Healthwatch Birmingham & Solihull

Why and how NCEPOD uses patient data without consent

Can you help with the below request ?

For NCEPOD to carry out their work they are given permission to collect and use patient identifiable data under very strict conditions of confidentiality and data security by the Health Research Authority in England and Wales. This support has been in place for 23 years, and they undergo an annual review by them.
 
As part of their own process to support this they carry out the below survey on how people view NCEPOD’s data collection/processing methods to try make sure there is nothing they are overlooking. They have asked for our help with this.

Organisation: NCEPOD

Who for: patients/parents/carers/lay/public stakeholders 

You can help by filling in and sharing the short public survey at Why and how NCEPOD uses patient data without consent

The closing date for the survey is not yet confirmed.

Thank you

Georgina

[NCEPOD - National Confidential Enquiry into Patient Outcome and Death]

'All patients in England can opt out of their data being used for research and before any data are sent to NCEPOD it will have been checked at the hospital and patient data removed if the person had opted-out. Many of the non-research national programmes that review quality of care (national audits/mortality reviews) are exempt from removing the data of patients who have opted-out to ensure that serious patient safety issues are not missed.

NCEPOD would like to apply for the same permission because as more people opt out, the initial dataset they collect from hospital will be affected and may not be a true reflection of 'everyday' care as it should be. Please note that patients would still be able to opt-out directly with NCEPOD too and that would erase any data they already held.'