PPIE Driving research with public and patient voices at the heart

Stephanie Ivie is a research team leader within our Surgery & Oncology Research Team at Imperial College Healthcare NHS Trust. She has just finished a six-month fellowship with the NIHR Imperial BRC Patient Experience Research Centre (PERC), which looks to involve patients and the public in shaping and designing research to ensure it meets the needs and priorities of the North West London population.

Stephanie shares her experience of the fellowship here.

What is the NIHR BRC Imperial Patient Experience Research Centre?

PERC is a core facility of the NIHR Imperial BRC. It is a multidisciplinary group of clinicians, public health specialists and social scientists who come together to combine their strengths in quantitative and qualitative research methods. It aims to promote active communication between patients, researchers and clinical staff to address real problems through research and to improve the quality of healthcare and the impact of translational research.

Why did you initially apply to become an NIHR Imperial BRC PERC fellow?

I originally applied due to a personal observation in my Imperial College Healthcare role that the diversity of our research participants was low, despite the varied population that our hospitals serve in North West London. This disparity inspired me to explore issues in research design, ethnic diversity and inclusivity and led me to discover the importance of patient and public involvement and engagement in breaking down these barriers. This newfound interest aligned perfectly with the aims and knowledge of PERC and the fellowship meant that I could learn about these topics while also providing an important insight through my experience in research delivery as a research team leader.

What did the fellowship look like day to day?

The fellowship role is varied and flexible depending on your interests, but for me, I mainly split my time between helping with developing questions to ask advisory and focus groups and promoting research at roadshows and community events. This involved administrative work, public speaking and a lot of collaboration and communication between teams both within and outside of Imperial.

What are the benefits of actively involving patients and the public in research?

Involving patients and the public at earlier stages means that the research aims can be tailored to be relevant and meaningful to the target group, which not only increases enrolment and compliance within the study, but also improves the data quality, meaning the research project is likely to have a greater impact.

What have been some of your key takeaways from the fellowship?

A key takeaway is the difference between patient and public engagement versus involvement. I had always believed these terms to be interchangeable, but during my time with the PERC team, I realised that engagement, such as sharing study results via seminars and research cafés, differs compared to involvement and co-production where the patient and public members are directly part of the “thinking team” where research is carried out “with” them, not just “about” them.

 Why might you encourage other Trust staff to apply for this fellowship in the future?

This is a great opportunity to step outside of your comfort zone and experience a team that not only encourages you to think differently but also supports patients, the public, students and academic researchers uniquely.

Finally, what has the PERC team been able to learn from you?

I believe that my nine years’ experience in clinical research and my current Trust role as a research team leader have made me useful to the PERC team. My current knowledge involves a grounding in how research should be delivered, portfolio management and the nuances involved with set-up, engaging with stakeholders and communicating with clinicians as well as patients within an NHS setting. This background gives a complimentary perspective when compared to the work which is delivered by PERC, and I hope that I can continue to collaborate with the team beyond my fellowship!