Stage 4:
Involving public members
Why it’s important
The day of a public involvement event is an exciting time - it's your chance to meet patients and public members, build relationships, and learn from their lived experience. It's important to create a warm, respectful, and inclusive environment so that public members feel comfortable sharing their thoughts. We also need to make sure we're ensuring the wellbeing of the people we involve. Below, you'll find tips on how to make sure your public partners feel safe and supported throughout the experience and leave feeling heard and valued.
When defining what representative involvement looks like for your project, here are some characteristics to consider. Please note that this list is not exhaustive, and that the characteristics you consider will depend on your research topic. For example, if you're studying maternal safety, you may want diversity in the methods of delivery represented in your public involvement.
Common barriers
If you haven't engaged with patients and public members before, you may not feel confident in your facilitation skills. This can be particularly true when working with groups that are more vulnerable to harm and exploitation. However, we don't want this to prevent us from involving these groups and uplifting their voices in research. Check out the video below to hear public members from vulnerable groups speak about their experiences of being involved in research.
PLACEHOLDER:
Video co-produced with public members from groups more vulnerable to harm and exploitation through research on why it’s important to have the opportunity to get involved in research and what helps make them feel safe getting involved
Before the event
Ask for preferences when finding a date and time, and be aware of any relevant holidays and/or responsibilities (e.g. work, school pickup) for the groups you're working with.
Ask about access needs prior to the event, and give examples of what these may be (e.g. Braille or large print, hearing loops, British sign language interpreter, wheelchair access, private room for prayer).
If you plan to have food at your activity, ask about any dietary requirements prior to the event.
If meeting in person, provide clear directions to the venue e.g. map, transport links). Consider the accessibility (e.g. can toilets be easily reached) and suitability of the venue (e.g. a hospital setting could be triggering if your research focuses on patient safety incidents), and use community venues where possible.
If meeting online, provide clear instructions for joining the meeting and offer a test run ahead of the meeting. Zoom tends to be preferred and more accessible than Microsoft Teams.
Help attendees understand what to expect, including how many people will be there and what topics will be covered. You may want to send an agenda in advance if relevant.
Tips for facilitation
Have tea, coffee, and snacks available to help build a friendly environment. If your meeting is taking place around lunch time, provide lunch - this can be a great opportunity to build relationships and have informal chats.
Build trust and relationships through relaxed introductions.
Be aware of power dynamics (e.g. where people sit, who speaks first, who speaks most).
Allow people to contribute anonymously (e.g. putting thoughts on post-its), in different sized groups, and in different ways (e.g. through speaking, writing, or drawing).
Validate people's experiences and recollections (e.g. taking notes, providing verbal affirmations, using non-verbal cues such as nodding).
If it's your first time meeting with a group, start the discussion with a broad open-ended question that allows people to share their story. Leave plenty of time for this, and be prepared for it to take the whole meeting if need be. Most people come with certain thoughts and experiences they want to share, so making space for this at the start allows them to focus on more specific questions later on.
Clearly define what is in and out of scope for the discussion, but don't be afraid to go with the energy of the group, even if this means deviating from the agenda - this should be a space for public members to share their stories and knowledge with each other as much as it is a space for you to learn from them.
“To create a welcoming environment for public involvement, I think it’s important that everyone feels valued, respected, and comfortable sharing their views. Good communication and a supportive atmosphere make all the difference.”
- Asmahan Al Nidawi, public member
Safeguarding public members
Ensure all staff have completed your institution's safeguarding training.
When discussing a sensitive topic, have a Mental Health First Aider present in the meeting.
Create a safe environment by including social time before and after meetings.
Co-develop principles with the group so that everyone feels comfortable (e.g. keeping personal stories confidential, never questioning others' lived experiences).
Be clear that public members may take a break or leave the session at any time if they feel unwell or emotional, and suggest another way they can be involved (e.g. an individual chat after or reviewing documents offline).
Provide an independent contact outside of the project team who public members can raise concerns with anonymously.
If discussing a potentially emotive topic, encourage public members to take 30 minutes after the session to do something relaxing or debrief with a trusted friend of family member.
Avoid Fridays for potentially emotional or upsetting discussions so that public members can contact you the following day if they want to debrief or need further support.
Signpost public members to relevant support and wellbeing resources.
Remember that safeguarding is just as important for online meetings, and you should consider how you will look out for signs of distress online.
Safeguarding researchers
Never have in-person meetings with public members alone.
Do not share your personal phone number with public members.
Have a pre-meeting before potentially difficult discussions to share concerns and support one another.
Plan dedicated time and space for decompression and reflection after difficult discussions.
Do not schedule too many intense meetings in one day, and leave time for breaks in between. Use those breaks for self care practices, an informal chat with a trusted friend of family member, or a debrief session with the project team or a Mental Health First Aider.
Signpost staff members to your institution's mental health support resources and relevant external resources.
Know where your responsibilities for safeguarding begin and end, maintain healthy boundaries with public members, and signpost public members to professional support where needed.
After the event
Thank public members for their time and insights.
Ask attendees to share any additional reflections/feedback (e.g. anonymous evaluation form, email, phone call).
Share any payment forms or vouchers. Give public members a realistic estimate of when they can expect to be paid.
Send a summary shortly after the event to acknowledge what you have learnt from their insights and what has changed in the project as a result (e.g. you said, we did).
Tell attendees about next steps, including how their insights will be used and when you will be able to share any findings with them.
Frequently asked questions
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It's helpful to establish ground rules at the start of a meeting to try and prevent this (e.g. listen more than you talk, share the time). If someone is still dominating the conversation, don't be afraid to politely interrupt and ask them to give others a chance to share. You can also offer to follow up with them individually after the meeting if there are things they still want to discuss. You can use the one-to-one chat with them to allow time for self-reflection (e.g. Who did you feel spoke the most during today's meeting? How did this impact the discussion?) and discuss strategies for ensuring everyone is able to get involved (e.g. waiting until at least one other person has spoken before sharing your thoughts; setting time limits for responses).
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Offering multiple methods for contributing to the conversation (e.g. writing in the chat) can be helpful for people who don't feel comfortable speaking in front of large groups. Also, making clear that everyone's lived experience is valued and reassuring the group that no research knowledge is required can help people feel more confident sharing their thoughts. If someone is still being quiet, you can ask them a question directly, although you shouldn't push them to give an answer if they don't have one. You can follow up with them after the meeting to ask if there's anything they didn't have a chance to share and to discuss strategies for ensuring they feel comfortable getting involved (e.g. giving the group a few minutes to think silently before asking for responses).
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Public involvement payments (including vouchers) are classed as income and may impact a person’s benefit claim. It is the responsibility of the individual to declare any payments/vouchers to HMRC. Reimbursed expenses are not counted as income.
People receiving welfare benefits should seek expert advice and/or permission from the relevant authority (e.g. JobCentre Plus in England) before agreeing to any public involvement activities. Based on the expert advice received, public members may choose to accept payment, request a lower amount of payment, or decline payment altogether.
You can provide public members with a letter to help JobCentre Plus staff understand that involvement is different from employment. NIHR provides a template letter on their website. Public members getting involved in NIHR-funded research projects can also access the free, confidential, and personalised Benefits Advice Service coordinated by the Bedford Citizens Advice Bureau. Information for how to access this service can be found in Section 8 of the NIHR Payment guidance for members of the public considering involvement in research.
For more information, please read the NIHR guidance linked above.