What data does NCEPOD request from Local Reporters and how should it be submitted?
Identification of sample cases
For all studies NCEPOD will request that the Local Reporter identifies a group of cases to be included. These cases will either be identified from the hospital information systems or through prospective collection with the aid of study contacts. Either way the data must be submitted on a password protected Excel spreadsheet. Unless specifically requested, patient name, address and telephone number should never be supplied, as they are not relevant to our work. These should be returned to NCEPOD through the email@example.com email address.
Please do not put the password in the same email or into a follow-up email. Please telephone us on 0207 251 9060 and leave the password with any staff member who answers.
We also suggest that you use a random password, not, for example, ‘NCEPOD’ or your hospital name or the study name.
National Data Opt-Out
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.
All health and care organisations must comply with the national data opt-out policy by March 2020. This requirement is supported by Information Standard: DCB3058: Compliance with National Data Opt-outs. Information provided by NHS Digital can be found here: https://digital.nhs.uk/services/national-data-opt-out/compliance-with-the-national-data-opt-out
NHS Digital have provided resources for you to inform patients about it here: https://digital.nhs.uk/services/national-data-opt-out/supporting-patients-information-and-resources
What this means for hospitals in England submitting data to NCEPOD:
To identify patients who do not want their identifiable data used in studies covered by Section 251 approvals, NHS numbers have to be checked against the spine.
- • Please check NHS numbers ahead of sending a case spreadsheet back to us and remove any patients who have opted out
- • Please check again at the point of sending us case notes for included patients
- • Once data has been submitted to us NHS numbers do not need to be re-checked
We ask Local Reporters to pass on the blank questionnaire(s) supplied by NCEPOD to the clinician caring for the patient in the case that was selected. In some instances the questionnaire may be sent directly to the clinician by NCEPOD but we have found that if the Local Reporter oversees the dissemination of questionnaires then a better response is achieved.
Returning case notes
For each case selected we will ask for extracts of the case notes to be returned to us. The preferred method for this is for you to scan them and send as a PDF, password protected, to firstname.lastname@example.org. Please then phone us on 0207 251 9060 to inform us they have been sent and to provide us with the password.
If this is not possible then please photocopy the notes and send securely by post in the plastic envelope(s) provided or securely packaged to our freepost address:
Freepost licence number is RTBS - XCXG - RGLA
74-76 St John Street
We recommend that all case notes are sent via recorded delivery. To use Royal Mail recorded delivery, you need to add £1.10 onto the freepost envelope.