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 and Car 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 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:

Four steps in PPI - identify opportunity, speak to people, change plan, evaluate outcome

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


W
ithin 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:

  1. The population on which your research is based, e.g. specific patient groups or public health; and
  2. 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

Resources for recruitment


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 whats 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

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:

 

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

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

Budgeting for involvement and paying public members

Resources and tools for writing grant applications


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:

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


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.

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:

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 ExpectationsResearch 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


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.