What is Patient Involvement?

When we talk about ‘patients and the public’, we mean patients and potential patients of all ages; people who use health and social services; informal carers; parents and guardians; disabled people; members of the public.

When we talk about ‘involvement’ we mean patients and the public of all ages getting actively involved in the research process itself rather than being the participants or subjects of the research. Many people describe patient and public involvement in research as research that is done with or by patients and the public and not to, about or for them.


Why is Patient and Public Involvement important for health research?

There are many reasons why patient and public involvement is important for health research:

  • 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.
  • It is considered the right thing to do for patients and the public to be involved in any publicly funded research that may have an impact on them
  • It can help to improve the quality, relevance and impact of health research.


Why is Patient and Public Involvement important for you?

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 rheumatology 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?

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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