Patient and Public Involvement for basic researchers

We find out about PPI in research — which has nothing to do with insurance — and how it can help you as a basic researcher.

Patient and Public Involvement (PPI) is when researchers and people affected by health conditions work in partnership to plan, design, implement, manage, evaluate and/or disseminate research.

There are lots of examples of how to incorporate PPI into clinical research, but it is important to remember that PPI is also an essential part of the research process for basic scientists too.

Why is PPI important in basic research?

Communicating the benefit and potential impact of basic research to non-expert audiences can be difficult, so initially it can seem challenging to incorporate PPI into basic research. However, this is one of the reasons why PPI in basic research is so valuable — people affected by health conditions can help you to communicate the importance and impact of your work in a way that is understandable for non-expert audiences, including lay panel members who review funding applications.

How can you involve in basic research?

It is important that involvement is meaningful and that it adds value to the research.

You can work in partnership with patients and the public on basic research projects to:

• Identify and prioritise your research question
• Improve the readability of your lay summary for grant applications
• Design effective ways of communicating your research findings to non-expert audiences
• Put your research into context and think about the relevance and impact of your work in relation to the ‘bigger picture’

The impact of involvement

Involving people in basic research can have a huge impact on both researchers and the people involved.

For volunteers, involvement in basic science research gives them the opportunity to develop their knowledge and understanding of this type of research. It also gives people affected by health conditions an increased sense of empowerment, and a chance to ‘have their say’ as experts living with the condition.

As well as improving the quality and relevance of the research conducted, involvement can be extremely motivating and encouraging for basic science researchers, particularly when direct contact with patients and members of the public is not a regular part of their work. The impact of involvement often goes beyond the researcher’s expectations, allowing them to gain new perspectives on their research and what it should look like in the future.

Hear from a basic scientist

For Heather Mortiboys, a Parkinson’s UK Senior Research Fellow based at Sheffield Institute of Translational Neuroscience, involving people affected by Parkinson’s had a significant impact on the direction of her research investigating how the batteries of the cell die in Parkinson’s.

Watch the short video below to see how she involved people affected by Parkinson’s in her research, the impact it had on her work and her tips for other Parkinson’s researchers thinking about PPI.

We would love to support you to involve people affected by Parkinson’s throughout your research. To find out more, check out our PPI resource for researchers or email us at researchinvolvement@parkinsons.org.uk.