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 the 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.
- 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 application form can be downloaded below:
Can I use SSNAP data for quality improvement projects or evaluations?
Yes. Individual teams have access to the full locked data that they have uploaded. Aggregate data is available for all teams participating in SSNAP and can be downloaded freely. All requests for anonymous patient level data need to go through the application and approvals process.
Do I need to inform SSNAP if I use aggregate data for quality improvement projects or research?
No. However, SSNAP must be attributed as the source of the data in publications or reports. We are also keen to hear about any quality improvement projects using SSNAP data and may be able to help you share and showcase your work. Please let us know how you are using the data to improve care by emailing us at email@example.com or telephoning the SSNAP helpdesk (0203 075 1318)
How do I attribute SSNAP in publications or reports?
Please attribute SSNAP as ‘Sentinel Stroke National Audit Programme (SSNAP) , Royal College of Physicians’. When describing funding please include the following statement ‘SSNAP is funded by the Healthcare Quality Information Partnership (HQIP) on behalf of NHS England’.
How do I request anonymous patient level data?
The first step is to complete the application form and send to firstname.lastname@example.org with 'Data Request' in the subject line. Requests need to demonstrate a clear rationale for using the data and how they will be used in an ethically sound and scientifically robust manner. A clear justification is required for each data item requested, explaining how it will contribute to answering the research question. If you would like to make an informal query prior to submitting an application then please email us at email@example.com
What does the application process involve?
The first step is to complete an application form detailing the proposal for using patient level data which will be reviewed by the RCP Stroke Programme and need to be externally reviewed. The RCP Stroke Programme will then respond to say whether the application is suitable or not, or if further information is required. In all cases, accepted proposals will then need approval by the Data Access Request Group (DARG), hosted by the Healthcare Quality Improvement Partnership (HQIP), the funders and data controllers of SSNAP. Successful applications to the DARG will then require a data sharing agreement to be signed before data can be released. In some cases, application may also need to be made to the Health and Social Care Information Centre.
Can I request patient level data that includes patient identifiers?
Can I request aggregate data that is not already in the public domain?
Yes. If you require aggregate anonymous data that is not already available freely then please contact SSNAP. We may be able to provide bespoke extracts of aggregate data, depending on the details of the request and the data analysis capacity of the RCP Stroke Programme.
Can I collaborate with the RCP Stroke Programme on a project or proposal?
Yes, although this will depend on the nature of the project and the capacity of the RCP Stroke Programme. If you wish to collaborate with the RCP Stroke Programme then please contact us to discuss.
Is there a cost to requesting data?
Aggregate SSNAP data is published openly and feely, and there is no charge for downloading or using aggregate data. Charges will apply for extracts of anonymous patient level data. The charges are to recover the costs of managing the applications process and preparing extracts of data.
Will you let me know if someone else is carrying out a similar study?
Because aggregate data are open access, it is unlikely that we will know about studies using aggregate data and therefore will not be able to tell you if you are duplicating a study. We will inform researchers requesting anonymous patient level data if their research question(s) and protocol is similar to a study that is already underway.
Can I use extracts of anonymous patient level data for other studies?
No. Data can only be used in the manner described in the agreed research protocol. If you wish to carry out further studies not specified in the protocol then approval will need to be granted.
How long can I keep data for?
There are no restrictions on keeping aggregate data. Extracts of anonymous patient level data will need to be securely destroyed after an agreed time – typically two years. Researchers will be required to formally inform SSNAP that data has been securely destroyed.
What about publishing my findings?
We expect that all studies using anonymous patient level data will be written up and published in a peer-reviewed publication. This is true even for ‘negative’ studies as the risk of publication bias from observational studies is even greater than for interventional studies. Wherever possible publications should be Open Access and researchers should include the costs of open access publication in funding applications for studies using SSNAP data.