Information governance within NCEPOD
    This page is intended to provide information for service users or parents/carers of service users whose information may be used for NCEPOD’s work.
    Data Protection Officer
  • The Data Protection Officer at NCEPOD is Dr N. Smith. Further information is available by emailing nsmith@ncepod.org.uk or by contacting the NCEPOD office on 0207 251 9060.
  • What patient information NCEPOD collects
  • We collect a large sample of patient cases relevant to each study directly from hospitals using a secure computerised data collection system. From this we randomly pick cases to be included in a detailed review of the notes made by clinicians, such as doctors, nurses, physiotherapists.

    The information we collect for the case note review includes:
    1. A questionnaire completed by the clinician involved in the patient’s care
    2. Copies of hospital medical records, reports and test results
    3. Letters and medical records from other doctors and other health care organisations such as GPs involved.

    Once this information is received it is completely anonymised and we remove any information relating to the identity of the patient including name, address, date of birth, hospital and/or NHS number.

    During the case note review, clinicians trained for the study look at the care provided to each patient and they compare the quality of care received with national standards of care where they exist, such as legal requirements or NICE guidance, and also with the standard of care that they would expect to provide to patients or expect to receive. The case reviewers do not know who the individual patients are, they never review cases from their own hospital and any links to identifiable information that NCEPOD holds are destroyed when the assessments are complete and the reports are published to ensure that all these assessments remain strictly confidential.

    Through this process the reviewers identify aspects of care which could be done better in the future to improve care for patients in the study areas. We are careful to ensure that the final report does not contain any information that could lead to the identification of any person.

    For a detailed poster explaining about the information NCEPOD collects, please click here.

  • How we use your data
  • To view our Data Flow Diagram please click here.

NCEPOD Privacy Notice

  • NCEPOD has a legal duty to keep information about you confidential and secure. We will not share any information that identifies you for any reason, unless we have to do this by law.

    To view our Privacy Notice please click here.

    To view our Privacy Notice in Welsh language please click here.

    To view our Privacy Notice in Welsh language please click here

    Overview of current data collections
    NCEPOD is currently collecting information for two work programmes:
    1. Medical and Surgical Clinical Outcome Review Programme
    2. Child Health Clinical Outcome Review Programme

    To see the list of current studies please please click here.
    The purpose of NCEPOD’s work is to examine factors that can be changed about the quality of care provided to patients across the UK including the Channel Islands. We publish a report at the end of the study recommending where improvements can be made to improve care for future patients in these areas.

    To identify patients/service users whom the studies are relevant to we need to use information which includes personal information such as date of birth and NHS number and postcode. Because the number of cases involved in each study can be from 3,000-20,000 cases over a short time period (to ensure we get enough cases from every UK hospital) it is not possible for us to obtain the consent of every patient.

    In order to carry out this work we have been given permission to collect and use this information under very strict conditions of confidentiality and data security. Access to this information is strictly limited to those who need to process it and all information is anonymous in the results we present in the final report. Once the study is over all data are securely destroyed.

  • Will I be told if my health records are used by NCEPOD?
  • NCEPOD will not contact you directly and you will not be informed if your records are used by NCEPOD. Your NHS records will not detail if any of your information has been requested by NCEPOD. We will not be trying to obtain the consent of the individuals involved simply because of the large numbers of individuals involved. For patients in Northern Ireland we will not receive any identifiable information.

  • Can I access records held by NCEPOD about me?
  • You are entitled at any point to ask about how your data is being or has been processed. We would only be able to comment until the point of anonymisation as after that we are not able to identify a specific person's information.

    There is no charge to find out what information we have and we will respond to your request within a month. Use the contact details below to request your information. We will need your NHS number to search for your details as we do not collect names.

  • Right to erasure/National Data Opt-Out (England only)
  • You do have the right to opt out of having your information used for these purposes. If you decide that you would prefer that your information is not used in this way please let us know by contacting us in writing at the postal address or email address below, or by telephoning:

    Dr Marisa Mason
    Chief Executive
    NCEPOD
    Ground Floor, Abbey House
    74-76 St John Street
    London. EC1M 4DZ

    Telephone: 0207 251 9060
    Email: mmason@ncepod.org.uk

    National Data Opt-Out – what it means for you:
    The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs.
    Patients can view or change their national data opt-out choice at any time by using the online service at https://www.nhs.uk/your-nhs-data-matters/ or by calling 0300 3035678.
    NHS Digital have provided resources for patients here: https://digital.nhs.uk/services/national-data-opt-out/supporting-patients-information-and-resources

    More detailed information about the work of NCEPOD can be found using the following links:
    1. About NCEPOD
    2. NCEPOD method
    3. NCEPOD studies
    4. NCEPOD publications