Why Lived Experience Shapes My Passion for Mental Health Research

This blog was written by Dr Lesley Booth MBE, PPIEP Lead, NIHR MH-TRC Mental Health Mission and PPIE Strategic Lead, MQ Mental Health Research

People often ask why I am so passionate about patient and public involvement, engagement and participation (PPIEP) in mental health research. As PPIEP Lead for the NIHR Mental Health Translational Research Collaboration (MH-TRC) Mission and PPIE Strategic Lead at MQ Mental Health Research, I have the privilege of working across the charity and research sectors to ensure that people with lived experience help shape the future of mental health research. The answer is simple. My passion comes from lived experience.

Recently, following a fall in which I fractured my femur, I found myself once again on the other side of the healthcare system—this time as a patient recovering from a significant injury. The weeks that followed gave me something we rarely allow ourselves in busy professional lives: time to stop, recover and reflect.

As I reflected on my journey, I realised how much my own experiences have shaped not only who I am as a person, but also why I care so deeply about ensuring that people with lived experience are genuine partners in research.

Living with two chronic illnesses, including scleroderma, and being an ostomate following surgery for Crohn's disease has taught me that illness is rarely just about the physical condition. Every diagnosis brings uncertainty. Every treatment affects daily life. Every setback can have an emotional impact that is often invisible to those around us.

My recent fracture reminded me of something I already knew but perhaps hadn't fully appreciated. Recovery is never simply about healing bones or managing symptoms. It is about rebuilding confidence, adapting to new limitations, accepting help when you would rather remain independent, and finding resilience when life suddenly changes direction.

These experiences have reinforced something I have believed for many years: healthcare is about much more than treating disease. It is about understanding the whole person.

That understanding is exactly what meaningful patient and public involvement, engagement and participation brings to research.

My own journey has shown me that researchers, however skilled and committed they are, cannot fully understand the day-to-day realities of living with a condition unless they work alongside those who do. People with lived experience hold knowledge that cannot be found in textbooks, clinical guidelines or datasets. They understand the questions that matter, the outcomes that make a genuine difference, and the barriers that often go unnoticed.

This is especially true in mental health research.

Living with long-term physical conditions has also shown me just how closely physical and mental health are intertwined. Chronic illness brings uncertainty, loss of confidence, changing identities and, at times, isolation. My recent injury only reinforced this. While my fracture will heal, it reminded me that recovery involves emotional healing as much as physical rehabilitation.

That is one of the reasons I feel so privileged to work in mental health research. Supporting researchers to work alongside people with relevant lived experience is not simply about improving research quality—it is about recognising that people's experiences, including the emotional impact of illness, are valuable forms of expertise.

As PPIEP Lead for the NIHR Mental Health Translational Research Collaboration (MH-TRC) Mission, I have the privilege of working alongside researchers, clinicians, charities and, most importantly, people with lived experience from across the country.

Every day I see how lived experience changes research. It challenges assumptions, broadens perspectives and ensures that research asks the questions that really matter to the people it is ultimately designed to help.

Having experienced the healthcare system as both a patient and now working within the research community gives me a perspective that bridges both worlds. I understand the language of research, but I also understand what it feels like to sit in a hospital bed wondering what recovery will look like, or to live with conditions that become part of your everyday life.

That perspective drives everything I do.

My role is not simply to champion involvement. It is to advocate for meaningful involvement that genuinely changes research. I want to help create research that asks better questions, develops interventions that matter to people, and ultimately improves both physical and mental health outcomes.

My own experiences have taught me that no one should have decisions made about them without them. The same principle applies to research.

Research is stronger when it is informed by those who live with the conditions it seeks to understand.

My recent period of recovery has reminded me that lived experience is not something we leave behind. It continues to shape us, teach us and influence the way we see the world. For me, it has strengthened my commitment to ensuring that the voices of people with lived experience are heard, respected and embedded throughout mental health research.

Because lived experience is not an optional extra. It is evidence. It is expertise. And it is one of the most powerful tools we have for making research more compassionate, more relevant and more impactful.

Every conversation I have with someone willing to share their story reminds me why this work matters.

Their experiences deserve to shape the future of mental health research.

Just as mine continues to shape me.

As both PPIEP Lead for the MH-TRC Mission and PPIE Strategic Lead at MQ Mental Health Research, I am fortunate to work with an extraordinary community of researchers, clinicians, charities and, most importantly, people with relevant lived experience. Across both roles, my focus is the same: to share good practice, advocate for meaningful involvement, build partnerships and create opportunities for lived experience experts to influence research from the very beginning. Whether supporting a national research collaboration or working through a mental health research charity, my aim is to ensure that lived experience is recognised as expertise and embedded throughout the research process, not added as an afterthought.