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Support: 0116 464 9901  |  ssnap@kcl.ac.uk
Data requests

Data requests

As can be seen from the research showcased in this section, our aim is for SSNAP data to be used as widely as possible to improve the quality of care for people with stroke.
 
However it is essential that the anonymity of the people included in the database is protected and that the data are used in an ethical way. We therefore provide two types of data from SSNAP:
 
Aggregate data – these are data at the level of an individual hospital or team. SSNAP already openly publishes a large amount of data collected in SSNAP at aggregate levels and so these data do not need to be requested. Data can be accessed via the SSNAP clinical audit results page. However, for aggregate data that is not already published publically, researchers will need to fill in the “Aggregate data request form” below.

Download aggregate data request form

Anonymous patient level data – these are data at the level of individual patients but do not include any personal information, such as name, date of birth, address or NHS number. SSNAP may provide anonymous patient level data to researchers who wish to carry out bona fide research or service evaluations. Researchers need to complete an application process to obtain extracts of anonymous patient level data. The "patient level application form" can be downloaded below:
 
Download patient level application form

In this form you provide details of the research, including the context, methodology, funding, and researchers involved in the project. Once the Stroke Programme receives this form we will consider if it is technically sound and whether we have sufficient information to proceed with the request process. If it is accepted you will then need to complete both a Data Sharing Agreement and Data Access Request form which will be considered the Healthcare Quality Improvement Programme (HQIP), SSNAP’s data controllers.

HQIP are the data controllers for SSNAP, and as such, it is HQIP who would assess whether we can provide this SSNAP data. This would be assessed by the Data Access Request Group (DARG) at HQIP. You will need to submit a request to HQIP by completing and submitting a 'HQIP Data Access Request Form (DARF) - the form is available to download from the HQIP data sharing webpage. This form must first be returned to SSNAP for consideration and signing, before it is then submitted to HQIP. Further information is available on the HQIP data sharing webapge and a document produced by HQIP providing guidance for applicants can be viewed here.  

The Data Access Request Group (DARG) at HQIP meet once every month to consider each application. Details of the meeting, submission deadline and outcome dates are available here. Please be aware that if the applications are successful, there will be fees attached to the data sharing.

If you have further preliminary queries regarding your data request, such as discussing the consent form, we recommend you contact HQIP directly by emailing datasharing@hqip.org.uk. 
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