Best practice in Patient and Public Involvement and Engagement (PPIE)

We have adopted the NIHR’s UK Standards for Public Involvement in Research set of values and principles to guide our PPIE in research. The Standards are a description of what good patient and public involvement looks like and are designed to support self-reflection and learning. Reflective questions accompany each Standard to encourage users to think about their patient and public involvement plans and actions.

The standards cover six important ‘values based’ areas:

1. Inclusive Opportunities: patient and public involvement partnerships are accessible and include a range of people and groups, as informed by community and research needs.
2. Working Together: work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships.
3. Support and Learning: offer and promote support and learning opportunities that build confidence and skills for patient and public involvement in research.
4. Communications: use plain language for well-timed and relevant communications, as part of involvement plans and activities.
5. Impact: seek improvement by identifying and sharing the difference that public involvement makes to research
6. Governance: involve patients and the public in research management, regulation, leadership and decision making.

Learn more about the UK Standards for Public Involvement.

Consider whether face-to-face, online, or a combination of the two work best for your research project, and your patient and public representatives.

Be flexible about where you hold meetings:

• Explore opportunities for meeting people in their own environment, for e.g., by attending a regular meeting of a charity organisation or patient group.
• Consider venues that are on neutral ground – venues such as hospitals or local authority departments might be associated with difficult experiences.

Be flexible about when you hold meetings and adapt the timing and format to fit the needs of the people you wish to involve:

• Those who are working, have young children or who are carers might need to meet outside office hours.
• It is often better to plan for a mid-morning or early afternoon start to the meeting – this makes it easier for people if they have to travel some distance or if they need additional time in the mornings because of their disability or health condition.

Inclusion considerations:

• In some situations, you might need to offer overnight accommodation, in which case check if the person has any special requirements for an overnight stay.
• Make sure meeting places and facilities are accessible to all those attending, for example if you are inviting a wheelchair user to join your committee, meet in an accessible meeting room with parking nearby and fully accessible facilities.
• Ask people if they have any special dietary requirements or allergies and let them know what refreshments you will be providing.
• Be mindful of practical matters such as microphones and hearing loops for people with hearing impairments or large print for people with visual impairments.
• Think about whether you will need interpreters or sign language.
• Provide clear information about the meeting, timings and directions for getting to the venue well in advance and in a relevant format.
• Ask people if they require information posted to them or if they would like to receive it by email.
• Children under 16 years should be accompanied by an adult.

Virtual tools:

• Keep it simple - use easy software and tools.
• Offer instructions to people pre meeting as some may need to familiarise themselves with Zoom.
  • Read more about using Zoom for a virtual PPI meeting.
• Provide technical support before and during the meeting.
• Promote the opportunity widely - virtual meetings give you the opportunity to involve people not usually involved in research.
• Adjust the agenda accordingly - take into consideration more frequent screen breaks.
• Have a backup plan if technology fails.
• Use the waiting room function and only admit people whose identity you know; ask people to identify themselves if you are unsure.
• Disable all Chat function, only allow Chair and Co-chair to use private Chat.
• Make attendees aware of needing to join from a quiet venue if possible and have camera off if they think their background setting is not appropriate (room is one used by a shared household/ attendee is in transit)
  • Children under 16 years should be accompanied by an adult.

Read more support on NIHR'S School for Primary Care Research website.

In person and online:

• Ensure you have enough staff members to support the meeting or event, including a note taker.
• Send agenda and any documents at least 5 days in advance.
• Offer a pre-meeting or telephone discussion for people to discuss the agenda and papers.
• For in person meetings, provide name badges in a large clear text font. For online meetings ask people to type their names.
• If recording the meeting, you will need to get permission of all attending and only use audio recordings. Delete this recording once notes are taken.
• Ask people to introduce themselves at the beginning of the meeting. (Use an icebreaker)
• Agree ground rules for how you will conduct a meeting, so everybody has an equal opportunity to contribute and agree to mutual respect and respecting differences of opinion.
• For PPI Steering Committees consider developing terms of reference and/or ground rules for the meeting so that those attending know the responsibilities.
• Make sure that everybody has an equal voice on the group.
• Encourage the use of clear language, explain jargon and acronyms.
• Ask the Chair to regularly check that people understand the language used and the content of the meeting.
• Plan for frequent breaks as people might need to take medication or find sitting for long periods difficult.
• For face-to-face meetings, see if it is possible to have a spare room to allocate as a quiet room for those who might need to take some time out of the meeting. Ensure a breakout room is available for online meetings and a member of staff allocated to support if needed.
• Consider different ways of conducting meetings, such as time in small group sessions (breakout rooms online) to allow people the opportunity to contribute in different ways.
• Create a mentor or buddy system to support people you are involving on an ongoing basis.
• Keep to time!
• Plan and cost a PPI budget for your meeting(s).

In person and online:

• Share a write up of the event, including any recommendations or outcomes.
• Do not use people’s names in report writing.
• Ask for permission for any quotes to be used.
• Provide feedback on any recommendations or outcomes.
• Allow sufficient time between meetings for people to consult with their peers or their organisations if they wish to do so.
• Ask for feedback from PPI representatives involved in the meeting and if they have any suggestions for improvement for future meetings.