Support and guidance for patients and the public

Guidance and templates

PPIE staff from across MSD and the local NIHR organisations have developed guidance and templates to support you in your PPI activities. Some of these are published within this guidance and others such as 'Key points when recruiting and working with patients and the public'; 'Recruiting patients for PPI from clinics'; 'Raising difficult issues', and templates such as for confidentiality agreements or PPI group terms of reference are available from your PPI lead - please feel free to contact them.

Role descriptions and interviews

Formal application processes and interviews can be a barrier to PPI, particularly for those who are not usually involved. Sometimes it is unavoidable due to the number of people interested, so it is essential to make the process accessible and inclusive to all.

Some PPI roles may require a formal role description, application and interview process e.g. appointing a PPI contributor on a steering group. Other roles are more informal e.g. when PPI contributors are involved on as a one-off or om the short-term.

PPI contributors want to have their roles clearly defined and explained including:

Purpose of project and how you expect them to be involved
Length of project
Time commitment
Payment

Making this information clear at the start is important to recruit and retain PPI contributors.

A role description plus a person specification are designed to set out the skills and experience needed on the project. For smaller projects or where PPI is short, an email or conversation on the phone giving this information is all that’s needed.

If formal interviews for PPI contributor roles are necessary, it is best done in a similar way to staff interviews e.g. find a meeting room, have at least two interviewers, take full notes and have a consistent set of questions for each interviewee. Candidates should be offered travel expenses, but not payment for their time at the interview.

If the person is not appointed the role, it is important to contact them within a few days to explain why they were not selected and, if possible, to signpost other ways that they can get involved.

Templates for working agreements

Template 2: PPI Contributor expression of interest

Template 3: PPI Contributor role description

Template 4: PPI Contributor person specification

Template 5: PPI Contributor working agreement

Template 2: PPI Contributor Expression of Interest

Name: Address: Telephone Number: Email Address (wherever possible): Are you applying because you work for the voluntary sector supporting people with a condition related to our research? If yes please tell us the name of the voluntary organisation and your role within it Please tell us why you would like to be involved in our research and in what project Please tell us what skills you believe that you would bring to this role We want to support you to be able to get as involved as possible. Please let us know if you have any specific needs that we can help with, for example: Have reduced mobility and require a wheelchair Use a wheelchair and need a parking space Require a BSL interpreter Require a translator Require easy read versions of information Require large print versions of information Do let us know if you have more questions at this stage.

Template 3: PPI Contributor Role Description

The main purpose of this role is to provide a public and patient perspective into the research project [insert name] [The list below has some but not all of the key tasks for a PPI Contributor role description. There are tasks not listed here, so please adapt it as needed.] For this project you will be asked to: Attend and contribute to meetings which will plan, monitor and review the work of this research project Take part in telephone conference calls or to work remotely via email, not meeting in person with the researcher or other PPI contributors Provide specific insights based on your own experience (or that of people you support) in relation to a specific illness or condition, or your experiences of health services. While we ask that you speak directly from your own experiences, PPI work is not an opportunity for discussions about the specifics of your medical treatment. Your input should be aimed at helping the researchers to understand their work from the point of view of someone who experiences the topic of the research Review documents – assessing their suitability for a general public audience Contribute ideas on the suitability of research for potential participants Contribute ideas and input into recruiting or advertising to potential research participants Write new documents Review plain English summaries of researchers’ work for their readability Contribute to the design of questionnaires or other aspects of the research which will be received by patients and members of the public Help interpret the results that researchers are gathering Give ideas on how to disseminate the results of research to the people who would most benefit from them Provide feedback on the impact of your PPI role

Template 4: PPI Contributor Person Specification

[The lists have suggested key tasks, not all: please adapt them as needed.] Essential Requirements Willingness to express your views at meetings attended by a range of professionals Willingness to keep asking questions until you get enough information or an explanation to fully understand what people are talking about A willingness to listen to, and consider, different perspectives and opinions An ability to challenge current thinking in ways that are both creative and supportive The ability to manage and plan your own time The commitment to attend meetings as agreed (medical condition allowing) The commitment to prepare for meetings by reading information sent to you in advance To give and maintain a firm commitment to keep our research confidential and declare any conflicts of interest if they arise Willingness to review your involvement with the support of your lead contact Some knowledge of the NHS; how it is structured, funded and managed Some knowledge of how the government supports health research Some understanding of how research is conducted in a health setting Requirements for a PPI contributor with a specific perspective For this project we are looking for people who have Experience of [insert illness or condition] within the last 5 years Experience of caring for someone with [insert illness or condition] within the last 5 years Experience of [insert treatment or procedure] as part of your healthcare treatment Current work in a role where you support people with [insert illness or condition]

Template 5: PPI Contributor Working Agreement

[Template 5 is suitable for more formal appointments and not all sections will be needed] Introduction Thank you very much for agreeing to be part of [insert title of project]. This project is part of the work of [insert Department] and is funded by [insert funder]. The project aims to [insert main aim of the project] and you will be given further information on this as part of your induction Your main link person throughout the work of the project will be [insert name, email and phone number – put in bold]. Please feel that you can contact this person with any concerns or queries you may have at all times, not just at fixed meetings. Their working hours are [insert working hours] Involvement and Time Commitment As discussed the project is expected to last [insert months or years]. If this changes at any point you will be informed and given the option to extend your involvement if appropriate. You will be expected to give the following time commitment: [Insert all meetings that the PPI Contributor will be expected to attend – frequency and length] [Insert how much time they will need to spend preparing for the meetings listed above] [Insert how much time they may be expected to spend reviewing documents or working on other items such as lay summaries] [Insert any time that they may be asked to be in virtual meetings or telephone conference calls] [Insert any other time commitment that relates to your work such as helping with the research itself by interviewing participants] This will not be significantly altered without your agreement. The meetings that you are asked to attend will generally be held at [insert venue giving directions and travel / parking / public transport arrangements]. If you are unable to attend please give your apologies to your link contact, but if there is an emergency on the day you can contact the venue by phoning [insert venue phone number]. We will give you plenty of notice if the venue changes. Specific Requirements We want you to feel fully able to contribute to our project in all of the ways that we ask you to do. You should have let us know in your application form if you have any specific support requirements and this is how we will ensure that these are accommodated [insert specific arrangements you are making where appropriate]. However, if there are any other needs that arise at any time please do not hesitate to let us know. Expenses and Tax Implications As agreed with you we will [insert whether you will just reimburse their expenses or if you will pay the PPI Contributor and reimburse their expenses]. The expenses that will be reimbursed include [insert travel, carer costs, child care, stationary/printing/phone costs and any others that you are offering]. For your work on this project there is also payment for your time. The process for having your expenses reimbursed and payment for your time is that you complete an expense claim form which we will provide. These payments are regarded by HMRC and the Jobcentre as income and you will be responsible for telling the HMRC or the Benefits agency, if required by them, of any payments received. [Only include the next paragraph to those who do not want payment for their time] You have refused the payment for your time that is offered to our PPI Contributors. You may use this agreement as proof with the Job Centre Plus if appropriate. If at any point in the future you wish to change your mind about accepting payment please speak to your main link contact who will make the necessary arrangements, but please note no payments will be made retrospectively. Contractual Standing PPI Contributors are not employees, officers or agents of Oxford University. You are expected to adhere to this agreement but are not subject to Oxford University’s employment policies and procedures. You are a volunteer and so can withdraw from the project at any time. We very much hope however that you will give notice whenever you can and that you will also let us know why you are withdrawing. There will be an opportunities for you to ask additional questions and give and receive feedback on the role throughout the research. If at any point you are having any difficulties or concerns with the work that you do not feel able to discuss with your [link contact] then please speak to the PPI Coordinator. We very much hope that you will enjoy the work of being a PPI Contributor on our project and very much appreciate your commitment to it. With all best wishes [insert project lead or theme lead signature, name and job title] Signed by PPI contributor _____________________________________________________ Dated by PPI contributor ___________________________________________

Induction and welcomes

PPI contributors say feeling welcomed by a chat with a lead contact and knowing what they are expected to do is extremely important, and this needs to happen soon after they join a project.

Some departments and larger PPI groups have developed established joining information for contributors when they sign up.

Joining information should be in accessible format if needed (e.g. easy read, audio file, large print) and include:

Lay description of the research project and methods with a glossary of terms and acronyms
Information about the full research team members
Information about other PPI contributors and opportunities to meet them
Opportunity to see the research venue, and/or meet some of the researchers
Meeting papers 1 – 2 weeks in advance
Phone/email contact before and after meetings for any queries
Clear instructions on how to claim expenses and payment

Training and support for PPI contributors

PPI contributors who are being asked to share their lived experience, or to offer a different perspective, do not usually need formal training. They bring all they need with them and should be valued for that.

Contributors also need to feel supported by the research team so they can contribute meaningfully e.g. given specific time at a research meeting to comment or checking that they understand a more complicated procedure. Often simple things, like keeping them up to date with the progress of the study or a phone call/Zoom call to provide information and answer questions, provide the support they need to do the work.

Training may need to be offered where there is a specific ask of the contributor e.g. reviewing or interpretation of the data, because the starting knowledge and experience of PPI contributors varies. Researchers need to ask the PPI contributors to think about what they would find the most helpful way of acquiring those skills.

Specific training can also help address some of the barriers around the power imbalance between researchers and PPI contributors and help them to communicate their perspectives more effectively e.g. chairing or facilitating a meeting or running an advisory group. Mentoring with a more experienced PPI contributor can also work well as a way of building up confidence. PPI contributors may also benefit from the opportunity to attend events and conferences.

Thanking and giving feedback to PPI contributors

Thanking PPI contributors in a genuine way for their work was ranked by contributors at the Oxford BRC, as the number one way of encouraging PPI contributors to stay involved. The appreciation needs to be meaningful for the person receiving it and personalising the feedback is the best way. Examples of ways to say thank you include:

Thank you emails, letters, text messages or in person – all count
Letter of appreciation from the head of the research project at the end of the study
Card signed by the project team
An annual afternoon tea or other event
A certificate of attendance or participation

As research projects end PPI contributors have gained valuable knowledge, skills and experience needed by other research studies. Building the infrastructure around PPI contributors is essential for good research, and signposting to other PPI opportunities increases a skills base and shows PPI contributors that they are valued.

Feedback on the research outcomes

PPI contributors say how much they value feedback on the impact PPI has made on the project. They also want feedback on project on progress and outcomes, for example:

What is being done with the evidence and analysis
What publications has it gone into
What further research is happening

Examples of ways to do this are:

Tracking the actions from meetings and giving verbal feedback
Quarterly updates on progress from a trial steering committee
Publishing findings – via an accessible website – so the links can be shared easily and as widely as possible
Creating an infographic or short film on social media e.g. Youtube or TikTok
Asking the departmental communications team to publicise across the department/ organisation via newsletter, website, Facebook page, Instagram and Twitter
Showcasing results by running an event (or piggy-back on some other internal or external event)
Producing a flyer for GP practices giving a web-link to results
Sending postcards to PPI contributors reporting on the research and where/when results will be available
Sending a final lay summary

Payment for PPI contributors

Offering to pay PPI contributors for their time, out of pocket expenses, replacement care or personal support costs and travel is standard good practice. It is extremely important to budget for PPI costs in the research funding application because it is not usually possible to get grants to cover this later.

PPI contributors should be offered reimbursement of expenses and payment for the majority of activities. However, there are some activities where it is not necessary to offer payment for time (see table below). Some PPI contributors do not wish to be paid, but, where applicable, the offer should always be made.

Some PPI contributors say that form filling and payment procedures can be very confusing, and even stressful. The financial language is often unfamiliar, and it can feel intrusive to be asked for personal financial details. It is important that the process is explained fully and people are supported in the process. It is also important to make payments as straightforward and as quick as possible.

The NIHR has a detailed guide for researchers and its recommended payment rates are here: Payment guidance for researchers and professionals.

The NIHR launched new guidance in June 2022 to help organisations, researchers and involvement staff to pay members of the public who contribute to research. Find out more on NIHR.

Payment guidance

The list below is for guidance and may vary between organisations. You are advised to check in advance with the team you are working with as to what payment will be available.

For the first two on this list, neither expenses nor payment for time would be paid. For all the others, the usual practice would be for you to receive reimbursement for expenses and payment for time, but always check this before agreeing to any work.

No expenses nor payment for time

Attendance at open or public meetings/ consultations and giving an individual view, no commitment required (and be very much for their personal benefit, in which case there may be less need to pay them for their time)
Responding to questionnaires

Expenses and payment for time

Attendance at consultation events by invitation
Representation and participation at designated meetings (regardless of what the meeting is trying to achieve) where no, little or occasional commitment is required
Evaluating and reviewing documents (unless this is part of ongoing role)
Helping to write documents (lay summaries, articles for a newsletter, patient information leaflets etc)
Participating in training necessary to carry out involvement work at the Leadership level. (This will be negotiated individually; some training will enhance the lay partner’s CV)
Representation and participation at designated meetings (regardless of what the meeting is trying to achieve) where in-depth commitment is required; for example lay partner on Strategic Board over a 12-month commitment
Leading focus groups, workshops or conferences etc.
Chairing designated groups or meetings
Staff recruitment and interview panel membership
Giving presentations
Staff training (where the lay partner inputs into staff training)
Monitoring/evaluating services or mystery shopping
Development and evaluation of tenders
Taking part as an active researcher e.g. by interviewing participants
Co-applicants in research funding applications
Disseminating results of research (incl. holding events within an outside organisation to publicise research or a given project)

Suggested rates of payment

Full day meetings (to include all prep and follow-up): £150
Half day meetings (to include all prep and follow-up): £75
Short pieces of work: £25
2-hour meeting (no prep or follow-up): £50
Reviewing document of 50-200 pages: £150

Expenses rate

Mileage for private vehicles (1-10,000 business miles in the tax year): 45p/mile
Mileage for private vehicles (for each business mile over 10,000 in the tax year): 25p/mile

Care costs

Cost of a paid carer providing the PPI contributor’s caring role in their absence
Cost of a paid carer supporting the PPI contributor to attend the meeting due to their own support needs. This should include travel/accommodation/subsistence requirements and hourly costs

Tips on payment procedures

Procedures vary across departments and researchers need to get advice from their departmental finance team on what forms are required and what to do if PPI contributors request cash, vouchers or cheques
PPI contributors who receive state benefits need support to ensure their benefits are not reduced by accepting payments or reimbursements
Payment Request Forms may require, the PPI contributor’s contact details, bank account details and National Insurance number
Record and track PPI financial transactions to respond to queries from finance staff or PPI contributors
Keep receipts and forms until the end of the project, and then ask finance colleagues about disposal procedures for the records
Encourage the PPI contributors to keep their own records of any payments they receive – it’s easy to get confused by lots of smaller transactions plus remittance forms and emails

Benefits advice and support

It is important to inform PPI contributors that their benefits may be affected if they receive PPI payments, including job seekers, disability benefits and statutory maternity pay. There are strict limits on the amount of money that people receiving welfare benefits can earn.

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. 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.

It is advisable in all cases to advise PPI contributors to seek advice from an appropriate source, and know where to go for advice and guidance or where to signpost contributors. Support is available to researchers and PPI contributors via:

NIHR

NIHR gives PPI contributors on NIHR funded projects detailed guidance on where to get individualised support and guidance on how their state benefits could be affected.

PPI contributors need to know which NIHR-funded project they are working on and then contact the NIHR Centre for Engagement and Dissemination ced@nihr.ac.uk or call 020 88437117.

It is strongly recommended that PPI contributors in receipt of state benefits contact this helpline prior to any payment or reimbursement, to ensure that their benefits are not affected. See Section 8 of the NIHR guidance: Payment guidance for members of the public considering involvement in research.

Disability Rights UK

Helpful online source of information and advice on benefits. You can also obtain copies of their factsheets and publications by contacting Disability Rights UK on 0330 995 0400 (this is not an advice line).

Guidance on preparing for and running online and in-person meetings.

Covid-19 has prevented much in-person working and researchers and PPI contributors have become adept at online working. Online working has had many benefits in terms of inclusion – but there is still room for face-to-face working and this has a range of benefits too.

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