Os hoffech chi gael yr arolwg hwn yn y Gymraeg - anfonwch e-bost at mmason@ncepod.org.uk
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) has been around for nearly 40 years, reviewing the quality of care provided to patients to highlight improvements that could be made to make healthcare safer for future patients. Because of the work we have done we have seen improvements in trauma care, children's cancer services, out of hours operating, and the transition from child to adult health services to name but a few - more information can be found on our website.
We are not classed as research, nor audit, as we do one-off surveillance studies to highlight where everyday care can be improved across the UK.
To be able to run our studies to look at 'everyday' care rather than just the care of patients where something went wrong we ask hospitals to send us a big dataset (often 1000s) of all patients who had the procedure/illness we are reviewing and from this big group we randomly select around 1000 patients to undertake a closer review of their care. It would be impractical to get consent from every patient at this stage and we would also risk getting a dataset that did not reflect the population of patients being cared for. Although we have patient identifiable data at the start of the study*, this is removed once we receive the data and no patient/hospital/healthcare provider is ever identified. By the end of the study, we only hold an anonymous dataset.
All patients in England can opt out of their data being used for research and before any data are sent to us 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 we 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 we already held.
*In order to carry out this work in England and Wales, we have been given ‘section 251’ support to collect and use this information under very strict conditions of confidentiality and data security by the Secretary of State for Health and Social Care, on advice from the Confidentiality Advisory Group (CAG). In Northern Ireland and Jersey there is no equivalent law to protect patient data, so we only use anonymous data from the start.
NCEPOD is registered with the Information Commissioner's Office and we are compliant with the NHS Data Security and Protection Toolkit.
THE REASON FOR THIS SURVEY IS TO SEEK YOUR VIEWS ON:
- NCEPOD's use of patient identifiable data.
- NCEPOD accessing data on patients who have opted-out of their data being used for research.
If you would like to discuss any aspect of NCEPOD's work or how we process data please email Marisa Mason mmason@ncepod.org.uk, Marisa is the Chief Executive and Caldicott Guardian.