Information for Patients and the Public

The EURO EWING Consortium provides information on the activities of the EEC and Ewing's Sarcoma to patients and the public.

What do we mean by 'patient / public involvement'?

Patient and public involvement is a term used by the UK medical research community. 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'. In other countries, the term 'patient expert' is used.

Patients that take part in a clinical trial are called 'participants'.

How are patient experts involved?

Currently, we have patient experts representing the UK, Italy, France, Germany, Ireland and Norway. We hope in future to have patient and public involvement from more countries.

So far, patient experts have:

reviewed and commented on patient information sheets.
Influenced the protocol design for the rEECur trial.
Been involved in a prioritisation exercise on patient and public involvement activity.
Joined discussions on future trials for a specific group of Ewing sarcoma patients that have a poor prognosis.
Given input into how patient experts can help to improve bio-banking.
Represented patients and carers at international meetings and written meeting reports.
Given input on web pages, aimed at patients and carers, that will update trial participants on progress.
Publicised the EEC and patient and public involvement in the EEC to parents and carers.

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