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Patients & Public > What data does SSNAP collect?

Patients, Carers & Public Area - What data does SSNAP collect?

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What data does SSNAP collect?

Hospital and community stroke care teams collect data about the care their patients receive in the first 6 months after their stroke. Teams send this data to SSNAP. SSNAP creates reports to highlight the areas where  stroke care teams are doing well and where they need to improve. Since April 2020, SSNAP has also been collecting information on confirmed or suspected COVID diagnosis.

You can download a full list of the questions SSNAP asks (our datasets) using the following links:
  • Click here for our the list of questions SSNAP asks about the care each stroke patient receives (Clinical Audit datasets).                   
  • Click here to download the list of questions SSNAP asks about the structure of stroke care services in hospitals (Acute Organisational Audit dataset).
  • Click here for the list of questions SSNAP asks about the structure of stroke care services in community teams (Post-Acute Organisational Audit dataset).

Does SSNAP collect confidential patient information?

For patients in England and Wales, SSNAP collects the name, date of birth, postcode, and NHS number (everyone has a unique number used by the NHS).  SSNAP does not collect patient-identifiable data in Northern Ireland. To safeguard stroke patients’ rights, we use the minimum amount of personal-identifiable information possible. The SSNAP team at KCL never have access to confidential patient information.

Confidential information is collected so that SSNAP data can be linked to 3 other secure databases:
  1. Hospital Episode Statistics (HES)
  2. Patient Episode Database for Wales (PEDW)
  3. NHS Digital (NHSD)
HES reports the total number of strokes in England. PEDW reports the total numbers of strokes in Wales. Linking to these databases allows SSNAP to see what percentage of all stroke patients in England and Wales are recorded on SSNAP's database.

The NHSD database tells us the number of deaths in the UK and the causes of death. Linking to the NHSD database lets SSNAP:
  • see how many stroke patients later died (mortality data).
  • see whether patients who get better care are less likely to die.
For more information, please download a patient information sheet (or easy access version, EAV) using the buttons below:

Why was I never asked about SSNAP in the hospital?

It is very difficult to ask all patients for their consent just after they have had a stroke. It is a very distressing time for patients and asking them about this project at this time would not be the most important priority.

  • Some patients find it hard to communicate after they have had a stroke.
  • Some cannot speak
  • Some won’t have relatives with them
The SSNAP team consulted stroke survivors about this, and they said they thought that the positives (the potential to improve stroke services) outweighed the negatives. Because of this, the SSNAP team have an exemption from obtaining explicit consent from each patient to collect confidential information for up until six months after a patient has had a stroke. This exemption is granted by the NHS Health Research Authority (HRA) Confidential Advisory Group (CAG). This exemption is called a Section 251 exemption, please click here for more information.

All organisations that participate in SSNAP are encouraged to talk to patients about SSNAP where this is possible. Teams are also asked to display information about SSNAP on the ward.

When is consent sought for SSNAP?

Patient consent for their information to be included on SSNAP is explicitly sought during the patient's 6 month review (6 months after their stroke). Consent may also be recorded during the patient’s hospital stay.

6 month assessments can be performed by:

  • the clinical team treating the patient 6 months after their stroke 
  • a coordinator from the Stroke Association. Click here for more information about 6 month reviews from the Stroke Association.

For more information about why SSNAP collect 6 month review data, please download our 6 month assessment patient information sheet (or easy access version, EAV) using the buttons below.

For England & Wales: 

6 month  assessment information sheet & consent form
 6 month assessment information sheet & consent form - EAV 
 6 month assessment consent form - EAV

What will happen if a patient refuses consent for SSNAP?

If a patient refuses consent for inclusion in SSNAP, all their personal identifiable information (e.g. name and NHS number) will be deleted from the SSNAP database. This will mean that their data cannot be linked to other secure databases. However, their non-identifiable data will continue to be held on the database. This is because it is important for SSNAP to analyse all data without selection bias. Opting out from SSNAP will not affect the care a patient receives.


National Data Opt Out and SSNAP

By 31 July 2021, all healthcare providers in England must comply with the 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. If a patient is on the National Data Opt Out list, their data will not be submitted to SSNAP.

Page last reviewed: 20 June 2021 
Next review due: 20 June 2021 
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