Guidance for meetings and other PPI activities
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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.
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.
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
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!
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.
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.
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.
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.
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
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.
Do 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 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.
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
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.
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
Ways of working
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.
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.
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.
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 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 ] …………………………………………………………………….
Thank you for being part of this group. We hope you will enjoy it and we very much appreciate your commitment to it.