Embedded Files
1.Planning and recruiting to the opportunity
Please allow at least 2-4 months (minimum) for the completion of the recruitment process. This will ensure that you have the right person, at the right time, for the right opportunity.
Consider why and how you would like to involve the public
It is important to consider at the earliest stage why you would like to involve a member of the public in your work. Here are examples of how members of the public might get involved in research:
As members of a project advisory or steering group for your programme of work
As a public representative within a national programme board or other working groups
Commenting on and developing patient information, public-facing sections of websites or other public-facing materials
Advising on strategic documents and the direction of organisational plans from a public perspective
Taking part in a focus group to share their lived experience and advise how to ensure your programme of work reflects the needs and aspirations of people with this experience
Supporting you to share public-facing messaging and national campaigns
Develop a role description
Before you can begin to recruit members of the public for your activity, you will need to create a role description. This will outline simply and clearly:
What the activity is;
When it is;
What the requirements of the public partner will be;
The level of commitment (including time) needed;
Arrangements for any payment and ongoing support;
Expected output from the activity.
Writing a role description increases transparency, and is the first step to building a trusting and accountable relationship with the public partner. It also helps to manage expectations from both sides at the outset.
A template role description (example) is provided for you to use and adapt.
Where to find people
People in Research is a NIHR platform managed by CED and used to advertise involvement opportunities for the public. Users will respond to adverts directly and here you will find a variety of people with different levels of PPIE experience.
NIHR Infrastructure If you require members of the public with very specific lived experiences or particular health conditions, you are advised to contact The National Specialty Lead from the Medical Directorate. The LCRNs each have a PPI Lead who manages a range of regional involvement programmes; you can publicise your activities to the LCRNs through the RDN CC PPIE team.
Charity partners and stakeholders with experience working with the public with a specific research interest or experience can often assist you with recruitment. Contact the National Specialty Lead or Stakeholder Engagement Manager of your department for more information.
NIHR infrastructure organisations such as Biomedical Research Centres (BRCs) and Applied Research Collaborations (ARCs) have a range of condition-focused public involvement groups.
The RDNCC PPIE Team can help you recruit Research Champions or strategic PPIE representatives. Please contact the RDNCC PPIE team to discuss your needs.
Sharing the opportunity
It is highly advised that you undertake a recruitment and selection process for members of the public asked to undertake strategic-level activities. The process should include:
Open advertisement;
A shortlisting and informal interview stage with assessment criteria;
Induction and onboarding process for the successful applicants;
Co-creation of ways of working agreement and Terms of Reference (where you are establishing a public advisory group);
Use of confidentiality and conflict of interest policies and agreements if required.
The RDNCC PPIE team has developed a Standard Operating Procedure (SOP) for the involvement of the public in strategic groups within RDNCC that can be used as a guidance or reference document.
We advise to not use a 'first-come-first-served' basis or solely reach out to 'pre-existing contacts'. This method reduces diversity and opportunity amongst public partners, however, if you are unsure about this, please feel free to discuss this with the RDNCC PPIE Team.
2. Onboarding
Support
Public partners, although experienced, will need support to fulfil their role. This includes:
Admin support to organise payments, travel, accommodation and papers for meetings/events;
A point of contact for questions, technical queries (if online) and support before, during and after meetings;
A mentor within the project team to help them understand their role and responsibilities;
An induction programme to ensure they have all the knowledge they need to contribute to discussions meaningfully;
An assessment of accessibility needs to allow them to contribute fully;
Assessment of content - Is it potentially triggering or upsetting for the participant?
Some content in user testing or larger consultations may involve sensitive topics and need special consideration before planning the activity. Many public partners will have personal experiences of many of the things we ask them about and may have lots of emotions attached to words/scenarios/disease types. Some questions you might want to consider before planning your activity are:
Would it be considered sensitive outside of the context of your work?
Does the topic ask about private issues that could be stressful? e.g. marriage, death, illness?
Do any of the questions involve individuals revealing information that could be seen to be stigmatizing? e.g. gender
If you find that the content is sensitive, then you should consider ongoing support for participants and provide them with signposting information if required.
It is advised that when public partners are part of a meeting, they are allocated time on the agenda to present their recent activities or discuss any issues with the group. When a new public partner joins a strategic group, the Chair is also advised to introduce the individual to everyone in attendance and offer them the chance to provide an introduction to themselves/their background if they wish to do so.
Conflicts of interest
Experienced public partners may hold a variety of paid or voluntary roles, across a number of organisations (e.g. steering groups, funding panels, as a peer reviewer) at the same time. Therefore, it is prudent to ask new public partners about their potential conflicts of interest. It is advised to keep this list updated annually and include any/all active roles from the past 3 years.
Conflicts can be managed discreetly and sensitively and do not stop someone from taking part. Measures such as asking them to not participate in certain discussions, or votes may be feasible.
Responsibility and level of involvement: As representatives on a programme board/ strategic level meeting
Public partners need to have a clear understanding of their level of responsibility when undertaking strategic work. It is important to define:
Will the Public Partner have equal voting rights or decision-making powers?
Are they counted for quorate?
Are they expected to produce an output or undertake any work outside of the group?
What can the Public Partners influence?
How will their input be recorded and results/impact fed back to them?
Responsibility and level of involvement: Public Advisory Group
If you plan to establish an advisory group of members of the public you will need to ensure you have the following in place to ensure members feel valued and respected within their role:
Agreed and co-designed Terms of Reference (this helps strategic groups to understand the purpose, role and remit of the group.)
Ways of working agreement
A public partner chairperson
An induction, onboarding and support programme
It is important to define:
How will your advisory group interface with your decision-making/ wider governance structures
Are they expected to produce an output or undertake any work outside of the group?
What can the Public Partners influence?
How regularly and when will they meet and when will the membership be reviewed?
How will their input be recorded and results/impact fed back to them?
Accessibility
You will need to consider if public partners will have any additional support or accessibility needs to allow them to contribute or attend an activity. We have provided a few template examples and information below to assist you:
Practical checklist for public engagement activities (UCL - content not managed by NIHR)
How to run accessible, inclusive hybrid events using Zoom, Teams and more
Being inclusive in public involvement in health and care research (NIHR guidance )
3. Follow-up
Thank you
Always follow up an event or activity with a thank you the next working day. This is the minimum standard of good practice for PPIE and it is something that if not done, can compromise future engagement and lead to unintended offence.
It is vitally important to show public partners that you appreciate and value their contributions. If you can, provide further information on any related follow-up activity where appropriate to do so. If their contribution has led to a change, improvement or even if there has been no outcome, it is important to keep public partners informed and engaged.
De-brief meeting
It is advised that you organise a debrief or follow-up meeting following the activity or event. Ideally with the main point of contact that has been communicating with the public partner.
The meeting should cover:
A reflection on the activity, the outcomes and what comes next;
An assessment of the public partner and their well-being. If the content of the activity is sensitive, then you may need to consider external support or signposting;
A reflection on the recruitment process, onboarding and follow-up. This can also be in the form of a survey or questionnaire.
The RDNCC PPIE Team has a standard survey that can be used as a template for public partners, capturing insights about their experience.
Outputs
Outputs from PPIE activities can take many forms. Consider, along with your public partners, what would work best for your activity/event. Some examples could include:
Writing a plain language summary of the activity. Some examples of previous summaries can be found here (Covid Connect)
Co-produce formal meeting minutes (example)
You will need consent to use images of public partners within reports. You can use the NIHR standard consent form.
We recommend that you always give public partners a chance to review any outputs and reflect on their contributions before you finalise their comments or any reports.
Payments and expenses
Please follow the guidance on public partner payments and expenses.
Further Background reading for public Partners at the strategic level
Communicating research evidence to boards in health and care organisations: A scoping study
Advancing Health Technology Assessment Methods that Support Health Equity
Code of Conduct for Board and Committee Members (accessible version)
Innovating public engagement and patient involvement through strategic collaboration and practice.
PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes
4. Specialty information for specific conditions or groups
Dementia Enquirers: Gold standard for involving people with dementia
Page updated
Report abuse