity draw, a personal thank you in a newsletter etc. 
• Offering and funding appropriate learning and development opportunities to support and recognise the value of the contributions made by members of the public, with certificates to record what learning may have been achieved or sessions attended.
• For children and young people, consider exploring formal accreditation for extended involvement in longer-term projects, for example through ASDAN (Award Scheme Development and Accreditation Network) or the Open College Network in your area.  
• Providing access to facilities or resources such as a library, seminar series and other research opportunities. 
• Awarding an honorary status, such as lay fellow or research partner 
• Keeping those actively involved updated about the progress of your research, including feedback on how their contributions have made a difference, in the short and long term and celebrating successes with those who have contributed to the research.  If their input did not have influence, respectfully explain why. 
• Acknowledging the contribution of members of the public to your research in internal and external reports, publications, posters and presentations. 
• Offering information about other opportunities for involvement and/or participation in research.