UCL Cancer Institute


Patient and Public Involvement and Engagement

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 more about how patient experts have been involved in the EEC so far and why they think it is important.

Read Ornella Gonzato's (EEC PA from Italy) paper about patient advocacy.