Public and Patient Involvement and Engagement (PPIE) ensures that research is shaped by those it directly impacts, enhancing its relevance, accessibility, and real-world application. As PPIE is now a requirement for most research funders, developing expertise in this area is essential for all researchers to ensure their work is both successful and aligned with patient and public needs.
Equipping PhD students with the skills and tools to conduct high-quality PPIE lays the foundation for inclusive and impactful research throughout their careers. Hands-on experience is particularly valuable - not only to reinforce learning but also to build confidence in effectively integrating PPIE into their work. Our PhD students have the opportunity to meet and engage with patients through the BRC’s Skin Disease, Oral Disease, and Immunogenomics theme’s patient advisory group as well as taking part in our regular events that are directed at the public, so their research is close to the patients and public from the start.
Georgie Holt and Amy Robinson, members of the NIHR Newcastle BRC Skin Disease, Oral Disease and Immunogenomics research theme, highlight the benefits and challenges of engaging with patients and the public:
“I’m a final-year PhD student at Newcastle University, specialising in rare disease skin genetics. My research focuses on understanding why certain skin tumours form, with the aim of developing treatments to improve patients' lives. As a group, we are committed to raising awareness, influencing policy, and making testing and screening more accessible to better support patient care. Last year, I had the privilege of attending the Lynch Syndrome UK National Conference at Warwick University, where I had the honour of presenting our research on Lynch syndrome-related skin tumours to an audience of both scientists and patients. This annual event brings together people affected by Lynch syndrome, their families, and healthcare professionals to share experiences and discuss the latest research on the condition. One of the biggest challenges I faced was translating complex scientific concepts into language that non-experts could easily understand. Despite this, the conference was an invaluable reminder of the importance of placing patients at the heart of research. It allowed me to see firsthand how our work is directly impacting patients' lives, reinforcing my passion for the work I do and the real-world difference it can make. This experience highlighted the profound value of keeping patients central to everything we do as researchers.” - Georgie Holt, PhD Student
“I’m a final-year PhD student at Newcastle University, specialising in rare disease skin genetics. My research focuses on understanding why certain skin tumours form, with the aim of developing treatments to improve patients' lives. As a group, we are committed to raising awareness, influencing policy, and making testing and screening more accessible to better support patient care.
Last year, I had the privilege of attending the Lynch Syndrome UK National Conference at Warwick University, where I had the honour of presenting our research on Lynch syndrome-related skin tumours to an audience of both scientists and patients. This annual event brings together people affected by Lynch syndrome, their families, and healthcare professionals to share experiences and discuss the latest research on the condition.
One of the biggest challenges I faced was translating complex scientific concepts into language that non-experts could easily understand. Despite this, the conference was an invaluable reminder of the importance of placing patients at the heart of research. It allowed me to see firsthand how our work is directly impacting patients' lives, reinforcing my passion for the work I do and the real-world difference it can make. This experience highlighted the profound value of keeping patients central to everything we do as researchers.”
- Georgie Holt, PhD Student
“Specialising in rare disease, I am a second year PhD researcher at Newcastle University. I am developing a 3D skin model in the lab that will be used to model the rare inherited skin barrier dysfunction condition, ichthyosis. I was first inspired to pursue a career in rare disease research by attending the Newcastle University organised ‘Genetics Matters’ rare disease day event when I was still at school. Now, through my BRC funded PhD, I presented my own research at this annual event. Genetics Matters is a fantastic opportunity for the public to meet rare disease patients, charities, clinicians and researchers alike through a series of talks, engaging conversations and table based interactive activities. Public understanding of rare disease is often lacking due to a deficiency of awareness. By inviting the public to engage with rare disease research directly, it empowers communities to come together to support the patients and inspire the next generation to pursue careers in science and medicine. At events like these, the public can more easily relate to science in both an accessible and enjoyable way. Rare disease research is a long, difficult journey but to see how many people rally together to support what we do, provides rare disease patients with hope.” - Amy Robinson, PhD Student
“Specialising in rare disease, I am a second year PhD researcher at Newcastle University. I am developing a 3D skin model in the lab that will be used to model the rare inherited skin barrier dysfunction condition, ichthyosis. I was first inspired to pursue a career in rare disease research by attending the Newcastle University organised ‘Genetics Matters’ rare disease day event when I was still at school. Now, through my BRC funded PhD, I presented my own research at this annual event.
Genetics Matters is a fantastic opportunity for the public to meet rare disease patients, charities, clinicians and researchers alike through a series of talks, engaging conversations and table based interactive activities. Public understanding of rare disease is often lacking due to a deficiency of awareness. By inviting the public to engage with rare disease research directly, it empowers communities to come together to support the patients and inspire the next generation to pursue careers in science and medicine. At events like these, the public can more easily relate to science in both an accessible and enjoyable way. Rare disease research is a long, difficult journey but to see how many people rally together to support what we do, provides rare disease patients with hope.”
- Amy Robinson, PhD Student
Find out more about how we involve patients and the public in our research. Resources like the NIHR’s dedicated ‘Be part of research‘ website, the Newcastle Hospitals’ ResearchPlusMe registry, the VOICE Network or NIHR BioResource offer opportunities to get involved in research.