What is the YOUR RHEUM?
Your Rheum is a group for people in the UK aged 11-24 years who have a diagnosed rheumatic condition. Your Rheum provides an easy way for young people to understand and get involved in rheumatology research that is relevant to them. For example understanding why certain medications have side effects or developing tools such as website to help young people manage their condition.
The aim of this group is to make sure that the research that happens about conditions such as JIA, Lupus, Fibromyalgia,or Scleroderma means something to the young people it affects, reflecting what’s important to them and not just what is important to the researchers.
Your Rheum has been set up by the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR). BANNAR is a group of rheumatology professionals (such as doctors and researchers) from across the UK who undertake research into rheumatology conditions. BANNAR is funded by Arthritis Research UK.
The Public Programmes Team, support BANNAR in organising and facilitating the group. The Public Programmes Team is a small organisation based in Manchester who work on projects that help get patients and the public involved in the wide range of healthcare research going on across the country.
Why is it important that Young People are involved in research?
If someone was to go and redecorate your bedroom and they did not ask you how you wanted it doing, how would they know what to do to make sure it was right for you, and that you liked it?
This is the same with research, there is a lot of research being done in rheumatology, however if researchers do not ask people with rheumatic conditions how best to do their research, how can they be sure they are doing it in the best way or that they are investigating the most important issues for you?
Researchers do not always have experience of the health condition, illness or disease that they are researching. It is important that patients, service users and carers provide their personal experiences and perspectives to guide the design and delivery of health research.
Involving patients and the public in research is so important to ensure research is relevant, fits your needs and is being conducted as effectively as possible.
There is also a lack of young people’s opinions in the area of rheumatology research and so getting involved in YOUR RHEUM is a great opportunity to be amongst the first young people telling researchers what you want and need.
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