EDIEventPPIE The value of PPIE for clinical research: An NIHR Imperial BRC Community Partner perspective
BRC community partners play a crucial role in shaping the work we do. Suzanne Bell tells us about her recent experience of working with a group of MSc students to discuss projects they are working on. The event revealed a profound impact on researchers as well as the public and patient partners.
On 30th January I took part in the Science Communication workshop for MSc students along with other cancer patient advocates. For about 18 months, I’ve been a part of the PPIE programme (Public and Patient Involvement and Engagement) for Imperial College London. I had no idea that these kinds of programmes existed. It was only through a chance meeting with a neighbour at Maggie’s Centre, West London, that I became involved. Her enthusiasm sparked my enthusiasm. I’d had a lengthy career in arts and culture. I founded a charitable organisation that improved access to live music, which puts disabled people’s lived experiences at the heart of societal change. After being diagnosed with Breast Cancer six years ago and subsequently leaving my senior position at the charity to maintain a healthier work/life balance, I now had the opportunity to give my unique perspective as a disabled person living with a cancer diagnosis.
Engaging directly with the students from Imperial College London is my favourite activity within the PPIE programme. I get to see first-hand how the students come to understand the real-world impact of their research projects. One patient summed it up as follows:
“As a cancer patient advocate, contributing to this event led by the Imperial CRUK Nurse, PPIE-focused session reinforces just how valuable lived experience is in shaping meaningful and relevant research.”
This was my third Science Communication workshop. The first time that I took part, I worried that I wouldn’t be of use to the students because I failed all my science exams at secondary school. However, it turned out that I was the perfect person for the students to practice on because you don’t need to know about the scientific processes or any jargonistic terms that support cancer research. As patients, our task is to listen to the students giving their research project summaries (known as ‘Lay Summaries’) and to give feedback on what we’ve understood and not understood. One PPIE advocate sums up the importance of this:
“I wanted to support Cancer MSc students in developing their ability to communicate complex research in a way that is meaningful and accessible to patients and the wider public. As a patient representative, it was important to contribute a non-academic perspective and help students test whether their lay summaries and presentations truly made sense to someone without a scientific background.”
Throughout my career, I’ve worked to encourage the use of ‘Plain English’ in all communications because written English with all its jargon and complex meanings can be a barrier to understanding for many people. I also encourage the students to include some pictorial representation – diagrams, infographics, etc, because it can help bring their research to life as well as meeting people’s different learning styles.
These students come from across the globe and when I talk with them, I’m always struck by their intelligence and their passion for helping cancer patients. One patient advocate describes the experience of working with the students as follows:
“I was both honoured and humbled by meeting these lovely young people – it is obvious to me that they are aware of the gravity of the matters they are looking into, and I thought they managed to be both curious and respectful in relation to my position as a patient.”
The patient advocate makes a crucial point about being respectful. The workshop can give rise to a lot of complicated emotions around living with, or beyond, cancer. It might mean that patient advocates recall trauma. Some of the patient advocates have been living with incurable diagnosis for a length of time and one of those advocates describes how they benefit from talking with the students:
“The opportunity to do something useful and positive with some of my most upsetting, frustrating, and traumatic experiences is really valuable to me. Supporting research, education, and learning with my experience of the disease and its treatment is truly transformative…probably better than therapy!”
The students echo the positive impact:
“For me, it’s about listening to your [the patient advocates] stories and how much our research makes positive changes for you [the patient advocates]. We sometimes forget in the lab what we’re trying to do and achieve.”
“It was grounding, motivating and heartwarming. There was so much enthusiasm [from patients] for the projects. I’m going to carry this moment forward to the rest of my Masters.”
Co-production between clinical research students and their tutors, patient advocates and other key medics lays the groundwork for future improvement in the detection and treatment of cancers. These improvements can be significant. Some patient advocates said they felt privileged to be part of the engagement with students from the outset of their careers. They also emphasised how embedding PPIE within research training plays a vital role in developing responsible, reflective researchers of the future. They felt that the workshops were an essential part of being able to deliver research that serves the people who it aims to benefit. For others, it reinforced the importance of collaboration between researchers and patients. It demonstrated how engagement, if it’s carried out in a meaningful way, enhances mutual understanding.
This last quote sums up why everyone turned up to the workshop with intent to learn, support and understand:
“The MSc/PHD students of today are the researchers of tomorrow, whose predecessors’ work will have contributed to the medical breakthroughs that saved my life.”
Thanks to Kelly Gleeson, Lead Nurse at Imperial CRUK Centre, and her team for bringing everyone together for this workshop.
By Suzanne Bull MBE
