Patient and Public Involvement

Patient and Public Involvement

Tips and tools

Starting point

It is helpful to start by writing a couple of paragraphs outlining your study in plain English. That is using language that is clear and concise, with no unexplained technical terms or acronyms. It is not about being patronising or simplistic; it is about being clear and describing things in a way that can be understood easily by non-specialist readers.

There is a guide to writing plain English on the Plain English Campaign website:

Begin to think about your expectations of public and patient involvement in your study:

What do you expect involvement to deliver?
How many people you want to involve?
What knowledge or experiences you would like the people you involve to contribute?
What sort of activities will you want them to be involved in?
Would you like to meet face to face? Talk over the telephone? Start an email or web based discussion group? Do you need to send them papers to review by post?
Will they need to have IT skills and internet access?
What other skills might they need?
What sort of time commitment will you be asking them to make?

Then you will need to think about what resources you need to have in place to support the sort of patient and public involvement you want

You may need funds for out of pocket expenses– especially travel– as well as “Thank You” payments
Have you thought about training and support needs?
Is there capacity to support people with different needs like motor, visual or cognitive impairment?

INVOLVE publish a useful guide to budgeting for PPI:

They also have an online tool to help calculate the costs:

Things to consider when planning aninvolvement meeting

In no particular order:

Booking an accessible room: Are there disabled toilets on the same floor? Lifts? Unavoidable steps?
Is it somewhere participants are likely to feel comfortable meeting?
Is the venue accessible by public transport?
Is there disabled parking and easy access to the building? Will you need to provide parking permits?
Make sure those attending are aware of the address of the venue, the time of the meeting etc. If possible, send out a map and clear directions for travel by car, bus, bicycle or train.
What are the arrangements in your institution for booking taxis for those who need them – do you have an account that you can charge or do participants have to pay and claim the money back?
Arrangements need to be made for when people arrive. Who will let them in? Hand out car parking permits? Show people to the room?
Think about the time of day you intend to hold your meetings. Early mornings can be difficult, particularly for participants with care needs or responsibilities.
Consider evening or weekend meetings, particularly if you need to attract working age and young adult participants.
Is it possible for people to contribute remotely, via Skype?
Be clear what the meeting is about and have an agenda or plan for how it will run.
Don’t make the meetings too long; give people a chance to contribute as well as listen, and plan breaks.
Create an atmosphere where people feel able to share ideas.
Think about refreshments and dietary requirements: Do any of your participants have diabetes? Are they vegetarian? Gluten-intolerant?
Provide up-to-date travel expense/payment forms and ensure they are filled out correctly. Is it possible for out of pocket expenses, like travel costs, to be reimbursed on the day? Is there any ‘thank-you’ payment? Have you made all this clear to participants? Will they need to bring bank details?

More detailed notes for facilitators

Before the meeting

If possible ensure there will be two facilitators available and that they both clearly understand how the meeting is to be run.

Consider providing basic refreshments such as tea and coffee on arrival, and allow time for this in the agenda. If the meeting is longer consider whether it is appropriate to provide a light meal and make arrangements for this. As a rule of thumb you might think about providing a meal if the meeting is to take more than three hours, or is timed to run over lunchtime etc.

Ask people if they have any special dietary needs (e.g. vegetarian, gluten free etc.) and be sensitive to the patient population you could be meeting with, e.g. people with diabetes. Make sure you have drinks and snacks available.

When thinking about your venue, try and visit to check it out before booking. Is the room you are planning to book really accessible? Does it have level access or a lift? Is there space for someone with sticks, a wheelchair or walking frame to manoeuvre comfortably? Are there disabled toilets on the same floor? Is there a hearing loop? What other facilities might you need? Some participants may find long corridors or heights a challenge. If possible, ask participants about their requirements and build these into future planning.

Make sure those attending are aware of the address of the venue. Some venues can be hard to find so a map can be helpful. It is also useful to send people details of public transport routes and cycle paths, particularly if parking is restricted.

Check if any who do drive to the venue will need parking permits, whether any participants have blue badges, and whether there are disabled parking spaces within easy access to the building – are there enough for all those who need them? Check your institution’s policy on for booking taxis for those who need them. Are you able to do this on the university's account or do participants have to pay and claim the money back?

Send out paper work and directions for the meeting in advance. If possible, allow two weeks between sending materials and holding the meeting to allow people time to read and prepare, longer if you are sending a lot of reading or complex material. Send out a guide to the meeting agenda in advance; make sure people understand the subject of the meeting, the time it will start and finish, as well as whether there is any catering, what breaks there will be, etc.

Paperwork should be in a plain font (e.g. Arial or Calibri). The font size should be at least 12pt. Check if any of your participants need it in another format, e.g. large print, braille, electronically or on coloured paper. Dyslexic participants may require papers to be double spaced in simple fonts on light yellow or green paper.

Think about you plans for the meeting from the perspectives of the people you hope to involve. This might affect the time of day you intend to hold your meetings. Early mornings can be difficult, particularly for participants with complex care needs, they may have to wait for assistance. Some participants may have to fit involvement round caring for others. Working age and young adult participants might be more able to contribute to evening or weekend meetings. For participants who are vulnerable to infection, virtual meetings through a webinar or teleconference might be more appropriate.

Another consideration when planning the timing of a meeting is the distance participants will need to travel. An early start might require overnight accommodation: is there provision for this in your budget? Have you allowed sufficient funds to cover the distances people might be travelling?

Find out about how to reimburse your participants. You will need up-to-date travel expense and payment forms and ensure you know how they need to be filled out. Is it possible to pay out of pocket expenses on the day? Some participants may struggle if they have to wait several months before reimbursement arrives. Make sure you let participants know what the arrangements are and who to contact if they have any problems.

Advise participants that they may need to declare any ‘thank-you’ payments. Detailed guidance on payments is available from INVOLVE:

Plan the meeting – what do you need to get out if it? What will the attendees get out of attending? Don’t make the meetings too long. Plan a balance of different activities, giving people a chance both to speak and to listen, avoid talking ‘at’ people for long stretches. Make sure you plan in enough breaks, give people some time to socialise and share ideas with each other.Think about how you will both gather and give feedback about the meeting.

On the day

1. Setting up the meeting

Arrangements need to be made for when people arrive. Who will let them through the door? Hand out car parking permits? Show people to the room?

Ensure the room is comfortable and that the seating allows participants to move easily; as well as see and interact with each other.

Bring with you a copy of any paperwork already sent to the participants, agendas, and hand-outs.

2. Starting the meeting

Greet each participant and start the session with introductions. It’s a good idea to get each person to introduce themselves and say a little bit about why they came; this helps break the ice and makes people more confident about contributing later on.

Remember basic housekeeping; make people aware of fire alarms and exits, toilet location etc.

Remind people of the purpose of the meeting, run through the agenda/plan and mention the beginning and ending times, as well as whether there will be any breaks.

Outline the ground rules of the session. This can be negotiated by the group. You may need to agree etiquette for mobile phones. Some people may need to keep their phones turned on, for example because of caring responsibilities. Is the group happy for them to have an audible alert, or would they prefer phones set to ‘vibrate’? Should people leave the room if they have to take a call?

There may be other agreements you need to negotiate that are specific to your group, venue or activity.

Is it OK for people to ask questions at any time? Remind people not to talk over one another. Ask people to respect each other’s contributions. Make a clear statement about the confidentiality of the information provided by participants. How will the information from the meeting be used? Ask people to respect each other’s confidentiality too.

Ask if there are any questions before you start.

3. During the meeting

Ensure all members have the chance to participate, encourage those who talk less to share their thoughts. Try to avoid one or two members dominating the meeting.

If there is criticism or problems are raised, try to avoid becoming defensive, as this can stifle further conversations about these issues. Make sure there are ways that these issues can be fed back and learned from.

4. Closing the meeting

Avoid letting the meeting run overtime; people may need to catch busses or trains, or get back to fulfil caring responsibilities etc.

Ensure 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?

Ensure people have filled out their expense forms and know what to expect from the reimbursement procedure, such as how long it can take, who to contact if there is a problem or delay, etc.

Thank the group for their time.

Provide an opportunity for feedback – verbal, written,and/or online.

5. After the meeting

Write to people and thank them for participating. Summarise what happened and let them know what will happen next. Again invite people to give you feedback – this is vital in helping you learn and improve your practice.

A lot more advice and valuable resources are available from the INVOLVE website:

The PenCLAHRC Patient and Public Involvement team: