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‘Talking about… patient and public involvement (PPI) in mental health research’ – a new video series from the NIHR Mental Health Research Incubator

‘Talking about… patient and public involvement (PPI) in mental health research’ – a new video series from the NIHR Mental Health Research Incubator

01 October 2021

Heather Boult, PPI Contributor in mental health research, Gail Thornton, Lived experience expert & panel member and Jo Welsman, PPI Lead (RDS SW)

Patient and public contributors have much to offer mental health research. Those of us who live with mental health conditions 24/7 bring to research an intimate knowledge of what it’s really like to live with that condition. We’ve often experienced many different therapies and treatments and bring insights about what works well and what we would like from new research or developing therapies. Our lived experience brings fresh eyes and new insights to complement the researchers’ academic knowledge. Bringing both together in designing and carrying out new research can lead to the best outcomes for those who might benefit from the research in the future.  We are really keen that we share best practice for how mental health researchers and patient and public contributors can work together.

That’s why we got involved in a Mental Health Research Incubator initiative: Talking about… PPI. There are lots of resources out there to support researchers who are trying to do good PPI, but sometimes there’s nothing like a shared experience, personal tip, or a helpful nudge in the right direction. That’s some of what we’ve tried to share in our video series.

In our first conversation, researcher Emma and public contributor Heather talk about what works and doesn't work when it comes to PPI. Trust is vital! Heather offers practical examples of what researchers can do to do it well. She offers researchers encouragement - people are often very happy to be asked to be involved.

In our longer conversation, PPI lead Jo shares her three top questions that researchers should be asking to get themselves on the right track for doing some great PPI. Gail – a funding committee member with nine years’ experience as a lived experience expert in mental health research – goes on to discuss the ‘no-no’s - the red flags in a funding application, and also the importance of the people in your team who support your PPI work.

In our last conversation, Heather talks to researcher Simon about the joy of working in partnership with public contributors – as well as speaking candidly about some of the challenges. You can hear about some fantastic ideas, including the ‘no jargon’ buzzer.

We made these videos to support, reassure and encourage mental health researchers in their work with public contributors. Do take a look at them, and at the recommendations for resources that we have shared and do let us know what you think.

And to get you started, here are some of Heather’s top tips:

  • Ask your public contributors how, where and when they want to work with you.
  • Invite them to share what they feel are important topics to talk about – good PPI is a two-way conversation where everyone’s knowledge is equally valued.
  • Allow more time than you think – both in meetings and overall.  
  • Negotiate ways of working with your public contributors so everyone agrees ground rules around confidentiality and how to best create a productive and safe working space.
  • You need to allow time for feedback from your public contributors and you need to always allow people to take time-out from difficult discussions.
  • Don’t underestimate what you are asking public contributors to do. In working with you, public contributors are often reliving traumatic or distressing experiences and researchers need to be patient and empathetic.

Finally, we'd like to let you know that the Research Design Service has specialist advisers who can advise you about ensuring you have appropriate and meaningful patient and public involvement and engagement in your research applications. They also work in partnership with people with lived experience on whose expertise you can draw in designing your research. In addition to this, there are funds available to support PPIE consultation with the development of your research application and you can access lay reviews of your funding application prior to submission. So, do please get in touch with your local RDS to access their expertise and support for this crucial aspect of your research design and funding application.

We hope you enjoy the videos and find them useful. You can find them and the resources that we recommend on the Mental Health Incubator website.


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