Patient and Public Involvement at the National Amyloidosis Centre – The UK Amyloidosis Advisory Group (UKAAG)
Patients are at the heart of everything we do at the National Amyloidosis Centre. We want to continue to improve both the clinical care we provide and our patients’ overall experience in the Centre. We aim to do this by listening to what our patients tell us and by putting their suggestions into practice.
Involving patients and the public in planning, monitoring and developing health services and associated research is good practice, and we aim to achieve this through meaningful involvement and the development of partnerships between patients, carers and healthcare staff.
A group comprising members of the public and patients, The UK Amyloidosis Advisory Group (UKAAG), was formed in 2013 to work with the doctors, scientists and other healthcare professionals at the National Amyloidosis Centre.
UKAAG aims to support the NAC clinical service and its research objectives by:
- meeting two to three times a year for discussion
- reviewing NAC patient information including the following:
- patient information sheets
- patient information website
- NAC newsletters
- advising the NAC regarding composition and implementation of patient surveys
- advising and assisting the NAC regarding establishment of patient support services
- reviewing research proposals from the NAC
- assisting the NAC with fundraising activities dedicated to amyloidosis
- giving its views on research proposals alongside clinicians, methodologists, scientists, and public health and other professionals
- taking part in clinical trials and other health and social care research studies, not just as subjects but as active partners in the research process
- publicising results
William de Segundo