a young patient research ambassador who has been inspired to pursue a career in research as a result of his involvement in research as a young person
Please tell us a little bit about yourself
I was diagnosed with juvenile idiopathic arthritis and joint hypermobility at the age of three in 1996. Over the years, I have gone on to develop Crohn’s disease, a form of inflammatory bowel disease, and fibromyalgia. I cannot remember life before living with ill health. For as long I can remember, pain and fatigue have consistently been a part of my life, which I have just learned to deal with. As a young person, whose self-confidence had been understandably knocked, I often felt as though my voice was not heard – particularly among health professionals and teachers.
I have some fantastic examples of how certain teachers and health professionals supported and encouraged me, as well as some not so good examples. In 2012, after starting a degree in Biomedical Sciences at The University of Manchester, I found my way into research, after it was suggested by my former paediatric consultant that I should join the paediatric rheumatology clinical studies group as a patient representative. And as the saying goes, the rest has been history! Getting involved in research was the best decision that I have ever made. After meeting so many wonderful people who I have been able to learn from, I have grown in confidence and I have developed my own skills and competency in effectively self-managing my health. That moment in 2012 also ignited my passion for research, and ultimately led me to study a PhD in child health at the University of Leeds.
How did you first hear about Patient Research Ambassadors?
I first heard about the Patient Research Ambassador Initiative in late 2015, when Jennifer Preston at the NIHR Clinical Research Network talked about it while we were at another meeting. I had first met Jen in 2012 when I had joined the clinical studies group, and since then have worked with her on a number of projects. I was, of course, delighted to hear about the Patient Research Ambassador Initiative, excited about the opportunity to engage more people in research!
What made you decide to become a Patient Research Ambassador?
I became a Patient Research Ambassador because I am so passionate about research! Having taken part in research, as well as getting involved in shaping research, I have seen the benefit that research can have – not just on informing the future health and wellbeing of our country, but also personally. I feel that research has enabled me to have a voice, understand my health better, and opened doors to new avenues, that I would not have known about prior to getting involved.
Why do you think NHS research is important?
Research is the door to the future health and wellbeing of our nation. Without research, we would not have access to lifesaving and life changing care and treatment. Many healthy people may overlook this notion, but for those, like me, who rely on medicines in order to be able to walk and get around, I am eternally grateful to the researchers, health professionals and patients who contributed to the research which ultimately led to the license of such medicines. Now, I’m doing my bit to help researchers make their research the best it can be, and I hope that you will be able to do the same!
What activities have you been involved with?
The beauty about being a Patient Research Ambassador means that you can do as much or as little as you want – it is entirely up to you. If you are like me, and jump at the opportunity of getting involved in different things, you could end up doing a variety of wonderful and different things.
I am a member of the paediatric rheumatology clinical studies group, where I work alongside health professionals and researchers to prioritise research for young people with arthritis and their families. I have had the privilege of being a member of the research teams of over 15 projects, such as the TRials Engagement in Children and Adolescents (TRECA) patient and parent advisory group which aims to simplify the information people receive about research using digital tools, and the MobApp project, which aims to develop a mobile app for young people with arthritis and related conditions. I have also spoken at dozens of conferences around the world, highlighting the importance of patients in research. Examples include the International Children’s Advisory Network summit in Barcelona, and the European Paediatric Formulations Initiative conference in Lisbon.
In 2015, my involvement in research was recognised by The University of Manchester, when I was announced the winner of their inaugural Making a Difference Award of Outstanding Public Engagement Initiative!
What would you say to others who are considering getting involved in research?
Just do it! Life is too short to let opportunities pass us by, and getting involved in research is a truly wonderful experience, knowing that you are helping to make a difference to the world, while learning new skills and experiences for yourself. For me, one of the highlights of my involvement over the years has been the incredible people whom I have met through research – people who are now dear friends, and it is all thanks to research.
Innovative approaches to self-management in children with long-term conditions and their families (iSMART)
Inspired by my own experiences of living with long-term conditions as a child, and my recent experiences in research as a young person, I have created iSMART, a project that I am conducting as part of my PhD in partnership with a fabulous team of young people, families, health professionals, researchers and teachers. The aim of the research is to understand the ways in which existing resources help children with long-term health conditions to deal with the day-to-day management of their health, in partnership with the people living with and supporting them. From here, we aim to develop a new resource to enable children to improve the way they manage their health through learning, skills development and empowerment.