Resources to help you involve patients and the public in research

The importance of Patient and Public Involvement and Engagement (PPIE)

Our experience is that patients and the public are interested in being part of and getting involved with health and social care research for a variety of reasons. Not only do they hope to benefit from more treatments, but they also want to help others who are experiencing the same condition as them.

As a health or social care professional, you have a great opportunity to encourage more patients and carers to be part of research which will improve future health care and treatment. Your relationship with patients is crucial to helping patients find their way into research.

You can find out more about Patient and Public Involvement and Engagement (PPIE) on the NIHR website via the link below, or you can browse our list of helpful resources on this page.

Ways that you can help get patient and the public involved

Resources on public involvement

The NIHR Applied Research Collaboration (ARC) North East and North Cumbria offers a range of online training courses to support you in public involvement and community engagement.
Funding public involvement at the grant application stage can be challenging. The NIHR Research Design Service (RDS) ‘Public Involvement Funds’ aim to bridge that gap.
The Be Part of Research service aims to link members of the public with studies they can take part in.
The UK Standards for Public Involvement are a framework for what good public involvement in research looks like.
The NIHR RDS offers a useful guide to public involvement in funding applications.
Learn about what Research Champions do and how you can work with them.
The NIHR RDS has put together 10 guiding principles on building meaningful relationships with communities in their Community Engagement Toolkit.
Join Dementia Research is a place for members of the public to register interest in vital dementia research.

Resources on equality, diversity and inclusion (EDI)

Research Abilities gives researchers across the UK the opportunity to discuss their research ideas and plans with a group of people with learning disabilities.
Explore some top tips on setting up a patient and public involvement group in a care home.
Read the Health Innovation (HI) North East and North Cumbria's review on making health and care digitally inclusive.
NHS England has published a guide on increasing diversity in research participation.
Learn about how to work effectively with translators and interpreters.
This webinar provides an overview of creative and collaborative approaches to communicating and researching with children and young people.
View the NIHR ARC North East and North Cumbria's toolkit for increasing participation of BAME groups in health and social care research.
Explore the NIHR RDS's equality, diversity and inclusion toolkit.
Read some guidance on improving inclusion of under-served groups in clinical research.
The Research Targeting Tool is designed to help anyone working with the NIHR to make intelligent choices about the placement of research sites according to health need (NIHR login required).

Resources on community research

This microsite has been set up to help you access key information to engage people from wider care and community settings in your research.
ENabling Research In Care Homes (ENRICH) provides a toolkit of resources to help you run studies in care homes.
This dashboard provides an overview of primary care research activity in the NIHR Clinical Research Network (NIHR login required).

Was this page useful?

Add your feedback

There was an error submitting your feedback, please try again.

Thanks for your feedback, this will help our team improve your experience on the website