PPI in Practice – Recruiting patients and the public
Deciding who to involve
A key message from funders is that all recruitment processes for PPI contributors need to be inclusive and reach under-served groups.
Deciding what knowledge, experience and skills are needed for the research is a good starting point, followed by who can provide this. This is an iterative process and researchers say that who to involve will often develop as the project progresses. The research questions and outcomes may also shift in response to the advice and experience of the PPI contributors.
PPI contributors need to reflect the population that a research study is aimed at. Often they will need ‘lived experience’ as a patient with the condition being studied, or be at risk of the condition, or from a community which is under-served in that area. It may also be important to speak with the family carer or support worker for someone with that condition, or with a professional from a voluntary organisation or charity which represents the condition being researched.
PPI contributors who do not have lived experience of a condition can also bring knowledge and skills e.g. experience of reviewing PPI on grants, plus an outside perspective or contacts for an under-served group.
PPI groups and recruitment websites
PPI groups and recruitment websites in Section 5 of this Guidance are a good starting point for recruiting PPI contributors. These groups can provide feedback and support across the research pathway. The advantages are that they are already up and running, with experienced and committed PPI contributors who are keen to be approached.
Examples are:
- People in Research: This is a national website where people have registered their interest in taking up PPI opportunities. Researchers can also advertise PPI opportunities here.
- Diversity in Research PPI Group: Oxford and Oxford Health BRCs jointly run this group which is open to all researchers and aims to make research more diverse and overcome barriers to inclusion.
- PPI Groups Oxford: Current PPI contributor groups for the University of Oxford, University of Oxford Hospitals and NIHR organisation are there to offer support, advice and guidance at any stage of the research pathway and are an invaluable resource for researchers. Please contact the link person directly.
Advertising for PPI contributors
If no formal PPI group exists for the condition or issue being researched, the next step is advertising for a diverse range of contributors in the right places in an accessible way.
Researchers are advised to contact their communications team to check departmental protocols before making adverts public.
All advertising formats and channels have their pros and cons, in terms of ensuring inclusion for everyone and maximising diversity, so it’s worth using different ways to look for PPI contributors e.g. advertise on Twitter and directly contact a relevant support group.
Recent work with PPI contributors at the University of the West of England showed that people respond better to simpler adverts – less is more – and greater detail on projects can be discussed at a later stage. Co-creating communications with patient and public groups – ARC West
Where to advertise
Actively seeking under-served people or groups in research and supporting them to get involved, means a more diverse group of PPI contributors are included. It also means recruitment may take longer and therefore cost more. It often requires building up a range of contacts and organisations in the community, working with gatekeepers and community leaders, targeting employers, contacting schools or finding specific groups of university students.
Places to advertise could include:
- Arts projects
- Blogs
- Care homes
- Charities and voluntary organisations – websites and mailing lists
- Community groups
- Disease-specific conferences held by charities
- GP surgeries patient groups
- Higher education colleges
- Online forums – Facebook groups
- Personal networks
- Public engagement events
- Social media: Instagram, Twitter, Facebook, TikTok
- Waiting rooms in hospital clinics or GP surgeries – slides on TV monitors
- Youth groups
Template for advertisement for PPI contributor
Template 1
Advertisement for PPI contributor
Become a Patient and Public Involvement Contributor!
Could you help us to improve the research that we are doing into this [insert illness or condition]?
- Have you or are you experiencing [insert illness or condition]
- Do you care for someone with [insert illness or condition]
- Do you work in the voluntary sector with people who experience [insert illness or condition]
We are looking for people to join our [insert the nature of the group/work you are recruiting to]
This work will involve you in [insert number of meetings per year] mostly lasting [insert timing of meetings] at [insert venue]
The project is expected to last [insert months]
You do not need to have any specific skills to join our research project – we are keen to work with people who have living experience of [insert illness or condition] and who are able to explain what that is like and contribute to our group discussions to help make our research better.
We will reimburse all expenses that you have to help us with this work.
We are able to pay Patient & Public Involvement (PPI) contributors for their time.
The rates are currently [insert amount that most readily relates to the work that you have for them and the budget you have e.g. £75 for a 3 hour meeting including preparation and follow up]
If you are interested in this role then please contact [insert main link name, phone number and email]
PPI in Practice – Communicating with patients and the public
Writing in plain English
It is very important to use clear language when writing for the public.
Further guidance is available from the Plain English Campaign https://www.plainenglish.co.uk/files/howto.pdf
It may also be necessary to translate adverts into languages other than English for those who are not fluent English speaker, or to write in Easy Read for people with low literacy levels or learning disabilities, or to use British Sign Language interpreters for D/Deaf contributors. (D refers to those people who are sign language users and Deaf refers to those who are hard of hearing but who have English as their first language and may lip-read and/or use hearing aids).
Social Media
Social media platforms are used daily and extensively by groups of people and organisations worldwide. Social media enables inexpensive information sharing and interactions with large numbers of people across many geographical locations.
Research study findings benefit patients, the public and other researchers and need to be shared widely with these audiences. The NIHR also encourages an open access policy for research findings. Social media offers unique opportunities to share knowledge and involve many people. There are a variety of platforms able to reach a range of audiences.
Each platform currently reaches a different audience:
- Facebook is predominantly used by those aged 35+.
- LinkedIn targets professionals, jobseekers, entrepreneurs, and others who want to create professional networks.
- Twitter has over 15 million registered users in the UK alone with 33% of those aged 15- 24 years .
- YouTube has more than 35 million users in the UK, the most active users are 25 – 44 year olds.
- The number of UK TikTok users is expected to reach 10 million by 2021 with over a quarter of those users being female aged18-24.
Social Media platforms
Social media platforms used by the organisations who produced this Guidance are below.
| Social media links | |
|---|---|
| Oxford Biomedical Research Centre (BRC) | |
| Oxford BRC Twitter | NIHR Oxford Biomedical Research Centre (@OxfordBRC) / Twitter |
| Oxford BRC LinkedIn | https://www.linkedin.com/company/nihr-oxford-biomedical-research-centre/ |
| Oxford BRC Facebook | NIHR Oxford Biomedical Research Centre | Facebook |
| Oxford BRC YouTube | Oxford BRC – YouTube |
| Nuffield Dept of Primary Care Health Sciences | |
| NPDCHS LinkedIn | https://www.linkedin.com/company/nuffield-dept-of-primary-care-health-sciences-university-of-oxford/ |
| NDPCHS Twitter | https://twitter.com/oxprimarycare |
| NDPCHS YouTube | https://www.youtube.com/channel/UCAGxLaM1DgcJXWfYcLgDcTA |
| Applied Research Centre (ARC) | |
| ARC Twitter | https://twitter.com/arc_oxtv |
| ARC YouTube | NIHR ARC OxTV – YouTube |
| Medical Sciences Division (MSD) | |
| Oxford MSD Twitter | https://twitter.com/oxfordmedsci |
Support sharing PPI information and research-related work across Social Media
The communication contacts below provide support to researchers who want to share PPI opportunities or other research-related information across social media networks.
Not all departmental contacts are listed here as each department has their own staff and roles. . Please make direct contact with the communications team for the department required.
| Contacts | |
|---|---|
| Oxford BRC | |
| Roy Probert | Roy.Probert@ouh.nhs.uk |
| Sarah Marr | Sarah.Marr@ouh.nhs.uk |
| Nuffield Dept of Primary Care Health Sciences | |
| Jo Gearing | jo.gearing@phc.ox.ac.uk |
| Gavin Hubbard | gavin.hubbard@phc.ox.ac.uk |
| Applied Research Centre | |
| Gavin Hubbard | gavin.hubbard@phc.ox.ac.uk |
| Medical Sciences Division | |
| Alison Brindle | alison.brindle@medsci.ox.ac.uk |
PPI in Practice – Support and guidance for patients and the public
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
[Template 5 is suitable for more formal appointments and not all sections will be needed]
PPI Contributor working agreement
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.
NIHR recommended payment rate guide
The NIHR has a detailed guide for researchers and its recommended payment rates are here:
Payment guidance for researchers and professionals (nihr.ac.uk)
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 this NIHR page.
Guidance tables
The tables below are offered for guidance only and may vary between organisations. You are advised to check in advance with the organisation or department you are working with as to what is expected be paid.
Lay partner involvement | Expenses? | 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) | No | No |
| Responding to questionnaires | No | No |
| Attendance at consultation events by invitation | Yes | Yes |
| Representation and participation at designated meetings (regardless of what the meeting is trying to achieve) where no, little or occasional commitment is required. | Yes | Yes |
| Evaluating and reviewing documents (unless this is part of ongoing role) | Yes | Yes |
| Helping to write documents (lay summaries, articles for a newsletter, patient information leaflets etc) | Yes | Yes |
| 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) | Yes | Yes |
| 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 | Yes | Yes |
| Leading focus groups, workshops or conferences etc. | Yes | Yes |
| Chairing designated groups or meetings | Yes | Yes |
| Staff recruitment and interview panel membership | Yes | Yes |
| Giving presentations | Yes | Yes |
| Staff training (where the lay partner inputs into staff training) | Yes | Yes |
| Monitoring/evaluating services or mystery shopping | Yes | Yes |
| Development and evaluation of tenders | Yes | Yes |
| Taking part as an active researcher e.g. by interviewing participants | Yes | Yes |
| Co-applicants in research funding applications | Yes | Yes |
| Disseminating results of research (incl. holding events within an outside organisation to publicise research or a given project) | Yes | Yes |
| Suggested Rates of Payment | ||
|---|---|---|
| Full day meetings | £150 | to include all prep and follow-up |
| Half day meetings | £75 | to include all prep and follow-up |
| Short pieces of work | £25 | require little prep or follow-up, such as a telephone meeting or reviewing short documents; 1-2 hours: |
| 2-hour meeting | £50 | No prep or follow up |
| Reviewing document of 50 – 200 pages | £150 |
| Expenses rates | ||
|---|---|---|
| Mileage for private vehicles | 45p | 1- 10,000 business miles in the tax year |
| Mileage for private vehicles | 25p | for each business mile over 10,000 in the tax year |
| Public transport | ||
| Taxi |
| 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 here.
Payment guidance for members of the public considering involvement in research (nihr.ac.uk)
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. Guidance on preparing for and running on line meetings is given here.
PPI in Practice – Guidance for meetings and other PPI activities
Guidance for online meetings
It’s okay to ask questions and make mistakes
Every question is a good question – if one person is asking it, they need to know the answer and probably others in the meeting do too.
Confidentiality
We help people to share openly in the meeting by not talking about other people’s personal information outside of the meeting. We are aware of the space we are joining the meeting from. If there are other people in the space we are using, who are not part of the meeting, we try to use headphones to maintain confidentiality, and be aware of the information we are sharing when we speak.
It’s okay to leave the meeting if you need
We can leave the meeting for personal reasons or answer emergency calls, but stay focused on the meeting otherwise.
Respect each other
Be kind and respectful. We can challenge each other’s ideas in a friendly and supportive way. We don’t judge each other for our differences or ideas.
Everyone is equal
Everyone needs to feel equally valued so they can take part. Everyone’s ideas and contributions are equally valid.
Speak one at a time and listen well
We take turns to speak and give the person speaking our full focus and attention. If you can. Use the ‘chat’ and ‘raise your hand’ tools to let the people chairing the meeting know you would like to speak.
Plain speaking
We try to avoid acronyms or jargon. We explain them if we need to. We explain what we mean and check people understand.
Speak clearly, slowly and loud enough
We make sure people can understand us when we speak.
Camera and sound
We try to keep cameras on during the meeting (unless there are confidentiality, connectivity or personal reasons) to help us connect better with each other in the virtual world. We mute our sound when we are not talking or having a conversation.
Try to stay on topic
There is always a lot to cover in meetings, so we all try to keep on topic. If we think the chair is letting things go off topic, we respectfully let them know.
Guidance for in-person meetings
Advance preparations
Venue accessibility
Coming to a University building, or a strange place, for the first time can be daunting for people and needs to be made as smooth as possible.
The meeting room needs to be accessible for people with physical and sensory impairments, with disabled toilets nearby, and accessible to people using a wheelchair, or pushing a walker or buggy.
Provide the venue address and a map, plus any other details necessary to make it easy to find for someone coming for the first time. Provide a contact phone number in case of last minute difficulties. Consider if people will need to be met, or directed to the actual room. Put up clear signs for the meeting!
Transport
Disabled parking needs to be nearby and reserved for the meeting. The venue should be accessible by public transport especially in Oxford or other busy towns with limited parking. If parking permits are required then let people know in advance and support them on the day.
If parking is not possible, or the venue is noisy or uncomfortable, then be prepared to travel and hold meetings in offsite venues in local communities.
Arranging and paying for a taxi may be necessary to include vulnerable or disabled contributors.
Catering
Offer tea and coffee on arrival, and in the break, and allow time for this in the agenda.
Cater for a range of diets (e.g. vegan, Halal, vegetarian, gluten free, allergies etc.) and ask everyone to let you know their preferences in advance. Be sensitive to the patient population you could be meeting with, e.g. people with diabetes.
Expenses
Provide up-to-date travel expenses and payment forms on the day – even better if they can be emailed in advance.
Some people may be embarrassed to claim if others are not; consider offering forms in a sealed envelope.
Timings
Long meetings can be tiring, especially if PPI Contributors have a disability that makes sitting or concentrating difficult for long periods. Planned breaks will be welcomed by all.
Evening or weekend meetings may be more convenient to attract shift workers, working age and young adult participants and parents.
Meetings need to end on time, people may need to get back for caring responsibilities, catching buses etc.
Papers – language and jargon
Share the agenda for your meeting – not everyone may know what an agenda is so it needs to be jargon free.
Give plenty of notice of meetings – do not assume that because your PPI Contributor is retired, for example, that they do not have other commitments.
Bring copies of any paperwork sent to the attendees; do not assume that they have been able to print them out at home.
Supporting contributors
Fully involving those with a disability, or long-term condition, needs thought and planning ahead. Asking the person what support they will need for the meeting is a good starting point, as is asking their family carer or support worker what support the person needs.
Managing the day
Introductions
Greet each attendee and start the session with introductions.
Name badges may help for those with poorer memories or who did not hear a name.
Name plaques stood in front of the person are also helpful if distances make name badges hard to read.
Housekeeping
Do basic housekeeping; make people aware of fire alarms and exits, toilet location etc.
Meeting purpose
Remind people of the purpose of the meeting, run through the agenda and mention start and end times and breaks. Clarify when it’s ok for people to ask questions. Explain how the information from the meeting will be used.
Ground rules
Discuss and agree these at the start of the session which could include:
- Confidentiality and anonymity – make a clear statement about the confidentiality of the information provided by participants. Ask people to respect each other’s confidentiality too.
- Listen to and respect each other’s individual views- remind people not to talk over one another.
- Participation from everyone who wants to.
- Challenging points of view not individual people.
- Honesty and an open attitude
- Agree stick to the agenda items and not go off topic
- Mobile phones and pagers off or on silent
Contributing
Make sure that everyone has the chance to speak – you might need to actively encourage quieter members to do so, and discourage some from dominating proceedings.
Try to avoid becoming defensive if there is criticism or problems are raised as this will stifle further conversations about these issues.
Make sure that PPI contributors’ input is minuted.
You could ask somebody independent to run your focus group/workshop.
Record the conversation, so that you can concentrate on listening and questioning – get their permission to do so.
Endings
Thank the group for their time at the meeting.
Ensure that people are clear about what will happen next; will there be another meeting? Will there be further correspondence? What are the next steps for the project?
Check people have filled out their expense forms and know what to expect from the reimbursement procedure, such as how long it can take.
Provide an opportunity for feedback on how well the meeting/session worked – verbal or written –and what could have been better, especially if there is another meeting.
Write to people and thank them for participating.
The guidance above was drawn up by Co-production Oxfordshire, funded by Oxfordshire County Council and adapted by the BRC Oxford Diversity in Research Group
Terms of Reference
A PPI group in whatever shape or form, needs to discuss and agree its own Terms of Reference at the beginning of its work and to review these occasionally.
How to do this is a frequently asked question! See Template 6 below for guidance.
Template 6
Terms of Reference for PPI groups
The role of the Group
The role of the Group is to advise on the development and co-ordination of [insert project details].
Responsibilities
- Provide views on the plans for design, implementation & evaluation of applied interventions
- Provide advice and guidance to progress the work of the [insert details of the project]
- Develop policies to support the development of [insert details of the project]
- Provide information and advice based on lived experience
- Guide and advise on the dissemination of the project
- Guide the development of recommendations for further work.
- Request researchers to speak at meetings and may request feedback with regard to the recommendations it makes.
- Each member is responsible for saying if an item is confidential and not for discussion outside the Group
- When sharing documents, members should make it clear if there is a restriction due to copyright or confidentiality
Ways of working
- The Group will be chaired by [insert job role] and co-chaired by [insert PPI Contributor]
- The Group will meet online/face to face minimum of [insert times a year].
- Members will receive papers [insert timescale] before each meeting.
- Administration for the meetings will be provided by [insert job role]
- Members may be contacted between meetings for advice.
- Sub-groups may be formed to work on specific issues.
- Individuals may be co-opted to provide specific advice and expertise.
Membership
The Group will have [insert details specifying staff roles and contributor PPI roles].
Group membership would normally last for a period of [specify*] years but there would be the opportunity to (alter as appropriate) continue for another year. After [*] years the opportunity to participate would be opened up to new people. Rotation of the membership will be staged to ensure that continuity is maintained.
Non-members may be invited to join Group meetings on a one-off basis to aid discussion of a particular topic, for example, as speakers, observers or invited guests.
All members should declare any conflicts that may arise from any other studies or organisations they are working with.
Review
The Group will review the relevance and value of its work and membership, annually.
Consent to share personal information: privacy and data protection
PPI contributors need to give permission for their contact details to be shared and kept during and after the project, e.g. to have updates on the project and be thanked.
This can include for example:
- a copy of their application / expression of interest form
- a copy of their working agreement / appointment letter
- notes taken at their interview
- training that they have undertaken
- financial details needed for payment
- all review records
- copies of letters provided for them to the Job Centre or outlining different ways of paying them
See Template 7 below for guidance.
Template 7
Agreement for sharing names, emails and tasks
Patient and Public Involvement role with Oxford University and Oxford University Hospitals NHS Foundation Trust (OUH) and Oxford Health NHS Foundation Trust (OH)
This agreement asks for your consent in relation to sharing email addresses, names and task feedback with a limited number of other people who are working on this project or future similar projects.
We are asking your permission to share your name and email with other members of this group.
Please tick this box or write YES if you consent.
We are asking your permission also to share your name and email with some staff in our organisations. This is in order to invite them to meetings or to ask if they would like involve you with patient and public involvement work during this project or in the future.
Please tick this box or write YES if you consent.
We are asking your permission also to share your task feedback with people in the group and a small number of staff in our organisations. Your tasks will be anonymised and you will not be identifiable.
Please tick this box or write YES if you consent.
Please get in touch if you have any questions about this agreement.
Please sign that you agree to the above – you can type your name and email back to [insert contact email]
Signed [PPl Lead ] …………………………………………………………………….
Signed [contributor]………………………………………………………………………
Thank you for being part of this group. We hope you will enjoy it and we very much appreciate your commitment to it.
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