PPI Resource Hub
The PPI 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 patient and public involvement (PPI) 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 PPI guidance. And information about upcoming PPI training sessions can be found on our PPI training page, along with links to other training resources for both researchers and members of the public.
An overall view of PPI
Patient and public involvement in research doesn't need to be complicated. The key thing to remember is that PPI 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 PPI 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.
When to involve people in your research
Patient and public involvement can provide benefits at all stages of the research cycle. NIHR INVOLVE, a government-funded organisation that’s leading PPI coordination, 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 PPI 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
For a summary of this content, download our Rough Guide to Public Involvement (pdf).
Why involve the public or patients
The NIHR organisation INVOLVE 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. And within the research stage pages above, we've 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 PPI plan and guide your choice of approach, but will enable you to evaluate the process at the end too. See 'Evaluating Impact' for ideas and tools to help with this, including PERC's draft Impact Assessment Plan, which has been designed to facilitate and consolidate the process of planning and evaluating PPI.
Find out why other Imperial researchers did PPI, by reading their case studies on our blog.
Deciding who to involve
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 a number of approaches to consider:
Deciding who to involve
Experts by experience (e.g. patients and carers)
There are a number of ways to reach patients who live with a specific condition or disease:
- Healthcare professionals – Do you know anyone working in the field? Will they let you put up posters in an outpatient clinic? (N.B. this does not require ethics approval when it’s for PPI)
- Third sector organisations and charities – these groups will often have a large network of patient contacts, and be happy to support you getting in touch
- Your research teams' website and/or Twitter handle – this could be an easy way to advertise opportunities; however, it’s best not to rely on this approach, 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 considered as suitable candidates to involve in condition-specific research issues.
General public (also known as 'lay partners/contributors')
This means people who act as representatives of the non-clinical/non-research expert view. They may or may not also have a health condition. It’s good to remember that members of the public or patients are often able to offer advice that’s relevant and translatable to condition-specific research.
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, social media, and public engagement events may be your best option.
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.
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:
- People in Research - This INVOLVE-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 very experienced in PPI
- Voice - Voice is an organisation that aims to capture the publics' vast experience, ideas, opinions and expectations about the research, innovations and policies affecting their lives. They support over 10,000 members of the public, of all ages and backgrounds, to become actively involved in contributing their insights and visions. Through this platform researchers are able to engage in discussions with members, as well as post opportunities for involvement in their research
Choosing your PPI approach
Once you’ve identified an opportunity to involve people in your research, understand why you're asking people to help, and have considered who you’d like to involve, you need to decide what approach to take.
Here's 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.
Evaluating the impact of your PPI 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 PPI project. It requires some planning and thinking about BEFORE you start your PPI 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-PPI evaluation forms (templates available in the expandable section below), but other approaches may be possible too, such as:
- Our DRAFT PPI Impact Assessment Plan (pdf), which we would like to pilot with researchers within Imperial. We developed this tool to simplify and consolidate the process of planning and assessing the quality and impact of PPI in research. Please get in touch if you'd be interested so we can email you with more information. Ideally, you have a rough plan but haven't yet started.
- Measure your PPI against Standard 5 (Impact) of the National 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 PPI. 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 lay people, you can help build an evidence base of PPI 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.
Published examples of evaluating the impact of PPI
- 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)
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 PPI.
- Pre-/Post-PPI evaluation form – for members of the public (word)
- Pre-/Post-PPI evaluation form – for researchers (word)
- General Feedback form template (word) – This form allows you to collect general feedback on the structure of a PPI workshop or event you host and highlight any issues that arised. However, it might also be possible to incorporate the questions into the PPI event evaluation forms (see next section) to minimise the number of forms people are asked to complete
Sharing your involvement activities
Having included PPI 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 PPI 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 PPI 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 of PPI in a study where PPI 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 email@example.com and we can advise on the best approach to take.
Check out these PPI examples:
3. Submit a PPI-focused paper
For those with more PPI experience, or a particular interest in public involvement, you may want to submit a piece to a PPI-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.
- TIP: We recommend using the GRIPP2 Long Form checklist (see Table 1, p4-5 of the paper) to assess and report on the impact of PPI in a study where PPI is the primary purpose
For more guidance on reporting PPI, read our Rough Guide to Public Involvement (pdf).
Further PPI Resources
Depending on your involvement plans, you may need to draft some documents to be used either by those in your team or the people you involve (e.g. role descriptions, recruitment posters, consent forms, feedback forms etc). In addition, it's now accepted practice that patients and members of the public are appropriately supported and rewarded for their time and contribution to research.
To help with these aspects, along with developing our Rough Guide to Public Involvement (pdf), we’ve collated some core documents, guides and example templates below for you to download and use, where relevant:
Putting PPI into practice
PPI planning and project documents for researchers
- 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
- PPI Panel recruitment poster template (ppt) – This is an example to give you an idea of where to start. It needs to be clear and simple and give your target audience all the relevant information
- Workshop agenda template (word) – When holding a PPI 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 about they may have
- Policy on payment of fees and expenses for members of the public actively involved in research, Feb 2016 (pdf) - We recommend you use this guidance, developed by NIHR INVOLVE, 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.
PPI lay partner documents
- Background Form (Word) – To be used when recruiting people to be involved. It helps with assessing diversity, PPI 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.
- Training/Support questionnaire (word) – Use this form once you’ve recruited people to your project to understand their current level of PPI experience and identify any additional training needs
- 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 PPI 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 (word) – 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 them
- Confidentiality agreement (word) – 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
- Ground rules template (word) – 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
- PPIE Privacy Notice July 2018 (PDF)- 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.
Consent forms for lay partners
- Photo Consent Form May 2018- adults only (pdf) – 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
Expense and finance forms
- Policy on payment of fees and expenses for members of the public actively involved in research, Feb 2016 (pdf) – We recommend you use this guidance, developed by NIHR INVOLVE, 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.
- Imperial College Expense Claim Forms (link, for Imperial staff + students 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
- Non-payroll fees (NPF) form (link, for Imperial staff + students 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 PPI 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
- Lay Partner Invoice Template (word) (for Imperial staff + students only) - If a lay 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 treated as a supplier and be approved as such on the finance system
This hub is also not the only PPI resource available to you. Below we've provided links to other PPI 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 PPI experience.
Key sites for further PPI support
Downloadable PPI guides for the public
Key sites for further PPI support
- NIHR INVOLVE – Etablished in 1996, this government funded programme is considered the central portal for PPI expertise, insight and research. It's part of, and funded by, the National Institute for Health Research (NIHR), to support active public involvement in NHS, public health and social care research. Visit their site for the latest insight on PPI in research
- 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
- EUPATI – The European Patients' Academy (EUPATI) is a pan-European project established as a collaborative partnership between the pharmaceutical industry, acadeia, not-for-profit, and patient organisations. They focus on education and training to increase the capacity and capability of patients to understand and contribute to medical research and development
- Public Involvement Standards Development – A UK-wide partnership project that aims to improve the quality and consistency of public involvement in research through the development and introduction of national standards. A consultation was carried out in 2017, and from April 2018 to April 2019, work will be underway to pilot how the developed standards can be put into practice
- Imperial College London – Patient and public involvement is central to a number of departments at Imperial. Many of these have their own PPI sites, with additional information tailored to the research field:
1. Patient Safety Translational Research Centre
2. Imperial Clinical Trials Unit
3. NIHR Health Protection Research Unit in Modelling Methodology
4. NIHR Health Protection Research Unit in Respiratory Infections
In addition, Imperial are dedicated to , which looks more generally at how we share the wonder and importance of what we do here at Imperial with the public - including schools, patients and local communities.
Plain English PPI glossaries
- INVOLVE’s plain English ‘jargon buster’ of research terminology
- EUPATI glossary (available as PDF)
- Keele University ‘Glossary for Patient/Public Research Partners’ (downloadable)
- Imperial College online glossary of terms relating to research governance, and health and social care research
- Imperial College Healthcare NHS Trust research glossary
Formal PPI frameworks, guidance and tools
- Ethical standards framework (pdf): a framework for public involvement that provides guidance on how to maintain high ethical standards during the process
- 4Pi National Involvement Standards: established with mental health services in mind, this project (and available reports) outlines guidance and standards for PPI that apply to any field
- Public Involvement Impact Assessment Framework (PiiAF): a website and toolkit produced to help researchers assess the impact of involving members of the public in their research in diverse fields from health care to local history
- PiiAF Cards on the Table discussion resource (pdf): a game based on findings from the PiiAF evidence review that aims to promote discussion of values associated with public involvement in research. Use this to facilitate discussion within a project team, as part of impact assessment, or as a development tool to help you identify the aims and expected impact of PPI
- PiiAF Tokenism Game (pdf): interactive resource to stimulate discussion and debate about tokenism within public involvement and how to avoid it based on the findings from the PiiAF study group’s Delphi research. Use this as part of an impact assessment, or as a development tool to help you identify the aims and expected impact of PPI
- New National PPI Standards - in development
- Additional list of resources compiled by the Public Involvement Standards Development team
Downloadable PPI guides for researchers
- Patient and public involvement in health and social care research: a handbook for researchers (pdf), by NIHR Research Design Service
- Guidance on Co-Producing Research, March 2018 (pdf), produced by NIHR INVOLVE
- Briefing notes for researchers: public involvement in NHS, public health and social care research (pdf), produced by NIHR INVOLVE
- A Researchers Guide to PPI (pdf), produced by University of Oxford
- PPI booklet for researchers (pdf), produced by Parkinson’s UK
- Frequently Asked PPI Questions (pdf), produced by Sheffield Teaching Hospitals
- Public Involvement in Alcohol Research, Nov 2017 (pdf), produced by Alcohol Research UK
Need more help?
PERC is available to support and advise on PPI activity for NIHR Imperial BRC researchers and Imperial researchers affiliated with NIHR Imperial BRC research - whether it be on individual projects or larger programmes of research.
If this applies to you and you have a PPI query or would like general advice, please contact us on firstname.lastname@example.org. We may also be able to offer guidance over the phone: +44 (0)20 7594 9774. If your request is about a forthcoming Fellowship application, please include the following information with your email: Name of Fellowship scheme; Application deadline; Lay summary of your research; Bullet point description of proposed PPI; Specific issue(s) you wish to discuss.
If you work outside of Imperial College and/or the NIHR Imperial BRC, please visit our Work with us tab to find the best way to get in touch.
We will continually explore how we can improve the content we provide via this PPI Resource Hub. In the meantime, if you have any comments or have spotted a mistake, please get in touch or complete our short online survey.