One of the aims of the EURO EWING Consortium (EEC) is to bring patient and public involvement activity into the work of the EEC including:
dissemination of information
oversight of research activities and
strategic priority setting for next generation research.
Patient and public involvement is a term used by the UK medical research community but in other countries, the term patient advocacy group (PAG) is often used.
In the UK, a person who is involved in research in this way is called a 'PPI representative' or a 'consumer representative'. In other countries, the term 'patient expert' is used. Patients that take part in a clinical trial are called 'participants'.
Patient and public involvement and engagement are defined as:
- Involvement - where members of the public are actively involved in research projects and in research organisations.
- Engagement – where information and knowledge about research is provided and disseminated.
Read Ornella Gonzato's (EEC PA from Italy) paper about patient advocacy.