• Introducing Wendy Costello: the first patient advocate appointed to the NCRC Scientific Advisory Committee

    The NCRC is delighted to announce that Wendy Costello has been appointed to serve on the National Children’s Research Centre (NCRC) Scientific Advisory Committee (SAC). Wendy is a long-time advocate for children and adolescents with Juvenile Idiopathic Arthritis (JIA), the most common rheumatic disease affecting young people. She is the co-founder and chairperson of the Irish Children’s Arthritis Network (iCAN), a member of the UCD Centre of Arthritis Research steering group committee, a board member of the European Network of Children with Arthritis (ENCA) and the Autoinflammatory Rare Disease Council, and the ENCA representative on the Paediatric Rheumatology European Society council. Wendy is also a recent graduate of the IPPOSI (Irish Platform for Patient Organisations, Science and Industry) patient education programme, a course designed to enable and encourage patients and patient advocates to become more actively involved in health research.

    On her start in patient advocacy and research, Wendy commented “My daughter Niamh was diagnosed with JIA at the age of 3. I gave up work to be her full-time carer. I met Dr Orla Killeen when she came to Our Lady’s Children’s Hospital, Crumlin to set up the paediatric rheumatology service. We chatted about setting up a support network and I met with other parents and together we set up iCAN. After 5 years of working tirelessly on raising awareness of rheumatic diseases in children, supporting families and advocating for better services, I decided to apply for the IPPOSI patient education programme and by doing this my interest in research started”.

    Wendy is currently involved in a number of research projects, including Teens Taking Charge/iPeer2PeerThis NUIG project will test an Irish adaptation of a Canadian online programme for managing JIA combined with a novel peer mentoring system” and WebParCThis is a study looking at a website specifically designed for parents caring for children with JIA. It is designed to work alongside the clinical care the child receives and aims to provide parents with information about JIA and its treatment”.

    The NCRC is conscious of the importance of the patient voice in paediatric research. Patient and Public Involvement (PPI) in health research is when researchers work in partnership with patients and patient advocates to define priority research areas, plan and manage studies, and communicate study findings. The SAC is a critical component of the NCRC’s grant assessment process, providing an expert, constructive, and objective critique of the applications under consideration for funding. Wendy is the first PPI advocate appointed to our SAC. On her appointment, Wendy commented “PPI is something that makes me nervous and I’m sure all researchers. I don’t like to be the PPI member of the team, I want to be a member of the team, yes my skills are different, I am a parent of a child living with a chronic condition but I think my contribution will make a difference and is vitally important. I want to make research more accessible to the general public. I want them to understand projects in lay man terms. I intend to do my bit to drive it forward working in partnership with this amazing, motivated team in the NCRC”.