Poh-Choo: Patient and Public Involvement and Engagement (PPIE) is more than a requirement; it’s the heartbeat of relevant research.

Here we present the second in a series of four blogs, ‘The heart of creating change in research – perspectives of the public’. Poh-Choo Pang, a public contributor who supports our Enhancing Cohorts area of work and a member of our Public Advisory Group, talks about the importance of relevant research from a public perspective.

As both a researcher and a cardiovascular patient, I have witnessed the transformative power of PPIE in shaping the direction and impact of research. PPIE is not just a formality; it is a cornerstone ensuring our work resonates with the people it aims to benefit.

When patients and the public are integral to the research process, they bring unique perspectives often overlooked in academic settings. Their insights help refine research questions, identify meaningful outcomes, and ensure that findings are communicated in an understandable and actionable way. By collaborating with patients and the public, we’re not just conducting research, we are building a bridge between the research and the lived experience.

For example, the BHF Data Science Centre regularly organises workshops and focus groups where patients and the public can directly contribute to ongoing research projects. These sessions have led to significant adjustments in study designs and priorities, ensuring that the research addresses real-world concerns and needs. Additionally, the Centre’s public advisory group plays a crucial role in reviewing research proposals, providing feedback that ensures the studies are patient-centred and impactful.

Patient and Public Involvement and Engagement (PPIE) is more than a requirement; it’s the heartbeat of relevant research. It is a recognition that the ultimate goal of research is to improve lives. That can only be achieved by ensuring our work is grounded in the needs and experiences of those we serve. – Poh-Choo Pang

What’s next?

Ensuring our work remains relevant to patients and the public is crucial. We’re developing opportunities to identify what’s important to patients through prioritisation surveys, and the Kidney Data Science Catalyst is one example of this currently happening, with results due to be shared early 2025.  Our PPIE strategy will drive forward further public involvement and engagement opportunities helping us ensure our work maximises the value of health data to improve the lives of patients and the public.

Find out more

Read our recent article and case study to find out more about our approach to PPIE.