Public Involvement Resource Hub
Our Public Involvement Resource Hub has been specifically developed for Imperial College researchers funded by the NIHR Imperial Biomedical Research Centre (BRC), but the content is open and accessible to all.
This main page is structured around key steps in the public involvement process, but also provides links to further resources, sites and information that you may find useful.
Our downloadable Rough Guide to Public Involvement (pdf) builds on the content from this site with more practical public involvement guidance. And information about upcoming training sessions can be found on our Public Involvement Training page, along with links to other training resources for both researchers and members of the public.
What do we mean by "public involvement" in research?
People are often quite familiar with the term public engagement but are less sure about how this differs from involvement in research, co-production or participation. The boxes below outline how these four terms are defined by the National Institute for Health Research and the types of activities they may include.
As an additional note, when we refer to 'the public' this includes patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use these services.
Key defintions
Key definitons 2
Public Participation
Public participation is where patients or members of the public are participants in or the subjects of research that is done 'to', 'about' or 'for' them.
Examples of participation are people being recruited to a clinical trial, completing a questionnaire or participating in a focus group as part of a research study.
An overall view of Public Involvement
Public involvement in research doesn't need to be complicated. The key thing to remember is that public involvement is a mechanism that fosters communication with people who have lived experience of specific health issues (i.e. patients, carers, family members etc), and ensures their voice and insight helps inform translational research.
In its most basic terms, the process looks like this:
With this in mind, the next sections help with identifying opportunities in your research (i.e. when and why to involve), deciding who to involve, and evaluating and reporting the outcome. You may also want to review our Rough Guide to Public Involvement (pdf) and the Further Public Involvement Resources section at the end of this page, for more tips and guidance, including how to fund your activities and how to support and reward those you involve.
Why involve the public
The NIHR provide a useful overview of why researchers should involve members of the public in their research, with a supporting quote from Professor Dame Sally Davies...
No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well. (Foreword in Staley, 2009)"
Professor Dame Sally Davies
Chief Medical Officer
Within the research stage pages above, we've also outlined some other reported benefits of involving the public at each of the stages.
However, it's important you understand the unique challenges of your own project. Think carefully about your reasons for involving patients or the public - What are you hoping to achieve? What challenge or activity could public or patient insight help with? What difference or impact do you want it to make? This will not only help focus your public involvement plan and guide your choice of approach, but will enable you to evaluate the process at the end too.
Find out why other Imperial researchers did public involvement, by reading their case studies on our blog.
Deciding who to involve and how to find and recruit them
Who you choose to involve will depend on:
- The population on which your research is based, e.g. specific patient groups or public health; and
- The purpose of your involvement plans, i.e. what you want to achieve and what people will be asked to do
Ideally you want to talk with a range of people, from a variety of backgrounds and over a period of time, who reflect the population the research is likely to impact. Remember, the greater the diversity of people you involve, the richer the opinions you will get in return. But there's no harm in starting small - maybe talk to one person to get their thoughts on your plan or project, and then find out from them who else you should talk to and what approach might work well.
No one person should be thought of as being confined to a specific group, but if you want to reach people with a certain type of insight, here are some of the broad groups you might want to reach:
Deciding who to involve
Experts by experience (e.g. patients and carers)
There are a number of ways to reach patients with lived experience of a specific condition or disease:
- Healthcare professionals – Do you work in the research field or know anyone who does? If you have a patient facing role, you are able to invite your patients to take part in public involvement in reserarch and this does not require ethics approval as it’s for public involvement rather than recruitment for research. If you dont have a patient facing role, will any colleagues assist you to connect to patients by putting up posters in an outpatient clinic?
- Third sector organisations and charities – these community groups will often have a large network of patient contacts, however you will need to establish a relationship with them early to build trust. Be aware that these organisations may have limited capacity and resources so please bear this in mind when you approach them.
- Your research team's website and/or Twitter handle – this could be an easy way to advertise opportunities; however, it’s best not to rely on this approach only, especially if you’re unsure whether a good proportion of the people you want to involve are active followers
In addition, carers of patients are also a very good source of condition-specific knowledge and should be included in condition-specific research issues.
General public (also known as 'lay partners/contributors')
This means people who contribute a non-clinical/non-research point of view. They may or may not also have a health condition. It’s good to remember that members of the public are often able to offer advice that’s relevant and translatable to condition-specific research for example, as someone who may be at risk of a condition or could potentially be diagnosed with a condition.
However, it can be more difficult to find general members of the public to involve because there is no standard approach to recruit them. Personal connections, VOICE, social media, posters in public areas and public engagement events may be your best option.
Community groups
Researchers should make efforts to establish relationships with community groups within their research population as early as possible rather than approaching them when their input is required into a funding application. Establishing rappore and building trust is vital and takes time. This is especially relevant because people recruited into health and social care research often do not represent those most in need. Those who are under-served often have demographic and socioeconomic factors that increase the health inequalities they experience. Due to their underrepresentation in research participation and public involvement, findings from the research may not apply to all groups of patients. This in turn limits treatment options for under-served people, increases health disparities and perpetuates the cycle of inequalities.
The Community Champions programme brings local people and services together to improve health and wellbeing and to reduce inequalities. It is delivered by the Tri-Borough Public Health Service, based at Westminster City Council, in partnership with local authorities, voluntary sector organisations, residents and volunteers, thereby building on the skills and knowledge of local communities.
There are also consumer health groups such as Healthwatch. Every local authority of the UK has a Healthwatch (funded by their council). Some are membership organisations that distribute opportunities to their members. The Healthwatch covering the Imperial College area is Healthwatch Central West London.
Experience of public involvement
Approaching people who have already indicated they’re interested in getting involved with science and research can of course make the recruitment process much easier. Commitment tends to be high and they are often more informed about what is expected of them. However, for this reason it can also be more difficult to ensure diversity. Some people can also become so familiar with research processes that the true perspective of a ‘lay person’ risks being lost.
For many projects though, this will be a perfectly appropriate approach. If this is the case, here are two platforms that you may want to use:
- VOICE - VOICE is an online platform that aims to capture the public's vast experience, ideas, opinions and expectations about the research, innovations and policies affecting their lives. VOICE has over 10,000 members of the public of all ages and backgrounds, to become actively involved in contributing their insights and perspectives. Established by Newcastle University, Imperial College London joined as the first external collaborator in January 2019 giving Imperial College researchers the ability to engage in discussions with members and post opportunities for engagement, involvement and some participation (not trials) in their research.
- People in Research - This NIHR affiliated website allows researchers to advertise opportunities for involvement to the public. Its reach is UK-wide but tends to be used by members of the public who are more experienced in public involvement
Resources for recruitment
Resources and templates for recruiting public members
- Public Involvement Advisory-Steering Group Flyer Template /Public Involvement Workshop-Event Flyer Template - These templates can be used to advertise your public involvement opportunity. The template gives you an idea of where to start, but should be tailored for the specific groups you want to involve. It needs to be clear and simple and give your target audience all the relevant information.
- Public involvement registration-expression of interest form – To be used when recruiting people to be involved - it can be used as a word document form, or can be made into a Qualtrics online form. It helps with capturing expressions of interest and assessing diversity, public involvement experience, accommodating special requirements and making arrangements for public involvement activities. All content is confidential and must be handled accordingly and securely. Please ensure you only collect information you need.
- Plain English project summary (word) – This document helps you map out your plans and introduce potential patients or members of the public to your project so you can introduce your project clearly and concisely to members of the public.
- Involvement opportunity email-mailout tempate - A short template with headings to organise your opportunity text into an accessible email format which can then be sent to public networks.
- GDPR Privacy Notice Template Public Involvement (March 2022)- This privacy notice has been developed pursuant to the General Data Protection Regulations to cover most situations where members of the public have consented to their details being retained to facilitate public involvement and engagement activities and opportunities. You will still need to ensure people provide 'opt-in' consent to their details being retained for these purposes
- Role description template (word) -This can be included on its own or as an Annex to a Terms of Reference document (if you use one) where the public involvement is ongoing or long-term. NB. While it may be helpful to provide a draft role description during recruitment to give people an overview of the proposed role and responsibilities, the final document should be co-produced with the people you involve ensuring they understand it and are happy with the responsibilities assigned to them
- Letter of appointment - public member (word) - You can use this Letter template to formally offer a public position on an advisory or steering group.
Public involvement platforms and public networks
VOICE - VOICE is an online platform that aims to capture the public's vast experience, ideas, opinions and expectations about the research, innovations and policies affecting their lives. VOICE has over 10,000 members of the public of all ages and backgrounds, to become actively involved in contributing their insights and perspectives. Established by Newcastle University, Imperial College London joined as the first external collaborator in January 2019 giving Imperial College researchers the ability to engage in discussions with members and post opportunities for engagement, involvement and some participation (not trials) in their research. To promote your opportunity on VOICE please read the VOICE guidance and send your completed VOICE Opportunity Submission Request Form (word) to voice@imperial.ac.uk
Imperial Young Persons' Advisory Network - The Young Persons' Advisory Network is available to support Imperial researchers who seek the input of young people into their research project. Once you have a public involvement proposal that you would like to involve the YPAN in, please complete the YPAN Submission Request Form and email it back either to publicinvolvement@imperial.ac.uk
People in Research - This NIHR affiliated website allows researchers to advertise opportunities for involvement to the public. Its reach is UK-wide but tends to be used by members of the public who are more experienced in public involvemen
Addressing inclusivity and underrepresentation in research
People involved in health and social care research often do not represent those most in need. Those who are under-served often have demographic and socioeconomic factors that increase the health inequalities they experience.
Improving the openness and inclusivity of research (both participation and involvement) will be one of the key ways to counteract health inequalities in health services and research. As is not possible for researchers to representatively sample their target population for public involvement purposes, inclusion of people from diverse backgrounds is what’s key. Remember that no one person can ever fully represent a disease area or group of people, but they can contribute a valuable non-research perspective. This is why we call members of the public who are involved in research “public contributors” rather than “public representatives” as no one can represent all of the public.
Proactive efforts should be made to involve as diverse a range of relevant communities, backgrounds and perspectives as possible in both research participation and involvement in research. This will often involve taking your research to people and communities and a place where they feel comfortable, rather than expecting them to come to you at a venue of your choice.
Addressing underrepresentation in research
Resources for addressing underrepresentation in public involvement
Resources for addressing underrepresentation in research participation
Resources from the NIHR INCLUDE Project:
- Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project - examples of good practice and resources to guide teams seeking to engage with, and improve inclusion of, under-served groups in health research.
- INCLUDE Ethnicity Framework - aims to help research trial teams think carefully about which ethnic groups should be included in their trial for its results to be widely applicable, and what challenges there may be to making this possible.
- INCLUDE webpage – updated with relevant training and resources
- "Ensuring that COVID-19 research is inclusive: guidance from the NIHR INCLUDE project" (https://bmjopen.bmj.com/content/10/11/e043634)
Resources from the Centre for Black and Minority Ethnic Health:
- Increasing participation of Black Asian and Minority Ethnic (BAME) groups in health and social care research: a toolkit and associated checklist - Applied Research Collaborative East Midlands
- Equality Impact Assessment (EqIA) Toolkit - designed to ensure that equality considerations apply to all stages of the research process
Resources from the National Institute for Health Research:
- Equality, Diversity and Inclusion Toolkit: this resource has been developed by the NIHR Research Design Service to support researchers to better understand how to embed EDI in research design.
Training:
- NIHR INCLUDE online course - accessible online through NIHR Learn. For new users, you will be prompted to register at the login page. Upon completion of the registration form, you will then have access to the course
Other resources
For more guidance on finding the deciding who to involve and how to find and recruit them, read our Rough Guide to Public Involvement (pdf)or the case studies on our blog.
When to involve people in your research
Public involvement can provide benefits at all stages of the research cycle. The NIHR, divides the research cycle into seven stages: 1) identifying the research focus, 2) funding or commissioning the work, 3) designing and managing the study, 4) undertaking and analysing your work, 5) disseminating the findings, 6) implementing change, and 7) evaluating impact. Some people may be able to involve patients or the public at every stage of this cycle, while for other projects involvement may be limited to one or two stages.
To find an opportunity for public involvement in your work, look at the stages below and select the one you're about to start, or you know could be particularly challenging:
3 colour block - stage 1 2 3
Stages of research cycle
Involving the public in basic or health data research
There is no ‘one size fits all’ approach to involving people. It will depend on the needs of the people you are involving, the type of project you are undertaking, the time and resources you have available and what you want to achieve. To help actively involve the public across all types of research, guidance (listed below) has been developed for researchers aiming to undertake public involvement in basic and lab-based research projects as well as health data research projects, which may require different approaches to involving the public compared to clinical or applied health research.
Resources for involving people in other types of research
Guidance for undertaking public involvement in lab-based or basic research
Guides for researchers
- A practical guide to patient and public involvement in lab-based research - developed by Parkinsons UK, Alzheimer's Society and UCLH Biomedical Research Centre. The document provides guidance on planning and undertaking public involvement in lab-based research as well as providing a number of case studies as examples.
- Patient and Public Involvement: A researchers guide - developed by Arthritis UK and includes a section on involving people in basic research.
Useful papers and articles
- Involving Patients in Pre-clinical Research (2018) - BMJ Open Science Blog
- Facilitating Patient and Public Involvement in basic and preclinical health research (2019)
- Involving People in Laboratory Based Research - A discussion paper from the UK Charities Shared Learning Group on Involvement.
- Transparency and Public Involvement in Animal Research (2016)
- Which Patient Takes Centre Stage? Placing Patient Voices in Animal Research (2019)
- Finding and engaging patients and the public to work collaboratively on an acute infection microbiology research public panel (2018)
Resources for involving the public in data access committees, health data and artificial intelligence research
- Navigating Digital Health: A guide to data and artificial intelligence in healthcare (2023)
- Imperial PERC Guidance on Involving the Public in Health Data Research (2022)
- NHSX, Involving people and communities in digital services
- Health Data Research UK (HDRUK), Building trust in data access through public
involvement in governance (July 2021)
For a summary of this content, download our Rough Guide to Public Involvement (pdf)
How to involve people in your research
Once you have identified an opportunity to involve people in your research, understand why you are asking people to help, and have considered who you would like to involve, you need to decide what approach to take.
Here is a list of the most common involvement methods, starting with the simplest:
- Listen/Talk to someone (patient/public) with experience of the research topic or issue, e.g. via patient support groups, social media, email, phone
- Run a survey or interview in a setting where your target audience may be found, e.g. clinic waiting rooms, patient support groups or online. Make sure you get permission from relevant staff beforehand though
- Organise a focus group
- Host an interactive workshop
- Establish a formal patient or public panel - this may be more relevant for large-scale projects where continuous and varied involvement can be adequately managed
Your approach can be as simple or creative as you want it to be, and doesn't need to be restricted to just one. But it must be clear what you want to get from the publics' involvement and also what they will gain in return. You should also consider how people will be kept informed about the outcome of their involvement, or even better how they could continue to be involved.
You don't need to have a full involvement plan mapped out straightaway. You may want to start off small and work it up iteratively after speaking to a variety of stakeholders (other researchers, healthcare workers, patients, members of the public, policy makers etc). The key is finding the approach that's most relevant and suitable to your project, budget, goals and the people you want to involve.
For more methodological inspiration and practical guidance, visit the Action Catalogue (an online decision support tool developed as part of the Engage2020 project), download our Rough Guide to Public Involvement (pdf) or read the case studies on our blog.
Resources and tools for involvement activities
Resources and tools for public involvement workshops, discussions and focus groups
Planning and undertaking workshops, discussions and focus groups
- Public Involvement Event Checklist- Use this as a guide to ensure you have thought about what you need to plan your even
- Workshop agenda template (word) – When holding a public involvement event, e.g. a workshop, it is good practice to have an agenda setting out the order of what will happen that gets circulated at least one week before your event. This assists in managing peoples' expectations and easing any concerns they may hav
- Template presentation slides for public involvement sessions (ppt) -Template slide set developed by PERC to help you structure your public involvement session. These are guidance only and can be adapted - however note that keeping slides to a minimum with limited text is preferred.
- Risk assessment - you should complete a risk assessment for each public involvement activity/event you undertake and have it signed off by your Imperial College Department Safety Officer - see the appropriate form under "Events and Festivals" here . This applies to online events as well.
- General Events Code of Conduct - April 2021 (pdf) - It is good practice to provide a code of conduct to attendees of events you are running so they know how you are expecting people to behaviour and what behaviour won't be tolerated. You can use this as a template if you wish to tailor it to your needs.
- Photo Consent Form May 2018 – We encourage you to take photos of your involvement activities as it helps with the promotion of your work afterwards, both online and in print. However, people must provide their consent for you to use their photo. This consent form has a very broad scope and therefore some people may not wish to sign it. If someone is happy for their photo to be used in more limited circumstances, we recommend that the form is amended by hand to say in which circumstances the person is happy for their photo to be used and have them sign this amended version
- Guidance on setting-up and running a Science Café- 2021, Cancer Research UK Imperial Centre
Feedback and evaluation of workshops, discussions and focus group
- General feedback form template (word) - This form allows you to collect general feedback on the structure of a public involvement workshop or event you host and highlight any issues that arised. However, it might also be possible to incorporate the questions into the public involvement event evaluation forms (see next section) to minimise the number of forms people are asked to complete
- Public involvement impact log for researchers - This template (adapted from People in Health West of England (PHWE) 's template) should be completed following each public involvement activity throughout the project to record key areas of input and discussion with the public and any associated impact (positive and negative) on the research, the research team and those involved. This is important in order to collect impact of your public involvement.
- Guidance on setting-up and running a Science Café
Useful external resources for virtual public involvement discussions:
Resources and tools for public advisory or steering groups
Setting up a public advisory or steering group
- Plain English project summary (word) – This document helps you map out your plans and introduce potential patients or members of the public to your project
- Skills and training review template (word)– Use this form once you’ve recruited people to your project to understand their current level of public involvement experience and identify any additional training needs
- Letter of appointment - public member (word) - You can use this Letter template to formally offer a public position on an advisory or steering group.
- Role description template (word) – This can be included on its own or as an Annex to a Terms of Reference document (if you use one) where the public involvement is ongoing or long-term. NB. This document should be co-produced with the people you involve to ensure they understand it and are happy with the responsibilities assigned to them
- Chairperson role description template (word) – If you have a public involvement panel or group that meets regularly, it is good practice to have a professional as well as a lay chairperson in order that these meetings are more collaborative. This role description gives some structure/guidance to the lay chairperson’s role in case it's required
- Terms of Reference – This document is useful when you have a group of people who will be involved in a project for longer than one or two meetings. It explains what is expected of them, how much they will be paid, how regularly the meetings will be and includes a paragraph on confidentiality. This document should be co-produced with the people you involve to ensure they understand it and are happy with the responsibilities assigned to the
- Ground Rules – Use this document if you are not using a Terms of Reference document in order to clearly share the behaviour you expect of those you involve. It will also allow you to hold people to account, if necessary. This document should be co-produced with the people you involve to ensure they understand it and are happy with the behaviour expected of them
- Confidentiality Agreement– This should be used if anything to be discussed with people is confidential and you are not using a Terms of Reference document, which already includes a confidentiality clause
Further training and guidance for researchers
- Public Involvement in Research (Coursera online course) - developed by the Imperial Patient Experience Research Centre this public involvement training is now available through an online course on the Coursera platform and is aimed at researchers but also suitable for patients and the public (citizens).
Further training and guidance for adivsory or steering group members
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NIHR Learning for Involvement Training and Resources - published 5 April 2021. These training and resource materials are suitable for researchers and members of the public, including an interactive course for new and experienced patient/public reviewers of health and social care research.
- NIHR Public Information Pack - How to get involved in NHS, public health and social care research (April 2021)
- EUPATI Open Classroom -Flexible and on demand e-learning platform providing courses in medicines research and development for patients, patient representatives and other stakeholders. If a learner wishes to take an assessment to test their learning, the fee to unlock an assessment is EUR 8 (incl. VAT) and they will receive a course certificate via email.
- European Patient Ambassador Programme course - The course is made up of eight modules, which will help you gain the information and skills you need to become a successful patient representative. You do not have to do the modules in the order they are presented. The individual modules can be done in any order you feel best suits your needs and interests.
Resources and tools for peer researchers
- Peer Research Training Resource - Developed by the Patient Experience Research Centre, this resource, is aimed at academics and public involvement practitioners who want to train people with lived experience to become co-researchers in qualitative/interview-based research studies.
- Useful materials for supporting peer researchers - Developed as a supplementary material to the Peer Research Training Resource (above), this package includes key documents used to support the involvement of peer researchers. It includes skills, experience and training reviews and guidance on using zoom for interviews.
- Plain English project summary (word) – This document helps you map out your plans and introduce potential patients or members of the public to your project
- Skills and training review template (word)– Use this form once you’ve recruited people to your project to understand their current level of public involvement experience and identify any additional training needs
- Letter of appointment - public member (word) - You can use this Letter template to formally offer a public position as part of the research team.
- Role description template (word) – This can be included on its own or as an Annex to a Terms of Reference document (if you use one) where the public involvement is ongoing or long-term. NB. This document should be co-produced with the people you involve to ensure they understand it and are happy with the responsibilities assigned to them
- Confidentiality Agreement– This should be used if anything to be discussed with people is confidential.
Useful external training & resources
-
NIHR Learning for Involvement Training and Resources - published 5 April 2021. These training and resource materials are suitable for researchers and members of the public, including an interactive course for new and experienced patient/public reviewers of health and social care research.
- EUPATI Open Classroom -Flexible and on demand e-learning platform providing courses in medicines research and development for patients, patient representatives and other stakeholders. If a learner wishes to take an assessment to test their learning, the fee to unlock an assessment is EUR 8 (incl. VAT) and they will receive a course certificate via email.
- European Patient Ambassador Programme course - The course is made up of eight modules, which will help you gain the information and skills you need to become a successful patient representative. You do not have to do the modules in the order they are presented. The individual modules can be done in any order you feel best suits your needs and interests.
- Research Methods: A Practical Guide to Peer and Community Research: Identify how to conduct your own research and develop your own ethical research project on this practical course (Futurelearn)
- Why Experience Matters - Qualitative Research (Futurelearn) - Explore the methods and tools qualitative researchers use to understand human behaviour and solve social problems. Suitable for general public audience.
- NIHR Public Information Pack - How to get involved in NHS, public health and social care research (April 2021)
- A research handbook for patient and public involvement researchers, produced by NIHR funded research programme, EQUIP
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INVOLVE’s plain English ‘jargon buster’ of research terminology
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Keele University ‘Glossary for Patient/Public Research Partners’ (downloadable)
Resources and tools for public co-applicants
- Plain English project summary (word) – This document helps you map out your plans and introduce potential patients or members of the public to your project
- Skills and training review template (word)– Use this form once you’ve recruited people to your project to understand their current level of public involvement experience and identify any additional training needs
- Letter of appointment - public member (word) - You can use this Letter template to formally offer a public position as part of the research team.
- Role description template (word) – This can be included on its own or as an Annex to a Terms of Reference document (if you use one) where the public involvement is ongoing or long-term. NB. This document should be co-produced with the people you involve to ensure they understand it and are happy with the responsibilities assigned to them
- Confidentiality Agreement– This should be used if anything to be discussed with people is confidential.
Useful external training & resources
- NIHR Public Co-applicants in Research - guidance on roles and responsibilities - this guidance is for: researchers wanting to include public co-applicants in a study; public contributors wanting to become a co-applicant; research staff who coordinate public involvement activities or advise on funding applications; and those working in or with research organisations to review or process research application
- NIHR Learning for Involvement Training and Resources - published 5 April 2021. These training and resource materials are suitable for researchers and members of the public, including an interactive course for new and experienced patient/public reviewers of health and social care research
- EUPATI Open Classroom -Flexible and on demand e-learning platform providing courses in medicines research and development for patients, patient representatives and other stakeholders. If a learner wishes to take an assessment to test their learning, the fee to unlock an assessment is EUR 8 (incl. VAT) and they will receive a course certificate via email.
- European Patient Ambassador Programme course - The course is made up of eight modules, which will help you gain the information and skills you need to become a successful patient representative. You do not have to do the modules in the order they are presented. The individual modules can be done in any order you feel best suits your needs and interests
- How to involve the public as research co-applicants (East Midlands Academic Health Science Network) - amended 31 December 2020. This paper pools what they knew about how to make arrangements so that public co-applicants are appropriately engaged
Resources for public co-authors
How to involve the public as co-authors (updated April 2022) - East Midlands Academic Health Science Network
Rethinking Diversity in Publishing (2020) - Dr Anamik Saha and Dr Sandra van Len
Resources for virtual public involvement activities
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NIHR - Virtual Patient and Public Involvement: A guide to video calling (2020)
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NIHR School for Primary Care Research - How do I hold a PPI meeting using virtual tools? (2020)
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NIHR School for Primary Care Research - How to use zoom for a virtual meeting? (June 2020)
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Inclusion Insights - Holding accessible and inclusive virtual meetings (pdf)
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AbilityNet - How to host an accessible online meeting (June 2020)
Budgeting for involvement and paying public members
Resources for budgeting public involvement and paying public members
Budgeting for public involvement
- Payment for Public Involvement in Health and Care Research: A guide for organisations on determining the most appropriate payment approach (June 2022) - We recommend you use this guidance to support you in determining appropriate payment methods for public contributors.
- NIHR Centre for Engagement and Dissemination Policy on recognition payments for public contributors (July 2020) - We recommend you use this guidance, developed by NIHR Centre for Engagement and Dissemination, to cost how much you will reward people (depending on their level of involvement), what you will reimburse (e.g. travel, accommodation, childcare etc) and when.
- NIHR Payment guidance for researchers and professionals for public involvement - published 5 April 2021. This guidance document refers to good practice for payment and recognition of members of the public in public involvement and includes guidance on those in receipt of welfare benefits. It also refers to the NIHR Centre for Engagement and Dissemination Payment policy above.
- NIHR Payment Guidance for Members of the Public considering involvement in Research - published 5 April 2021. This guide is for patients, carers and members of the public thinking about getting actively involved in research (see section 1 of the document for definitions of these terms) and being offered expenses and/or payment for involvement. It offers answers to some frequently asked questions and suggests where people might get advice about their particular circumstances including those in receipt of welfare benefits.
Paying members of the public
- Non-payroll fees (NPF) form (link, for Imperial staff only) – This link takes you to Imperial's NPF procedures and form page. The NPF form is used when the person being paid for their involvement earns less than £1,000 per year from Imperial College sources, e.g. people you involve may be taking part in other public involvement activities connected to Imperial College and they will have to guide you as to whether it is appropriate for them to be using a NPF form or not
- Public Contributor Invoice Template (word) (for use by Imperial staff only) - If a public partner has been, or will be, paid more than £1,000 in one calendar year, they will need to submit an invoice with details of the activity they are claiming for, their time spent and amount claimed. They will be subject to a consultancy contract treated as a supplier and will need to be approved as such on the finance system in advance of submission of an invoice (which will need to include a PO number). Speak to your local finance team member for more details
- Imperial College Expense Claim Forms (link, for Imperial staff only) – This link will take you to Imperial's Expenses page where you can access more information about expense procedures, including expense claim forms. Patients and members of the public should use this form to claim their permitted ‘out of pocket’ expenses, e.g. travel, accommodation etc. The finance person in your team should process this form.
Resources and tools for writing grant applications
Guidance for public involvement in funding applications
Public involvement for grant applications - guidance developed by the Patient Experience Research Centre for researchers completing a PPIE section for Stage 1 and 2 NIHR grants.
External resources & guidance
- The RDS London also provides a bursary scheme that awards small amounts of funding to enable public involvement activities during the development of grant applications for health and social care research. Please note that applications for this bursary should be submitted well in advance of your funding deadline.
Evaluating the impact of your Public Involvement work
This means documenting and understanding the impact that involving people in your research has had on both your research and the people involved (researchers and patients/public). But don't leave this step to the end of your public involvement. It requires some planning and thinking about BEFORE you start your public involvement activities too. How will you know if your involvement activity was successful? What mechanism or tool will you use to measure its impact on your research and those involved? Where possible, the people you hope to involve in your research, should be involved in this step too.
As a minimum, we recommend keeping minutes of relevant meetings and using pre- and post-involvement evaluation forms and using our Public involvement impact log for researchers to capture and reflect on public input (templates available in the expandable section below), but other approaches may be possible too, such as:
- Measure your public involvement against Standard 5 (Impact) of the UK Standards for Public Involvement, which has indicators and examples of how these indicators could be met.
- The Public Involvement Impact Assessment Framework (PiiAF) website (funded by the MRC) is a very comprehensive site that was produced in 2013 to help researchers plan and assess public involvement. The PiiAF Guidance Document may be too detailed for many of your needs, but a quick look may still be useful
By assessing the impact of involving the public, you can help build an evidence base of public involvement activities in research, which lets others know what works well for different types and stages of research, and what can be improved. Your funders will also be interested to hear about your experience and may ask you to report on this. Many people also find it a useful exercise for their own personal and research career development.
It's also important to provide feedback to the public partners involved in your project so they know that their contributions and comments have been considered, if they have been used and whether they've been beneficial to the research. This document for researchers that was co-produced by public contributors, public involvement leads and researchers in the East of England was developed to provide guidance around how to feedback to public contributors.
Evaluation forms
Resources and tools for evaluating public involvement
These forms are a simple way of capturing both what impact people believe their involvement will have, and whether it met those expectations. The open questions asked before and after the event need to be adjusted to your research project and what you want to find out. If you use a Likert Scale for one of the questions you can undertake a quantitative analysis on this part of the assessment (which may appeal to some of your stakeholders/funders). The responses provided on these forms can also help you evaluate your public involvement.
- Public involvement impact log for researchers- This template (adapted from People in Health West of England (PHWE) 's template) should be completed following each public involvement activity throughout the project to record key areas of input and discussion with the public and any associated impact (positive and negative) on the research, the research team and those involved. This is important in order to collect impact of your public involvement.
Collecting feedback from public contributors
- General feedback form template (word) – This form allows you to collect general feedback on the structure of a public involvement workshop or event you host and highlight any issues that arised. However, it might also be possible to incorporate the questions into the public involvement event evaluation forms (see next section) to minimise the number of forms people are asked to complete
- Template form to collect impact following advice provided by public contributors
Published examples of evaluating the impact of Public Involvement
- Evaluating patient and public involvement in health research: from theoretical model to practical workshop
- The Community Impacts of Research Oriented Partnerships (The CIROP Measure)
- Can the impact of public involvement on research be evaluated? A mixed methods study
- An evaluation of the process and impact of patient and public involvement in the advisory groups of the UK Clinical Research Collaboration - Final Report (pdf)
- GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research
Sharing your involvement activities
Having included public involvement in your work, don’t stop there, we (and many others) want to hear about it too. Here are three ways you could help make your efforts - and impact - go even futher:
Three ways to share
1. Mention it in reports
Even if only a few sentences, it's best practice to mention your public involvement in the methods, and ideally discussion, section of your research report or manuscript. Editors would likely be impressed, and you’d help other researchers see that doing public involvement in research is normal practice.
- TIP: We recommend using the GRIPP2 Short Form checklist (see Table 2, p5 of the paper) to assess and report on the impact where public involvement is the secondary purpose. This paper was inspired by the original GRIPP (Guidance for Reporting Involvement of Patients and Public) paper
2. Write a blog post
PERC has a blog dedicated to sharing the latest news and guidance on participatory approaches in healthcare and biomedical research.
This includes showcasing unique public involvement stories and case studies. So if you have something you'd like to share, please email the PERC team at publicinvolvement@imperial.ac.uk and we can advise on the best approach to take.
Check out these examples:
- Case study: LoL-Lab by Nathan Green
- Case study: Developing the iKnife by Emma White
- Case study: What we learnt developing MatImms - a maternal immunisation smartphone app by Dr Beth Holder
3. Write a paper
For those with more public involvement experience, or a particular interest in public involvement, you may want to submit a piece to an engagement/involvement-oriented journal - maybe highlighting a novel approach and the impact it had. Some respected journals in this field include: Health Expectations, Research Involvement and Engagement and Research for All.
Here's an example published by a team from Imperial's HPRU-AMR.
- TIP: We recommend using the GRIPP2 Long Form checklist (see Table 1, p4-5 of the paper) to assess and report on the impact in a study where public involvement is the primary purpose
For more guidance on reporting public involvement, read our Rough Guide to Public Involvement (pdf).
Further public involvement resources & support
This hub is also not the only public involvement resource available to you. Below we've provided links to other public involvement sites, toolkits and resources that have all been designed to support public involvement in research and may prove useful to you, depending on your involvement needs and public involvement experience.
Key sites for further PPI support
Key sites for further public involvement support
- NIHR Learning for Involvement Training and Resources - launched in 2021, this platform collates training and resource materials are suitable for researchers and members of the public
- The Health Research Authority (HRA) – In its role to protect and promote the interests of patients and the public in health, the HRA now manages the research and ethics approval process for the NHS in England – for a quick itroduction, watch this HRA Approval animation. Public involvement is therefore central to their work and the approval process, and they have provided useful guidance and templates specific to this on their website
- UK Standards for Public Involvement -The UK Standards for Public Involvement are designed to improve the quality and consistency of public involvement in research. They were developed over three years by a UK-wide partnership and are a description of what good public involvement looks like and encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.
- The Applied Research Collaboration (North West London) (ARC NWL) offers eLearning modules to aide quality improvement. It’s primarily aimed at lay people, however one module entitled ‘Patient and Public Engagement/Involvement’ may be of interest. [N.B. email registration needed]
Public involvement is central to a number of departments at Imperial. Many of these have their own public involvement sites, with additional information tailored to the research field:
Need more help?
PERC is available to support and advise on public involvement activity for NIHR Imperial Biomedical Research Centre researchers and Imperial researchers affiliated with NIHR Imperial BRC research - whether it be on individual projects or larger programmes of research. If you are part of the Imperial BRC please complete our Request for Support and Public Involvement Planning and Impact online tool which is intended to: (1) assist us with managing the public involvement support provided by the PERC team; and (2) provide us with the information we need to advise you on planning and undertaking your public involvement activity.
If you are part of another research group or centre, please go to our public involvement advice page for further details about who to contact.
For any general advice, please contact us on publicinvolvement@imperial.ac.uk or 0207 594 3822 or if you work outside of Imperial College, please visit our Get in touch tab to find the best way to get in touch.
We will continually explore how we can improve the content we provide via this Public Involvement Resource Hub. In the meantime, if you have any comments or have spotted a mistake, please get in touch.