Patient Public Involvement and Engagement
One of the major areas of our engagement work in FMS is involving patients or the public in our research and education.
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.
Voice
Voice is a bespoke co-designed platform. It aims to make it easier than ever to engage the public in research at every stage.
The Voice platform provides researchers with access to their citizen community. This enables the involvement citizens who have the experience and skills needed. We can with co-design, co-prodution and co-development of projects using the tools.
Voice is free to use for Newcastle University colleagues. You can access Voice via their website.
The Voice Digital Platform
We facilitate patient and public involvement through our digital platform. This makes it easy for researchers to engage with members of the public who have the relevant experience to contribute to their projects. Researchers can create a researcher account on the platform. Here they have access to their dashboard. This allows them to create, manage and recruit for involvement opportunities such as:
- workshops
- events
- surveys
- interviews
Voice also runs monthly Research Support Groups on the first Wednesday of each month. This is a free service available to Newcastle University researchers. The groups provide feedback from a diverse group of engaged public members. Our support groups consist of three panels. Two of these are in-person and one is online with national representation. They each have 10-12 members of various ages and backgrounds. These groups offer critical and constructive feedback on:
- lay summaries
- project proposals and concepts
- research ideas
- participant information documents
- methodology
- dissemination strategies
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.
Equality, Diversity and Inclusion toolkit for researchers
This is an Equality, Diversity and Inclusion (EDI) Toolkit created for researchers. It aims mostly at people who lead research teams but can be used by anyone who delivers or enables research. It is designed to support you in understanding of EDI issues in and around research.
You can learn more about the EDI Toolkit by visiting their website.
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.
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.