Would you like to get involved in helping to influence research into medicines for children with rheumatological conditions in the United Kingdom (UK)? If so, there are vacancies on the UK’s paediatric rheumatology clinical studies group for patient, parent and carer representatives.
The National Institute Health Research (NIHR) Clinical Research Network (CRN): Children and Arthritis Research UK work in partnership to support the NIHR CRN: Children/Arthritis Research UK Paediatric Rheumatology Clinical Studies Group (CSG). The CSG is responsible for addressing research priorities across the country, and for supporting the development of new research into medicines for children with rheumatological conditions. The CSG believes that all children and young people in the UK with a rheumatological condition should be given the opportunity to take part in high quality research, in order to improve the care and outcomes for them and young people with similar conditions in the future.
The role of the CSG
The Paediatric Rheumatology CSG has a dual role of advising and working closely with both the NIHR CRN: Children’s theme and Arthritis Research UK in paediatric and adolescent rheumatology and musculoskeletal disorders, in developing and supporting a comprehensive portfolio of research studies. Advice from CSG members contributes to improving the quality, deliverability, and impact of research supported by the NIHR CRN, Arthritis Research UK, and other research funders.
The CSG has the following remit:
- To be responsible for developing and overseeing its portfolio of research studies;
- To propose and develop new clinical trials and other well-designed studies;
- To consider studies proposed by others and advise the NIHR CRN: Children’s theme and Arthritis Research UK on study feasibility and research priorities;
- To provide specific advice to researchers;
- To ensure that children, young people and their families are involved in all aspects of research, from prioritisation through to dissemination.
The CSG holds regular meetings per year, involving two face-to-face meetings in London, and up to 12 teleconferences per year. The CSG also supports a number of topic specific groups (TSGs) and other related meetings from both CRN: Children and Arthritis Research UK. Members of the group are often involved in a number of research projects too, but this is at the discretion of individual members, as we recognised that everyone is busy with their own lives – particularly young people and their parents/carers!
Say yes and apply to join the CSG
The CSG is currently seeking patients, parents and carers to join its membership to help ensure that studies on medicines for children with rheumatological conditions are developed and carried out to best meet the needs and wishes of young people living with these conditions, and their families. The CSG are particularly interested to receive applications from patients, parents and carers who fulfil the following criteria:
- Experience of looking after a child with a rheumatological condition or experience of living with a rheumatological condition during childhood*;
- Excellent communication skills;
- Experience of working in groups or committees;
- The time to participate in two face-to-face meetings (in London) and up to 12 monthly teleconferences per year (the 1st Monday of each month from 4.30 pm until 5.45pm), though there is some flexibility here in case you cannot attend all of the meetings.
*Some examples of rheumatological conditions include: juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus (jSLE), juvenile dermatomyositis (JDM), vasculitis, and scleroderma/systemic sclerosis (SSC).
Patient, parent and carer representatives of the CSG are offered individual support and mentorship in their role, and receive an attendance fee and expenses for agreed meeting attendance. The appointment is for three years in the first instance.
Having been involved as a patient representative on the CSG for five years, I have found this opportunity incredibly rewarding – both personally, and through witnessing the changes that have happened over the years. My appointment to the CSG in 2012 was my first involvement opportunity in research. By taking the courage to apply, and venturing into the unknown, this opportunity really has changed my life. It has enabled me to meet so many individuals within the rheumatology community, get involved in a variety of research projects, and even sparked my interest for research, which led me to apply for the PhD that I’m currently studying – so ANYTHING is possible!
If you are interested in serving on the CSG, please submit a short CV and covering letter outlining how you meet the criteria listed above to NIHR CRN: Children at firstname.lastname@example.org by Friday 15 September 2017.
Delivering person-centric approaches to research
Embedding the patient, parent and carer voice into research is integral to the role of patient, parent and carer representatives with the CSG, and it is something that I am very passionate about. There are currently two patient representatives on the CSG: myself, a young person with JIA and fibromyalgia; and Catherine Wright, who was diagnosed with JIA at a young age and now works with Arthritis Care Northern Ireland as their Family and Youth Work Manager.
Research priorities that meet the needs of children, young people and their families
Along with the rest of the CSG, the patient, parent and carer representatives have developed models for optimising lay involvement in the CSG’s activities. The CSG have also developed specific research priorities that were identified by children, young people and families. These have been published in the CSG’s latest research strategy. In addition, researchers are strongly encouraged to involve patients, parents and carers from the outset in study development, and it is now a requirement for many funding bodies to ensure that appropriate patient and public involvement is embedded into all grant applications. Researchers must plan appropriately, and ensure that involvement is meaningful, rather than a tick-box activity.
So much has already been achieved in the nine years that the CSG has been established. The evolution of patient, parent and carer involvement in research has progressed rapidly; however, there is still room for improvement. More collaboration, tighter communication, and better involvement of patients, parents and carers in research is still needed, in order to enhance the quality of research findings, deliver better interventions, and support a more holistic approach to health and wellbeing in the UK, all of which will enhance the quality of life for children and young people with rheumatological conditions.