SSNAP has approval under Section 251 to collect patient-level data on the first six months of patient care. The rationale for this legal basis is that many stroke patients are extremely unwell in the acute phase of their treatment and it is not feasible to rely on patient consent during this time period.
Patient consent is explicitly sought at six months post-stroke, though it can be recorded during the patient’s inpatient stay. Where a patient refuses consent for inclusion in SSNAP, all their personal identifiable information will be wiped from the dataset.
Patient refuses before data input
If the patient refuses consent during their stay, do not start a SSNAP record for the patient. Starting a record will include adding patient-identifiable information.
Patient refuses after data input
If the patient refuses consent and their data has already been added to SSNAP, please answer 7.102 with ‘No, patient refused consent’. All patient identifiable information will be wiped from the SSNAP webtool.
Patient refuses during six-month assessment
If the patient refuses consent at the six month assessment stage, please select ‘No, patient refused consent’ for 8.1.5. All patient identifiable information will be wiped from the SSNAP webtool.
If a patient refuses consent, non-identifiable data will continue to be held on the database as it is important for the purpose of SSNAP to analyse all data without selection bias.
National data opt-out
From 1 October 2020, all healthcare providers in England must comply with the National Data Opt Out
(https://digital.nhs.uk/services/national-data-opt-out). Patient data entered onto SSNAP is subject
to the opt out. This means that clinical teams MUST screen every patient’s NHS number against a
national opt out list at NHS Digital prior to ANY data being entered onto the SSNAP webtool.
Please note: in Northern Ireland, no patient identifiable information is collected via the electronic SSNAP webtool.