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 patient and public (lay) representatives
- Lay Representatives
A group of lay representatives has been convened through a process of open advert. Members of this group and involved in all aspects of an NCEPOD study from start to finish. If you would be interested in finding out how to become involved, please click here http://www.ncepod.org.uk/vacancies.html
- Steering Group
Two lay representatives are recruited for a term of 6 years (3+3) to comment on a wide variety of health care issues and who feel comfortable sitting on a high level board with representatives from medical and surgical colleges and associations.
One lay representative in a board of 6 (representing medicine, surgery, anaesthesia and nursing). The lay representative is currently the chair.
- 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.
- Commenting on draft reports
Steering Group lay representatives and patient (and lay) representatives on the study advisory group have two opportunities per study to comment on the draft report as it is written.
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.
- Embargoed reports
Four weeks before the launch of a report NCEPOD sends copies, under embargo, to all relevant stakeholders – such as colleges, NHSE etc. In addition to this, copies are also sent to any patient representative organisation/charity/support service that has involvement with patient groups that will be affected by the report, as well as more general patient groups like the Patients Association.
- Report launch
When NCEPOD publishes a report, we present the findings at a one day conference. The morning session allows us to tell the audience what we found, and in the afternoon 4-5 speakers are invited to come and comment on the impact they would like the report to have. For this event we ask someone from a patient representative group to come and speak, or a patient who would be comfortable presenting in such a forum with high-profile speakers.
- Media activity
At the time of the report launch we produce a press release covering the report. The language is always set to be understood by all readers and is proof read in advance of being sent by our lay representatives and one from our commissioners.
- 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 become involved with NCEPOD
If you are interested in helping NCEPOD please make contact via email at firstname.lastname@example.org or telephone us on 0207 2519060. If you would like to have a chat about the role, please contact Marisa Mason at the same telephone number or email@example.com
Payments for patient and public (lay) involvement
All patients and lay representatives are offered travel and subsistence expenses for each meeting they attend. Unfortunately NCEPOD are not in a financial position to offer payment to participate.
Opting out of patient information being used by NCEPOD
You do have the right to opt out of having your information used for the purposes of NCEPOD's studies. To read more information about this please click here.