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There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

I was diagnosed with lupus at the age of 14 following symptoms of joint pain, muscle weakness, fatigue and more. I received a quick diagnosis, but the years since have been bumpy to say the least! After countless medications, flares and hospital stays, I am now 20, have transitioned to adult services, am in my final year of university and run a charity dedicated to supporting young people with ‘invisible illnesses’. Through my own experience and those of other young people, I have found that while living with chronic illness is different for each person, many issues we face are the same. For many, the hidden nature of illness can be the most challenging part. Similarly, being a young person with a chronic illness brings a unique experience, as young people try to navigate all the ordinary challenges of growing up, with added stress, difficulties and responsibilities. One way in which a condition may be a ‘hidden’ struggle is through the simple fact that many symptoms cannot be observed. While I’ve struggled with inflamed joints and breathing difficulties, often the most debilitating symptom is fatigue. It impacts my ability to work, to focus on my studies and socialise with friends but it is often glossed over. While my other symptoms can be measured in blood tests and scans, fatigue is more difficult to pin down or quantify, but this does not mean it causes me any less difficulty. These struggles can have a big impact on someone’s mental …