Last week we welcomed researchers from across the UK, from PhD students to early career group leaders for a day focused on one vital aspect of research: the patients.
This event co-designed and delivered by our dedicated parent and patient group, The CLUSTER Champions, was a fun and interactive day designed to put patients front and centre of future research priorities. In light of our recent publication, sharing CLUSTER’s approach to Patient and Public Engagement and Involvement (PPIE), it was a fitting time to bring the community together for a day dedicated to just that.
We kicked off the day with a powerful talk from Emily Earle, CLUSTER Champion and CCAA representative, who highlighted the value and importance of PPIE and the benefits it can bring to all parties. The youngest of our CLUSTER Champions, Eilean MacDonald, continued this thread to reinforce the patient experience, sharing her own moving story of JIA as well as that of 5 brilliant little champions of JIA- Saskia, Zak, Sfiyah, Harriet and Conn. Take a look at their stories here.
Closing the patient session was Sophie, speaking about her own experience of living with JIA and the many challenges it brings. From the bad memories of taking methotrexate from a young age (the most common first drug in kids with JIA) to the feeling that she had to grow up faster than her peers with the seemingly endless hospital visits and responsibility of managing her own medication. It’s safe to say there wasn’t a dry eye in the house!
Then the hard work for the researchers began who cycled round workshops, chaired by Catherine Wright (CLUSTER Champion and Versus Arthritis representative), each with a different aspect of PPIE to cover, to gain and share skills and resources.
A rapid research showcase followed, chaired by Kerry Leslie (CLUSTER Champion) who challenged the researchers to summarise their research in just 2 minutes for a lay audience. It was fantastic to see the breadth of research going on across specialties working towards a shared goal to better the lives of JIA/JIA-Uveitis patients.
The final challenge for attendees: The Research Grant Call Dragon’s Den. Our teams of researchers were tasked with speed writing a PPIE plan for a chosen research project, putting all the skills and advice they had learnt into action. After sufficient grilling by the Dragons, the winning team was crowned!
This really was a rare but hugely valuable opportunity to bring researchers and patient/parent partners together to embed meaningful PPIE in the future leaders of JIA research.
Congratulations and thanks to all our CLUSTER Champions for their work behind the scenes and on the day to deliver such a fantastic event and to all the patients and families who shared their stories.
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