Childhood Rheumatology Conditions Research Open Day

We held a young patient and family research open day for people affected by rheumatology conditions in childhood (such as Lupus, Juvenile Arthritis, Uveitis and Scleroderma etc).

Sammy Ainsworth, Institute of Life Course and Medical Sciences

The purpose of the day was to open our doors to families and to allow the young people and parents to learn more about rheumatic disease and research. The day was a hands on fun-day with science activities, tours of our research centre laboratories and games, and an art workshop bringing research to life with the chance to ‘meet the scientists’.  We had the chance to talk to families to find out what is important to them and how we can help to share information and education about research and how they may want to be involved in our future projects.

The day included young people and their families, Patient and Public Involvement and Engagement (PPIE) leads, clinical members of the EATC4Children and the multi-disciplinary team.

All of our families were offered travel expenses, lunch and an informal opportunity to chat and get to know each other to share connections and support.

Embedding PPIE at an organisational level facilitated the opportunities for shared learning across different projects and accelerated skill development for both patients, their families and whole research teams. Crucially for our young patients, they were empowered and supported as they learnt about their condition, research and how to navigate life living with a rheumatic disease.

We were able to develop a strong partnership with the families who attended. All spoke highly and positively of the day. For some it was the first time that they had met someone in the same situation as themselves and they found the opportunity very helpful. Our older patients who returned to speak and offer advice on living with a rheumatic disease were given an opportunity to reconnect and to build public speaking skills. Our young families have spoken movingly since saying what a valuable opportunity it was to meet young people who were able to lead a successful and full life.