Collection of patient data

SSNAP currently has approval under Section 251 to collect patient level data on the first six months of patient care (ECC 6-02(FT3)/2012). More information on section 251 is available here: http://www.hra.nhs.uk/about-the-hra/our-committees/section-251/what-is-section-251/ The rationale for this legal basis is that many stroke patients are extremely unwell in the acute phase of their treatment and it is therefore not feasible to rely on patient consent during this time period.

Patient consent is explicitly sought at six months post-stroke though it can also 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 and no further linkages to other data sources will therefore be possible, however their 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. The SSNAP team do not have access to patient identifiable information at any point in the patient pathway. See our data flow diagram here. 

More detailed  information on how SSNAP collects and shares data securely is available in SSNAP’s Fair Processing Notice for users and SSNAP's Fair Processing Statement for patients. 

Additional information relevant to patients and carers is available in the info for patients area of the webtool.