Patient Public Involvement and Engagement

Patients or public members may be involved through different or multiple stages of research. This could be from creating the research question through to how we share and engage the public in research.

In education, patients or the public may be involved in designing the teaching we deliver to our students. They may even deliver it with us.

Working together can enrich and enhance our research and education. It must also benefit the public/patient members involved. It can do so by increasing the public understanding of science and bringing their needs into the education of the next generation of graduates.

The tools on this page can help with getting started in PPIE.

PPIE Planner

This PPIE planner was funded and developed by the NIHR Newcastle Biomedical Research Centre (BRC) and the Faculty of Medical Sciences at Newcastle University.  

This digital planning tool, can be used by researchers to plan their PPIE activities. This tool enables researchers to consider PPIE at different research cycle stages, diversity and inclusion, and measuring impact.

We consulted with colleagues at the NIHR Centre for Engagement and Dissemination to avoid duplication in developing similar resources. 

This tool is available on the Plan4PPIE website.

Learn more about the NIHR BRC on their website.

Other things to think about in PPIE

Depending on who you involve or engage with may mean certain processes must be in place. It is important to check the need for Disclosure and Barring Service checks when working with the public or patients. There are different levels of checks, please see GOV.uk for more information.

Conducting PPIE on or off site will also require the completion of a Risk Assessment. For more information or support for colleagues, contact the FMS Engagement Team.

Ethical review is often not required for involvement when gathering public or patient opinion on research questions or design. It's essential to be ethical in this process. This could be by:

• maintaining confidentiality where appropriate
• provision of appropriate training
• ensuring support and monitoring the safety of those involved

It is also important to recognise when public involvement will need ethical review. For example, if they have contact with study participants, or provide data in the process of involvement.

PPIE remuneration

Patients or the public involved in research or education must be remunerated for their time and effort. This may include a small contribution for the time spent working on the projects, travel or food costs. We are working collaboratively with colleagues across the University to improve our remuneration process. 

Support for conducting an engagement activity

We have Engage FMS branded materials such as t-shirts and tablecloths you can use. We also have a Feedback Kit that includes iPads, template surveys, clipboards, pens, and voice recorders. We are also happy to discuss how you may collect feedback on your activity. Please contact the FMS Engagement Team for more information.

Ethics in PPIE

Engaging with public contributors, patients, service users, experts by experience, and communities is essential to health and social care research. Ensuring that marginalized and excluded voices are central to this research promotes social justice. 

The National Institute for Health and Care Research's (NIHR) Applied Research Collaboration (ARC) North East and Cumbria released some Ethical Practise Guidelines to try to ensure that PPIE is conducted ethically and inclusively. You can learn more about the ARC here.

The guidelines emphasize the importance of engaging marginalized voices and building sustainable, equitable partnerships in research. They are designed for a wide audience, including researchers, public contributors, and voluntary, community, and social enterprise (VCSE) organizations. This resource encourages ethical literacy, helping the research community consider the broader ethical implications of PPI/PPIE work. You can read the guidance here.

The NIHR have briefing notes which clearly set out when ethical approval is needed for PPIE activity. They can be read here.

NIHR HealthTech Research Centre (HRC) in Diagnostic and Technology Evaluation

Part of the National Institute of Health and Care Research and hosted by Newcastle upon Tyne Hospitals NHS Foundation Trust in partnership with Newcastle University. They evaluate new diagnostic tests and devices, such as technologies related to imaging, artificial intelligence and digital healthcare. They work with innovators, helping them to obtain funding and to generate a portfolio of evidence as they bring their diagnostics to the UK healthcare market.

 We evaluate diagnostics for:

• Ageing and Multiple Long-Term Conditions
• Infection
• Precision Medicine and Rare Diseases

 Our independent expertise includes:

• Advice on clinical scenarios and patient care pathway analysis
• Design, set up and analysis of clinical evaluation studies
• Health economics

Read more about NIHR HRC here.

Multiverse Lab

Multiverse Lab is an innovative public engagement project. In 2020-21 it asked people across the North East and Cumbria, “What is the health or social care breakthrough you hope to see in your lifetime?”

Search the archive to inspire research or engagement projects. You can search the archive by keyword to find out what people had to say about specific topics or just explore.

You can view a summary report that highlights the most talked about issues at Multiverse Lab.

We Are So Much More

We Are So Much More was a creative writing project with Mustard Stories Arts. We worked with patient groups around the North East to explore living with long term conditions through creative writing. Over 40 members of the public wrote pieces for the published anthology. The published book details real lived experience. We created a toolkit. This is so researchers can use creative writing techniques in their engagement.

Visit our Training page for information on training sessions for PPIE.