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Patients, Carers, & Public > What data does SSNAP collect?

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

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What data does SSNAP collect?

SSNAP collects information about the care that stroke patients receive from when they first arrive in hospital up until 6 months after their stroke. The data collected can be used by hospital and community rehab teams to identify areas in their practices where improvements can be made. 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 Clinical Audit datasets.                   
  •  Click here for the Acute Organisational Audit dataset.
  •  Click here for the Post-Acute Organisational Audit dataset.
For further information, we have provided the below ward poster and patient information leaflets which are ideal for sharing within hospitals or by community teams.

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 and the SSNAP team at KCL never have access to confidential patient information. Confidential information is collected so that SSNAP data can be linked to other secure databases, which report the total numbers of strokes in England and Wales and whether any stroke patients later died (mortality data). This allows SSNAP to see what percentage of all stroke patients are included on SSNAP and if patients who get better care are less likely to die.
 
For more information, please download our patient information sheet 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. Some patients find it hard to communicate after they have had a stroke, some cannot speak, and some won’t have relatives with them. It is also a very distressing time for patients and asking them about this project at this time would not be the most important priority. The SSNAP team consulted stroke survivors about this who said that 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 up to 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 and are 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 by the clinical team treating the patient at 6 months post-stroke. Consent may also be recorded during the patient’s hospital stay.  For more information, please download our 6 month assessment patient information sheet and consent form (or easy access version, EAV) using the buttons below.


For England & Wales: 

6 Month Patient Assessment Information Sheet & Consent Form
 6 Month Patient Assessment Information Sheet & Consent Form - EAV 
 Consent Form - EAV
 

For Northern Ireland: 

6 Month Patient Assessment Information Sheet & Consent Form
 6 Month Patient Assessment Information Sheet & Consent Form - EAV 
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 dataset and no further linkages to other databases 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. Opting out from SSNAP will not affect the care a patient receives.

 

National Data Opt Out and SSNAP

By 30 September 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: 25 March 2021 
Next review due: 25 March 2021 
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