Researchers

NHS England and GIG Cymru/NHS Wales are responsible for the national cardiovascular clinical audits in England and Wales and are negotiating data sharing agreements with NHS Scotland and Health and Social Care Northern Ireland. Our data access request service (DARS) ensures that the data we commission are available for quality improvement, service evaluation, evidence-based decision making and research. Details of the NICOR datasets are available on the NICOR datasets page.

Prior to starting the process of applying for data you should read all sections of this page and contact our support team using the following email address: nicor.datarequests@nhs.net

Not all enquiries progress to the application stage. It may be that the data you need are available through our existing published data. Please read the following information to see if the data you require are available from another source before proceeding with your application.

Data from the NICOR cardiovascular registries are routinely reported and these reports are available on the NICOR website.

It is possible that you need additional data for your application. NICOR datasets are aligned to third party data sets such as Hospital Episode Statistics (HES) and Office for National Statistics (ONS) data which are managed by NHS Digital. However, you may have to apply to NHS Digital for use of these data.

If you have determined that a data access application is still necessary, you should contact the NICOR data access request service before you submit an application and to request the relevant data access request form. The NICOR DARS will advise you if your data requirements can be met and will assist you with your application before you submit it.

NHS England and GIG Cymru/NHS Wales can authorise the release of data for which they are the data controller. Data can be shared for the purposes of quality assurance, quality improvement, service evaluation and research, if certain conditions are met and depending upon permissions being in place for each application.

NHS England and GIG Cymru/NHS Wales cannot give permission to share data for which they are not a data controller; this includes where a project has been linked to a dataset controlled by another organisation, such as NHS Digital. It is important that where you would like to access a linked dataset, you discuss this with the NICOR data access request service before you submit an application.

Please be aware that there are currently restrictions on the transfer of both personally identifiable (patient level) data and de-identified (including pseudonymised) data to organisations outside of the UK. This includes some countries within the European Economic Area. NHS England and GIG Cymru/NHS Wales cannot currently approve applications that involve the transfer of personal data to an organisation that is geographically based in a country outside of the European Economic Area (EEA) ‘safe list’. Until this decision is revisited, NHS England and GIG Cymru/NHS Wales recommend that international organisations partner with a UK institution to ensure that the data and data processing remain within the UK.

We are committed to ensuring that, where possible, all data, outputs and publications are made publicly available for the benefit of the public and the NHS.

Applicants for research data are expected to publish any findings or outputs resulting from their analysis of NICOR data. All manuscripts should be provided to NHS England/GIG Cymru at the draft stage to ensure compliance with the DARS process. Applicants should reference that the data used were collected by NICOR on behalf of NHS England and GIG Cymru/NHS Wales.

The acknowledgement should take this form:

• Data have been provided by the National Institute for Cardiovascular Outcomes Research with approval from NHS England and GIG Cymru/NHS Wales

To be transparent, we will publish a public register of approved data sharing applications. We will include within this register the lay title and lay summary of your project that you will have provided within your data access request application form.

If you wish to access a small amount of anonymous and aggregate information that has not yet been published by the NICOR project, please contact the NICOR data access request service. These requests may not require the completion of a full data access request form.

Reproducing NHS England or GIG Cymru/NHS Wales copyright material

If you do not wish to access data but wish to reproduce tables, text or other information that is included in any NICOR report or output under NHS England or GIG Cymru/NHS Wales copyright, please contact us directly at the NICOR data access service.

You can contact the NICOR data access service at: nicor.datarequests@nhs.net

NICOR will confirm receipt of your request. The NICOR data access request service (DARS) will undertake an initial review of each application within two weeks of submission.

After the initial review, the NICOR DARS manager will either refer your application to the NICOR/NHS England and GIG Cymru/NHS Wales Research Access Committee (RAC) or, if the application has not been satisfactorily completed, request clarification or further information from you.

We will allocate a reference number to your application. This reference number should be used within the subject field on all correspondence relating to the application.

The RAC meets monthly, but some decisions may be made by the Chair of the RAC prior to the next meeting.

Each application is reviewed against the following criteria:

• Is the proposed use of the data clinically appropriate?
• Is the proposed use of the data methodologically sound?
• Are there similar applications under review?

If the RAC approves the basis for the study, it will proceed to a full review of the information governance details provided:

• Does the application satisfy the requirements of the GDPR and Data Protection Act 2018?
• Are the necessary legal and ethical permissions and security arrangements in place?

We will inform applicants of the outcome of the completed review within one week of the final decision.

Following approval, data will be released within a reasonable timeframe agreed with NICOR. This may vary depending upon the complexity of the data requested and the scope of the core audit activity being undertaken at that time. Specific requirements around de-personalisation (pseudonymisation) or data linkage may require discussion with the NICOR data managers. We expect data to be released in 4-8 weeks for most applications. Please discuss any deadlines or timescales with the NICOR DARS team before you submit your application to ensure you can get the data you need within your preferred timeframe.

If the RAC does not approve the release of the data, you will be advised on steps required to improve or modify your application. This advice will be provided on the listed outcome date. Once your application has been updated with the requested clarification and returned to NICOR it will either be submitted for the Chair’s action or be submitted for review at the next RAC.

The payment schedule is designed to cover the cost of administering and processing your request. Once your application has been approved and a Data Sharing Agreement (DSA) signed, transfer of data will only proceed once payment for the first year of data has been received by NICOR. Even if your DSA covers a period for greater than one year, NICOR will invoice for data transfers on an annual basis. Failure to settle the annual invoice in a timely manner will result in an end to the DSA and data for the second (or subsequent) years’ requirements will be withheld.

Our payment schedule means how much you pay is determined by the amount of time and effort the review and approvals process and the relevant data collation requires. Costs are variable and we review our pricing structure on an annual basis. Please contact the DARS Manager at nicor.datarequests@nhs.net to discuss the fees relevant to your application.

Extensions

Please note that existing Data Sharing Agreements (DSA) are not automatically renewed. They are only valid for the agreed period as specified in the DSA, unless NHS England and GIG Cymru/NHS Wales has granted a longer period in exceptional circumstances. If the data are required beyond the expiry date within your approved DSA you would need to request an extension by filling in our Extension/Amendment data access request form which is available from the DARS manager. This should be completed and submitted at least three months before the expiry of the DSA in order to further hold the data.

Any extension to the original DSA will incur an additional administrative fee.

Amendments

If a significant change is required to an existing data access request form (DARF) (and hence the Data Sharing Agreement), for instance, your protocol or Ethics Committee approval has changed, the outputs dates have changed, there is a change to the agreed data flows, the duration of your project is extended, or an additional data field is required which is not included in the original application (provided the objectives and purpose of the data processing remain the same), you can request the amendment by filling in our Extension/Amendment data access request form by following the instructions in the form. These can be obtained from our DARS manager.

For minor amendments, such as a change in your local research team, a formal amendment process will not be required but an updated log of the personnel should be supplied to the DARS manager. This should be provided to NICOR before the new team member starts work on the data. Should a new member of the research team work in a different organisation to those identified in the original DARS, a full amendment application with appropriate information governance details of the partner organisation will be required.

Please note that extension/amendment requests are subject to the same process followed when a new DARF is received (i.e. pre-RAC checks, possible clarifications requests and submission to our monthly RAC meetings for review and approval). The approval process may therefore be time consuming and requiring additional resource, which is why NHS England recommends that you start working on your renewal/amendment request in good time.

For more information on application fees, please see the Costs of Data Access section above.