Introduction

NCEPOD recognises the importance of needing study specific patient involvement, by which we mean those patients who have been directly involved with the disease/procedure or specialty being reviewed. However, we also need to combine this with input on a more general level with regard to healthcare issues which is provided by lay representatives.

How we involve patients, parents, carers, and the public at NCEPOD

• Patient and Public Involvement (PPI) group

A PPI group has been created for patients, parents, carers, and members of the public to be involved in all aspects of NCEPOD studies from start to finish. Please click here for more information on how to apply: . Please click here

• Steering Group

Two lay representatives are recruited for a term of 6 years (3+3) to comment on a wide variety of healthcare issues and who feel comfortable sitting on a high-level board with representatives from medical and surgical colleges and associations. PPI members will also be given to opportunity to join.

• Trustees

NCEPOD board of Trustees oversees the charitable and corporate governance of the organisation.

• Study Advisory Groups

For each new study, a patient representative is recruited to the small study advisory group that designs the study. This patient is often recruited from an organisation which represents the specific topic of interest. In addition to these representatives, a small pool (3 or 4) of lay representatives are recruited for a set term of a maximum of 6 years, who take part in many Study Advisory Groups, providing continuity of NCEPOD knowledge and additional support for the patient representative who are only recruited on a study-by-study basis. PPI members will also be given to opportunity to join.

• Commenting on draft reports

Steering Group lay representatives and PPI members have two opportunities per study to comment on the draft report as it is written.

• Reports

All NCEPOD reports are written in the simplest of language to ensure that they can be read by patients and the public, not just by the professionals expected to act on the recommendations. A glossary of terms is provided.

• Patient leaflets/information
For some studies we have been able to produce a list of questions that patients should ask about their condition when going for treatment. However, due to the nature of our topics this is not always possible. Therefore, to supplement our reports, our website has a list of relevant patient organisations, by study, that could be contacted for further information.

How to get involved today

Join our Patient and Public Involvement (PPI) group

Click here to view our PPI advert
Click here to view our information sheet

For more information, please contact Paige Kolasinska, PPI Lead on 0207 251 9060 or email engagement@ncepod.org.uk.