Payments Expenses and Costings Guidance

Please consider that:

• The costs of supporting PPIE in health and care research are recognised by major research funders, who expect these to be factored into funding applications from the outset and appropriately monitored via usual grant management.
• Payments and expenses reimbursements are essential to ensuring that PPIE in research activities is as equitable and accessible as possible. We encourage all researchers to ensure that financial concerns are not a barrier to PPIE in their work.
• Equally staff members should not experience personal financial concerns for planning their PPIE (for example, being placed under financial stress if waiting for reimbursement for bulk ordering of e-vouchers).

Currently there are no nationally recommended rates of payment however this guidance uses the National Institute for Health and Care Research (NIHR) payment rates as a guide or benchmark.

In line with the UK Standards for Public Involvement, offering timely, flexible and appropriate reward and recognition to PPI contributors for sharing their time, knowledge and lived experience in the research process is an important part of ensuring PPI is meaningful and can draw on a diverse range of perspectives. Payments and reimbursement of expenses are essential to ensuring that involvement in research activities is as equitable and accessible as possible.

There are many types of PPI in research activities, and PPI contributors can be involved in all stages of the research cycle. There is no ‘one size fits all’ approach to PPI in health and care research, nor indeed payment. Consequently, a flexible approach to payment is required and tailored support is needed to meet specific needs.

The expectation of research funders, is not only that PPI is important and conducive to high-quality research, but also that more diverse communities are involved. Health inequalities have been brought sharply into focus through COVID-19 and meaningful PPI should include involvement from groups experiencing the poorest health outcomes.

Offering and facilitating payments for involvement needs to be sensitive to and take account of a diverse range of circumstances including people in receipt of welfare benefits, people on low or uncertain income, or people who may not have bank accounts. Any payment made to a PPIE contributor is an ‘honorarium’ payment and does not mean they have a contract of employment.

Anyone who does not have a full-time public sector salary is eligible to receive payment for PPI, as are those who do work full time in the public sector but carry out PPI work that is unrelated to their job and do so in their free time.

Accepted best practice is that PPI contributors are acknowledged and recognised for their time, lived experience and contribution through:

Monetary payment

• ‘Honorarium’ payment (paid through electronic bank transfer- BAC).
• *Vouchers (usually e-vouchers).

*May be treated as earnings and viewed by the benefits authorities in the same way as other forms of payment.

Other non-monetary reward and recognition methods via access to

• Training opportunities (for a course).
• Conferences (paying the attendance fee).

Examples of PPIE activities that payments are offered for are outlined below.

Decline payment or ask for a lower amount, which might be important for individuals receiving welfare benefits.

• Choose to donate their payment to a charity of their choice. However, the organisation cannot donate or otherwise reallocate the payment on any individual’s behalf.

• Involvement is not subject to the organisation’s employment policies or procedures, and they do not have a contract of employment with the organisation.
• Role must never form part of organisational structure but can be reflected in governance structures and committees’ terms of reference as appropriate.

Accepted best practice is that ideally, expenses for PPI contributors should be covered in advance; for example, by booking train tickets or accommodation and any reasonable expenses incurred should be reimbursed promptly. At the outset, make clear to PPIE contributors:

• That reimbursement for expenses is not seen as earnings, are not taxable, and will not affect a person’s welfare benefits.
• Which expenses may be reimbursed and which not.
• Where there is an upper limit for some expenses.
• When to expect reimbursement for expenses.

Examples of out-of-pocket expenses costs include:

• Train, bus, tube travel
• Congestion Charge
• Parking
• Mileage
• Subsistence
• Accommodation
• Childcare
• Carer Costs

Understanding tax and employment status related to payment for PPI can be challenging and confusing. Make clear to PPI contributors from the outset that payments made for involvement are:

• Deemed by HMRC as income (this applies even if proxy payment is made via e-vouchers)
• Payment for time is taxable and should be declared for tax purposes.
• PPI Contributors are responsible for their own related pension contributions, National Insurance (NI) and Income Tax.

Section 5. of NIHR Payment Guidance provides more detail and have published a guidance document specifically on this topic here. Please refer to this in preparation for involving PPI contributors.

Benefit conditions are complex and limits on payments that can be received without benefits being affected vary widely and can differ for each person, sometimes from year to year. For PPI contributors in receipt of welfare benefits make clear from the outset that:

• Welfare benefits can be affected if payment for involvement is made.
• Where people are receiving state benefits, they are required to notify Jobcentre Plus of any paid or voluntary activity. They may also need permission to undertake any paid activity.
• Breach of benefit conditions can result in an individual’s benefits being stopped.
• It is the individual’s responsibility to keep to the conditions of those benefits on what they can do and the amount they can be paid.

If a research project is funded by the NIHR, then PPI contributors who are in receipt of welfare benefits can seek free independent confidential advice on the impact that being paid for PPI involvement activities might have on these by accessing the Benefits Advice Service:

Email: PublicPartnerships@nihr.ac.uk

Telephone: 020 8843 7117

The NIHR acknowledges increasing issues arising on the topic of the negative impact of payment on benefits, and further work is needed. However, this is not the current scope of this guidance document.

Sections 8. and 9. of NIHR Payment Guidance provide more detail.

Children: under 16 years old.

Young People: 16 to 24 years old.

CYP involvement and engagement is an integral part of our research work at GOSH provided it does not impact on their health or education.

Below is a checklist for researchers when preparing to involve CYP:

• Consent needs to be obtained from parents/carers for those aged under 16 years old and may also be necessary for young people aged 16 to 18, especially if they are considered particularly vulnerable.
• It is the responsibility of the researcher managing their project to ensure that consent has been received for each child and/or young person involved.
• In principle payments and reimbursement of expenses relates to CYP as much as it does to adults. However, permission must be obtained from a parent carer before offering payment to a child.
• Where a parent carer has incurred expenses to enable a child’s involvement, then it is the parents who should make the claim for their out-of-pocket expenses to be reimbursed.
• Care should be taken to proactively cover children and young people’s travel and subsistence costs, rather than expecting them to pay out of their own funds and await reimbursement, as this may not be possible for some CYP.

Find out more information from the NIHR on involving children and young people in research.

How you plan for PPIE will depend on the stage of your research, as well as the different activities people decide they would like to get involved in.

• If it is the first time that you planned PPI consider where it will be most effective. This might be in a relatively modest way at first, perhaps in just one activity or at one stage of the project. Build on the skills and experience you develop in future projects.
• Do not underestimate the amount of time which can go into planning and delivering PPIE activities.
• Please agree with PPI contributors prior to reading and commenting on documents if you have a cap on the time they can be paid and/or how long they think it will take them to carry out any online review activities.

Example A:

Activity: A task or activity requiring little or no preparation and which equates to approximately one hour of activity or less.

Amount: between £12.50–£25.00.

Reviewing and commenting on:

• a plain English abstract as part of a funding application
• the PPIE section of a funding application
• joining a *focus group to provide verbal feedback on a proposal which is presented
• attending a *Science Board or other meetings as an observer prior to becoming an active PPI member.

Example B:

Activity: A task or activity likely to require some preparation and which equates to approximately two hours of activity

Amount: £50.00

• Attending a research project meeting with related short papers to read and/or review.
• Reading and reviewing short Patient Information Sheets.
• Attending a *Science Board or other meeting, with related short papers to read or review.

Example C:

Activity:  A task or activity where preparation is required, and which equates to approximately two and a half hours of activity.

Amount: £62.50

• Attending a focus or advisory group with related papers to read and review of longer, more detailed documents.
• Reviewing and commenting on lengthy Patient Information Sheets (PIS).
• Joining a steering committee with review and input prior to the committee meeting.

Note: A steering committee will meet during the life cycle of a research project (from proposal to dissemination).

Example D:

Activity: A task or activity where preparation is required, and which equates to   approximately six hours (all-day).

Amount: £150.00

• Attending a conference, co- delivering at training event or panel meeting to co-present.

Example E:

Activity: Supporting the delivery of all day activities that require substantial preparation.

Amount: £300.00

• Chairing or co-chairing a meeting or steering committee.
• Co-production activity.
• Carrying out other discretionary work, which requires additional responsibilities.

Depending on your plans for involvement, there may be other costs not listed in this guidance that you need to account for.

• invoices will be required for some costs
• facilitator time to co-lead a focus or advisory group (for example, a psychologist)
• arrangements will need to be made for this cost via the department involved
• when factoring PPIE activity into grant applications, use a timeline for PPIE activity,
• clearly mapping out how often and how many people will be involved with costings broken down
• please note if bulk ordering e-vouchers using procurement processes, a 10% VAT charge will be added to the order
• Zoom online platform
  • Either use personal GOSH Zoom account for involvement activity up to 40 mins or sign up for monthly Zoom pro account if the involvement activity will be for more than 40 mins.
• transcription Services
  • GOSH has a contract with Verbit Go
• interpreter/Translator Services
  • there is a process at GOSH for booking these services
• venue Hire
  • check accessibility and audio induction (hearing) loops
• catering
  • always check dietary requirements
• print or design
  • if you use a media company or other services, get a quote and add VAT
  • a new supplier may need to be set up on GOSH finance system