Transparency will be key to maintaining public confidence in how NHS England obtains, holds, uses, disseminates, and protects data.
NHS England will, as NHS Digital did previously, publish all directions received from the Secretary of State so there is full transparency about the IT systems it delivers on behalf of the Secretary of State and about what data is being collected and analysed and for what purpose. It will also continue to publish requests made by other organisations for it to collect and analyse data.
Before establishing any new data collection, NHS England must consult with a variety of people, including representatives of those from whom information will be collected and those who may use the data.
Like NHS Digital, NHS England will publish information on its website about how it collects, uses and shares data with others, including a Data Uses Register. This will ensure that the public know what data is being shared, with whom and why. Organisations will only be allowed to access data if they have the right legal basis, can demonstrate that they can manage it securely and are using it to improve health and care.
NHS England will, as NHS Digital did, obtain independent advice on its data access processes, procedures and, where appropriate, on individual decisions around data access. This will also include its internal data access processes.
NHS England will put in place a new data advisory group to include independent advisers, including members of the previous NHS Digital Independent Group Advising on Release of Data (IGARD). This group will, individually and collectively, provide expert advice and assurance on both internal and external access to data for planning, commissioning and research purposes.
NHS England will consult with the Department of Health and Social Care and the National Data Guardian on the terms of reference of the data advisory group, which will be approved by the NHS England Board and published.
NHS England will be required to report to Parliament, as part of its annual report, on how effectively it has discharged its new transferred data functions. This will include how it has protected patient data.
The Information Commissioner and the National Data Guardian are both key external stakeholders in relation to how NHS England uses, manages and protects patient data. NHS England will engage proactively and transparently with them to obtain their advice and challenge, in addition to engaging with them in their formal statutory, and in the case of the Information Commissioner’s Office, regulatory roles. It will also consult the National Data Guardian as part of producing its annual report.
NHS England will continue to manage the production of official statistics about health and care data, publishing these in line with the Code of Practice for Statistics, under the independent leadership of the organisation’s Chief Statistician. It will also continue to publish a wide range of open data, management information and statistical publications in accordance with its transferred data functions. In line with the Code, the Chief Statistician will have sole authority for deciding on methods, standards and procedures, and on the content and timing of official statistics. The Chief Statistician will report to the National Statistician (the Government’s Head of the Statistical Service) on all professional matters.
Taken together, all of this adds up to ensure that NHS England is upholding the highest standards of transparency and continues to be publicly accountable for how it collects, analyses, publishes and shares information.