Patient and Public Involvement and Engagement Overview and Support for WIPH Staff

These pages are designed to signpost you to information that will help you: 

1. Understand what Public and Patient Involvement and Engagement (PPIE) in research is. 
2. Find support available to researchers to plan and deliver high quality PPIE activities. 
3. Identify sources of training and support for public contributors.  
4. Understand how to reward PPIE contributors for their time, effort, and expertise.  

Information about one-off PPIE events and training sessions will be disseminated through the monthly WIPH Newsletter and the bi-monthly WIPH Research Newsletter.

Monthly post award Patient and Public Involvement and Engagement drop in sessions are available to share knowledge about excellent PPI practice and troubleshoot any PPI issues people are experiencing during the course of their projects. You will receive Teams invites from WIPH-all@qmul.ac.uk 

If there are any updates or inaccuracies that would help improve these pages, please email: involve-wiph@qmul.ac.uk 

Understanding PPIE

In their Patient and Public Involvement and Engagement Resource Pack the National Institute of Health Research (NIHR) provide the following definitions of Involvement, Engagement and Participation in Research:   

• Involvement: When the public get involved in research and work alongside researchers to shape what is researched, how research is carried out, how research findings are applied in practice.  
• Engagement: The sharing of information and knowledge about research through public events and forums (e.g. science festivals, awareness raising campaigns and meetings and workshops).  
• Participation: When a member of the public is recruited to take part in a study (e.g. a c clinical trial or a qualitative interview about their experiences of a health issues or service).  

Below are some resources from different funders about PPIE. There is no one-size-fits-all approach to PPIE. Your PPIE activity will depend on who you are engaging with, and the type of research being done. Given this, PPIE is something you need to think about from the early stages of project development. 

Remember that different funders use slightly different terms to describe and conceptualise PPIE. When preparing a bid please make sure you understand how funders understand PPIE and expect it to be conducted.  

• The National Institute of Health Research 
• UK Research and Innovation  
• The Wellcome Trust 

The National Coordinating Centre for Public Engagement (NCCPE) also provide an excellent range of resources that can help you to develop your PPIE practice.  

You study context and approach (country, region, discipline etc.) will also determine the nature of your PPIE.  

Pre-award support and advice

As PPIE can take many forms, it is helpful to get inputs on your PPIE plans when you are developing bids or long-term PPIE support for your Centre and Unit research activities (e.g. advisory boards who work across multiple projects and advise on local PPIE strategy).  

At QMUL and the WIPH pre-award PPIE advice can be accessed via: 

1. The Centre for Public Engagement Advice Surgeries 
2. The WIPH PPIE drop-in sessions (all WIPH staff are invited to attend this clinic as a matter of course via regular calendar invitations).  

Many Units and Centers at the WIPH also have PPIE coordinators, other staff and activities that can support you. If you still have questions after attending the advice surgeries and drop-in sessions please approach them for additional help.  

Centre for Cancer Screening, Prevention and Early Diagnosis (CCSPED)	CCSPED has dedicated PPIE resources tailored to its own portfolio of research. Please contact ccsped-ppi@qmul.ac.uk
Centre for Primary Care Research	Jamie Ross is the PPI lead for NIHR School for Primary Care Research at QMUL. Support is available for identifying PPI input and funding SPCR related PPI activities.   Pleased contact:  jamie.ross@qmul.ac.uk
Centre for Preventive Neurology	Alison Thomson leads the Centre for Preventive Neurology PPI working group which meets quarterly to support all staff within the CPN in their PPIE activities. She is also co-lead of the WIPH Public Advisory Panel Theme.   Please contact: a.thomson@qmul.ac.uk
Centre for Evaluation and Methods (CEM)	Cherrelle Salmon is the dedicated PPIE Coordinator CEM. Please contact: c.salmon@qmul.ac.uk
Centre for Public Health and Policy	Megan Clinch is also co-lead of the WIPH Public Advisory Panel Theme. Please contact: m.clinch@qmul.ac.uk
Centre for Psychiatry and Mental Health	TBC.

Below are links to external PPIE resources, including face-to-face advice opportunities, online guides and in-person training sessions.  

The Six UK Standards for Public Involvement: A good place to start when planning how to involve members of the public in research is the Six UK standards for Public Involvement. These provide a description of what good public involvement looks like. They encourage approaches and behaviours that constitute the hallmarks of good public involvement, such as flexibility, sharing and learning, and mutual respect. 

When thinking about who you should involve in helping design your research, it is important to think about including people who represent the population the research is ultimately for. It is now widely acknowledged that the diversity of PPI contributors is poor. Ensuring a diverse – and representative – group of PPI contributors is a key way to help tackle this. If you would like to discuss the PPI requirements for your research in more detail, you can consult the Wolfson PPI Working Group through the monthly WIPH PPIE drop in sessions.  

NIHR Guidance for Researchers on PPI: This link provides notes on what PPI is, why it is important, why members of the public get involved, how to do it, and how to invite people to be involved.  

NIHR: PPI Resources for Applicants to NIHR Research Programmes: Different awarding bodies will have different PPI requirements. The following link will take you to some useful resources put together by NIHR. 

QMUL JMRO: Involving Patients in Research: The Joint Management Research Office (JRMO) pages provide information on sources of funding for PPIE inputs at the bid development stage, as well as an extensive list of PPIE resources for researchers. 

NIHR: Inclusive PPI: What are some of the things to think about to ensure better inclusivity in public involvement in health and social care research? How do we develop inclusive research communities? 

Research Support Service (RSS) Hub delivered by Imperial College London and Partners: Researchers close to grant submission can request a grantsmanship review from leading experts with panel experience via the research Support Service (RSS).  A post-application advisory support and planning service is also available to successful applicants.  

This hub is particularly keen to support those without established academic networks, or those working in areas or disciplines with less of a research presence. 

UCL: PPI Resources: University College London have compiled a list of very helpful useful resources to promote and support PPI. These are aimed at: 

• Patients, carers, and members of the public who want to get involved in clinical trials 
• Researchers wanting to involve them 

Imperial College London: Public Involvement Resource Hub 

ARC North Thames: An Introduction to PPI for Researchers  

Cancer Research UK: Patient involvement toolkit for researchers 

Costing your PPI work 

Please make sure that you seek advice on how to cost your PPIE activities properly during the pre-award phase of the research (see the tab on PPIE reward and recognition for further details).   

Please follow the QMUL JMRO guidance on Reimbursing expenses and payments for involvement and participation in research - Joint Research Management Office (jrmo.org.uk)

If you do not have funds to support PPIE contributors at the pre-award stage, there are some possible sources of funding you might want to apply for: 

The Centre for Public Engagement Small Grants Scheme (up to £1000, decisions made monthly) 

If you are applying for funding from the School for Primary Care Research, there are some funds for pre-award support you can apply for. Please contact Juliet Henderson for further details: juliet.henderson@qmul.ac.uk  

Post-award and other PPIE support  

WIPH PPIE Drop-in Session: In addition to pre-award support, the WIPH drop-in sessions also provide an opportunity for you to share any PPIE issues and successes with experienced colleagues from the Institute. Some sessions are ‘open’ discussions, while others are topic-based and can help explore and address specific PPIE issues that people are experiencing. If you would like to suggest a topic for a drop-in session, please email your request to: involve-wiph@qmul.ac.uk 

WIPH PPIE Strategic Working Group: This group includes representation from academic and professional services staff from across the WIPH who undertake extensive PPIE activities as part of their role. The aim of this group is to identify and act on ongoing PPIE issues, and to advocate for excellent PPIE resources and support in the longer term. If you think you have a strategic PPIE issue that needs to be explored by the group, please email Megan Clinch.    

Recruiting PPIE representatives:

The WIPH Patient and Public Involvement (PPI) Opportunities Newsletter is a monthly resource connecting researchers with members of the public who are interested in contributing to health research. This newsletter will help streamline how we share PPI opportunities and engage with potential contributors.

The WIPH PPI Newsletter Toolkit [PDF 377KB] has been developed to guide you through the process, from submitting a request to payment of PPI contributors, in more detail.

Please ensure you read the toolkit in full before submitting your request.

To advertise a PPI opportunity:
✅ Submit your request via this form before the end of the month.
✅ At the beginning of the next month, the newsletter will be sent to the PPI pool.
✅ Interested members of the PPI pool can then contact researchers directly to express their interest.

Members of the public can add themselves to the pool by filling out this form. We encourage you to help grow our PPI pool by inviting any current PPI contributors you work with to sign up for the newsletter. Doing so will help to ensure our contributors can access a wide range of opportunities and continue to contribute to research once funded projects that have been involved in come to an end.

 

PPIE training for contributors:

Many PPIE training opportunities for researchers are also open to contributors. Offering training is an excellent way of supporting contributors to feel confident and empowered about their role. Below is a list of online and in-person training courses open to PPIE contributors: 

• Imperial PPI Training 
• NIHR Training Resources for PPI contributors  
• National Coordinating Centre for Public Engagement (NCCPE), Training for Public Engagement 
• University College London Biomedical Research Centre PPI Training 
• University of Cambridge Biomedical Research Centre PPI Training 

Training opportunities are also shared via the fortnightly WIPH Good Newsletter and the weekly Research Roundup.  

Note there are costs associated with some of these training opportunities. Please make sure that training and support for contributors and researchers is costed at the pre-award stage. There is currently no central WIPH funding for PPIE training. 

If you know of further resources that you think your colleges across the WIPH might find helpful, please email involve-wiph@qmul.ac.uk and we will add them here.  

 

Public Engagement: 

The Centre for Public Engagement run regular fortnightly Advice Surgeries where you can pick the team’s brains about all things public engagement. They are happy to discuss potential ideas, assist with project development, look at logistics, signpost to funding, and more, both within Queen Mary and across the wider public engagement landscape. 

QM Centre for Public Engagement Advice Surgeries 

 

• The individual’s role must be directly linked to research, particularly in a PPI (Patient and Public Involvement) capacity.
• Each application will be assessed on a case-by-case basis to determine the suitability of an honorary contract, based on the individual’s involvement.

• A QM member of staff submits the required paperwork, including a completed application and the candidate’s CV.
• The WIPH Executive Board reviews the applications on a case-by-case basis.

 

Blizard Institute (BI) & Wolfson Institute of Population Health (WIPH) Involvement & Engagement Research – Devolved School Research Ethics Committee (IER-DSREC)

What is the IER-DSREC?

The IER-DSREC is the devolved ethics committee responsible for low-risk research that involves patients, the public, or students within the Blizard Institute and WIPH. Its remit sits beneath the University-wide Queen Mary Ethics of Research Committee (QMERC), which delegates authority to the School level for defined, low-risk studies.

Our committee safeguards the rights, dignity and welfare of participants, ensures projects comply with data-protection legislation, and upholds Queen Mary’s commitment to research integrity (Strategy 2030).

Scope of review

We review projects that are:

In scope	Out of scope / refer elsewhere
PPIE research judged low risk Undergraduate and postgraduate PPIE studies Educational research focusing on our own students	Any study recruiting NHS patients or accessing NHS data – must go through NHS REC Projects classed by UKRI or JMRO guidance as more-than-minimal risk Routine PPIE activity that is not research

 

Does my PPIE activity need ethics review?

• If your PPIE is purely consultative (shaping methods, reviewing public-facing materials) and you will not analyse or publish contributors’ responses as contributions to knowledge/research data, no ethics review is required.
• If you intend to treat the PPIE interaction itself as research data, collecting, analysing, or publishing data, apply for ethics approval.
• When in doubt, email ier-dsrec@qmul.ac.uk for tailored advice before you start, or attend a WIPH PPI Drop-In (these are monthly sessions that should be in your calendars).

 

How the committee works

• Chaired by senior academics, with at least two additional academic reviewers and independent (public/community) members. Additional experts are consulted when needed.
• Applications are reviewed on a rolling basis, and applicants typically receive either a decision or any queries within 14 days of submission.
• Reviewers undertake annual ethics training; applicants can access support from the University Research Ethics Facilitators.

 

Submitting your study

1. Complete the low-risk ethics application form (template available: DSREC Application form template [DOC 74KB])

2. Complete the supporting documents (template available: DSREC Application form template [DOC 74KB]).

• participant information sheet,
• consent form,
• recruitment material.

3. Email the form and supporting documents to ier-dsrec@qmul.ac.uk.

4. The administrator allocates your application to at least two reviewers; you will receive either:

• Favourable opinion – you may begin data collection, or
• Queries/request for revision – respond promptly so approval can be granted

5. Once approved, your project is logged centrally and you will receive an ethics reference number for use in all reporting.

Key tip: Build in at least four weeks before your intended start date to allow for committee deadlines and any revisions.

 

Contact us

• General enquiries & submissions: ier-dsrec@qmul.ac.uk
• Committee administrators:
  • Dr Andrew Durham – a.durham@qmul.ac.uk 
  • Dr Alison Thomson – a.thomson@qmul.ac.uk 
  • Eolan Healy – healy@qmul.ac.uk