Data access at HQIP

Welcome to our page on Data Access at HQIP where you can find information about our data access processes (including our Data Access Request Group), and how we provide safe access to data. If you are a prospective data applicant and would like more information regarding the application process, please head to our Data access request – information for applicants page.

As commissioner of the National Clinical Audit and Patient Outcome Programme (NCAPOP), HQIP is responsible for the largest programme of national clinical audits and clinical outcome review programmes in the UK. Information about each of these projects can found on the A-Z of NCA webpage and the Clinical Outcome Review Programmes webpage.

What do we mean by ‘data access’?

The audits and outcome reviews in the NCAPOP collect, analyse and report data to help improve the quality and outcomes of care in the NHS. We call this the ‘primary use’ of the data. But there may be ways to re-use the data and achieve even more public benefit – for example for other healthcare improvement initiatives, projects, service planning or innovation projects. We call this ‘secondary use’ of the data, and we use the term ‘data access’ to describe how we review applications for secondary use projects, provide permission and then share or allow access to the data for these projects.

HQIP’s Data Access Request Group

HQIP’s Data Access Request Group (DARG) is the committee that is responsible for considering applications for ‘secondary use’ of data and recommending to HQIP whether the proposed access to data should be supported. It is important that DARG ensures that any data access agreed is anticipated to benefit the health and care of the public. It is also essential to ensure that the data will be used appropriately, safely, and legally (see the Five Safes Framework section below).

DARG members

  • Glenn Hearnden – Director of Operations – Corporate Services, HQIP (DARG’s Chair)
  • Yvonne Silove – Associate Director for Quality and Development, National Clinical Audit and Patient Outcomes Programme, HQIP
  • Danny Keenan – Medical Director, HQIP
  • Chris Boulton – Deputy Director of Operations, National Joint Registry
  • Alyson Ottley – Research and Governance Programme Manager, National Joint Registry
  • Julia Trusler – Associate Director, Quality and Development, National Clinical Audit and Patient Outcomes Programme (NCAPOP), HQIP
  • Desislava Staykovska – Information Governance Lead, HQIP
  • Tom Bigg – Business Support Officer, HQIP (DARG Secretariat)

We are also currently undergoing an internal review process seeking to add public membership to our DARG.

The data access request process – how does it work?

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An individual, or organisation, that wishes to request access to data must submit an application (known as the Data Access Request Form) to HQIP’s DARG. HQIP’s data access process has two distinct phases: approval and dissemination.

Firstly, to gain approval, the application is reviewed by HQIP and by the audit provider that is commissioned by HQIP to run the relevant NCAPOP project. The purpose of the review is to determine whether the requested data can and should be shared. The application is reviewed first by the NCAPOP provider who checks that the proposed use is clear, robust, achievable, and likely to result in the anticipated benefits. If so, they sign the application which is then reviewed by HQIP at DARG.

DARG then systematically reviews the application at one of their monthly meetings. There are often clarifications and extra information requested, and sometimes applications are not successful.

If the application is approved, HQIP adds their signature to the application form which the NCAPOP project and applicant have already signed, and which also includes the terms of the data sharing agreement. Once this is in place, the second phase, dissemination, can follow. In this phase the data detailed in the agreement is prepared by the NCAPOP project team and shared with the applicant. Whilst HQIP’s DARG manage the data access request process, the actual data is held and released by the NCAPOP team.

Understanding health data and access

Complex rules govern how health and care data can be shared for research, innovation, and other uses beyond individual patient care. Making sense of, and keeping up to date with, how these systems work to provide access to data can be daunting, both for new data applicants and for patients and the public. Our Understanding Health Data Access webpage provides some informative resources that outline how to design projects which protect patient privacy and meet legal requirements. Included in this is a section dedicated to providing information for patients and the public, with useful links signposting to other resources available for individuals who would like to find out more. You can also find out more about how patient data is used and why it’s important through the resources created by Understanding Patient Data.

The Five Safes framework – how do we provide safe access to data?

The Five Safes framework is a set of principles, originating from the Office of National Statistics (ONS), that enable organisations to ensure they are providing safe access to data. It provides a way of thinking through the checks needed to be sure that the data will be used in a secure and responsible way. The Five Safes are: safe people, safe projects, safe settings, safe data, and safe outputs.

The Five Safes are used by many organisations to support the safe use of data – more information regarding the framework can be found on the UK Data Service’s webpage and their introductory video.

Further information on each of the five dimensions, and how they are made relevant to HQIP’s data access request processes can be found below.

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The Five Safes

Safe people

Do the people using the data understand their data protection responsibilities?

Anyone wanting to access individual patient records from HQIP must hold an employment contract with the applicant organisation, requiring them to comply with their data protection policies. In addition, the Data Sharing Agreement binds the individual and their organisation to strict rules to protect patient privacy and comply with the law. DARG also checks that the expertise in the applicant team covers the range of skills likely to be required for the project.

Safe projects

Is the proposed project an appropriate and ethical use of the data?

Data applicants must show how the data requested can be reasonably expected to meet the proposed purpose, whether its use is lawful and whether it will deliver clear public benefits. DARG will check that the methods the project will use appear suitable, and that any required ethical approval has been gained for the proposed project. Checks of the public information about the project and its use of data are also made.

Safe settings

Does the environment in which data is being accessed keep the data secure?

DARG reviews all the settings listed by the applicant where data will be processed and checks that any data transfers use secure methods. National data security accreditation is also checked which reflects the adequacy of the technical controls in place to prevent accidental or deliberate disclosure of personal data. Researchers must also clearly specify exactly who will have access to which parts of the data requested.

Safe data

Is the data treated to protect confidentiality?

DARG must ensure that any data shared has controls in place to minimise the risk of an individual being identified. DARG requires that applicants only request and retain the minimum amount of data, in the least identifiable form necessary, to enable the project to succeed. Data is securely deleted once it is no longer necessary for the purposes of the project. Identifiable data is only shared where it is essential to the project and where patient consent is sought or can be legally set aside.

Safe outputs

Are there any risks in outputs from the data being disclosed?

Every applicant must confirm and ensure that any outputs they would like to publish (such as tables or figures) cannot be used to identify any individual person. The applicant must confirm all planned outputs in their application and, for each output, confirm that it will meet national anonymisation standards. The terms of the Data Sharing Agreement reinforce this requirement.

Further information

This webpage was co-designed with our Service User Network (SUN) members using grant funding from HDRUK that HQIP was awarded to improve the transparency of our data access processes.