The Paediatric Heart Disease Patient and Public Involvement Group launched on 11th December, 2018, in Partnership with Evelina Children’s Heart Organisation (ECHO).

The group, consists of adolescent heart disease patients, parents and carers of children with heart conditions and is set up to support researchers and clinicians in the NHS and its University partners to help deliver high quality research into diagnosing and treating children and young adults with heart disease. 

The group serves as a forum to guide clinical research, make it more effective, efficient, accessible and patient focussed. We welcome researchers at various stages of their research development, from initial research ideas, preparing for research ethics submission and research grant proposals and to help overcome challenges in their study recruitment. 

In this first PPI meeting, Dr Michael Carter presented his research on understanding the recovery mechanism after heart-lung by-pass surgery in children in order to improve clinical outcomes.  This was well received with all members contributing enthusiastically and giving our research considerable food for thought! In addition, Drs Phuoc Duong & Alessandra Frigiola, discussed benefits of exercise to patients with congenital heart disease, emphasising that exercising to their own capabilities it crucial. The positive message of empowering patients to take ownership of their own body, which ultimately helps them to lead a normal life was well received by the group. Feedback from the group considered the effect of different attitudes from a range of age groups and availability of other monitoring technologies as factors and will help our research fine tune their studies.


The above photo was taken during the first meeting. Refreshments are provided!


If you would like to know more or are interested in joining the group: please email

Download the terms of reference for the group here.