Around three million people in the UK have kidney disease

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What is patient involvement?

What is patient involvement?

Patient involvement is people affected by kidney disease having a guiding voice in shaping research. INVOLVE (part of the National Institute for Health Research) defines patient involvement as “research being carried out ‘with’ or ‘by’ patients rather than ‘to’, ‘about’ or ‘for’ them.

Patient involvement is vital to advancing research. Ultimately, research is about improving patient care. Patients need to be involved so projects and trials are designed and conducted to make sure this happens.

Patient engagement

This is activity where we are creating a dialogue with patients sharing information and knowledge of kidney disease, research and the charity.

Patient involvement

This is where patients are directly involved in research and research organisations.

Patient participation

This is where patients are taking part in a research project or trial.

Why get involved in research?

"It is because of research that I am still alive. Without the work by researchers and patients collaborating over many decades to find new ways of doing things, I couldn’t have been treated for Goodpasture’s syndrome, been kept alive on dialysis until I could receive a kidney transplant, and spent the last 12 years living my life. But the treatments are not perfect.

There is still more to do. As experts in living with kidney disease we have a huge role to play in helping research to be better, to change policy and to improve the lives of people living with kidney disease."

Sarah Harwood, kidney patient

Sarah Harwood, kidney patient
Sarah Harwood, kidney patient

What are the benefits of being involved in research?

  • Influence research that can change and improve healthcare in the future
  • Find out more information about your condition
  • Gain understanding about what you have been through
  • Learn new skills through
    • Charity work
    • Being part of a research group
    • Attending conferences and workshops
    • Giving presentations
    • Interviews
    • Publications
  • Help make a difference.

How can I be involved in research?

There are so many ways to be involved and use your experience to inform and improve research.

  • Be a participant in a research trial
  • Be an advisor
  • Help raise awareness
  • Fundraise for us
  • Lend your voice to research – have your say through consultations

Kidney Voices for Research

Join our paitent community and add your voice to the fight against kidney disease.