Creating a roadmap putting people at the centre of our research

  • August 8th 2023

We understand that putting people at the centre of our research makes it stronger. We know too that listening to the voices of the people who stand to benefit from it most will help to make treatments, diagnoses and medical technologies more effective. But how to do that? We’ve worked with NIHR Exeter Clinical Research Facility, researchers and public representatives across the South West Peninsula to develop a joint strategy that creates a roadmap to help us.

What is PPIE?

Put simply, Patient and Public Involvement and Engagement (PPIE) means involving and engaging people with research. People have perspectives based on their own experiences, lives, and expertise in their own conditions or those they care for, that might be different from that of researchers. PPIE means that they can use this experience and expertise to influence research, helping to make sure that it’s more robust and relevant.
We believe that publicly funded research should be shaped by those who will benefit from it. But we know that not everybody feels they have a chance to be heard. A fundamental part of our approach as a new NIHR Biomedical Research Centre is to reach, listen to and include the groups of people across the South West peninsula who might not have felt included or thought that playing a part in research was an opportunity open to them before.

Shaping our strategy

Our PPIE team have worked with two senior PPIE representatives, Rebeka Sultana and Catherine Johns, to help shape our strategy which we are delighted to launch today. The five core elements are Embed, Ensure, Improve, Develop and Involve. You can learn more about these elements and read the full strategy here. Catherine and Rebeka sit on our Management Board, helping to steer the strategic path of the BRC.

Catherine said: “I’m a passionate supporter of health research, innovation and evidence-based practice. I have a particular interest in biomedical research and experimental medicine – the essential building blocks for harnessing the scientific innovations that will lead to new and exciting treatments for patients – the “bench to bedside” approach that brings scientists and clinicians together to improve health and healthcare and that can bring about life-saving treatments.

I first became involved with the BRC in February 2021 as one of two patient, carer or public representatives. I joined a Working Group developing a funding bid to establish a new biomedical research centre in the South West. Our aim was to help ensure that the funding bid was designed with public, patient, carer and community interests in mind. I saw this as a very exciting opportunity to ensure that the patient and public voice was heard and embedded in the BRC from the start, and that the research delivered by the BRC is relevant to people both locally and nationally. PPIE can sometimes seem tokenistic, but I was welcomed as an equal member of the BRC Working Group (and subsequently BRC Management Board) and have always felt that my contributions are valued.

I was delighted when the bid was funded – helping to design PPIE training for researchers and develop communication strategies to inform patients and the wider public continues to be a very rewarding experience. I’m looking forward to seeing the impact of the BRC demonstrated through exciting new treatments and improved care for patients, together with an increased awareness in the wider community of the importance of translational research.”

Rebeka said: “I’ve always had an interest in contributing to improving the treatment and care of people with different health conditions and diseases. I have a background in biomedical sciences (pharmacy and cancer research) and am originally from south Asia. I often see the barriers that people from ethnic minorities, especially the older generation (and those who are not fluent in English) face; they’re often not aware of health research taking place. I’m passionate about using my experiences to help both researchers and the patients/public and making people aware of research and encouraging them to take part. I want to work with researchers to make their research more inclusive and diverse. Inclusion and diversity in research are crucial to ensuring treatment and care are tailored to everyone’s needs.”

Read the full strategy

Our PPIE Manager Jess Smith said: “It’s incredibly important that the public and people affected by research can have a say in the way that research is carried out. Their perspectives and experiences can make research more relevant and successful. We’re looking forward to working with people across the South West, sharing more about our research, and involving them so they can have their say and help to improve our research.”

Learn more about our PPIE work

Contact our PPIE team to learn how you can get involved

Learn about Exeter CRF