The National Data Guardian for Health and Social Care last month published a report to outline their priorities for 2022-2023.
Dr Nicola Byrne, National Data Guardian for Health and Social Care, begins the report to reflect on work carried out over the past year in line with the mission of safeguarding trust in the confidentiality of health and social care services. She notes: “It is clear to me that only by securing people’s confidence and support can we do all of the ambitious, innovative, life-changing things with data that are part of the system’s future vision for how health and care will be delivered.”
Dr Byrne expands to comment on her experience this past year, noting: “This first year has brought home to me the importance of the high value I place on leadership that supports the integrity, maturity and healthy functioning of our day-to-day working relationships – whether that is across organisations, professionally or with patients and the public. Ultimately, it is only through these relationships that the benefits of data and digital can be realised.
“This means listening and responding to what you hear, learning from when things don’t go right, and being honest and transparent with people. It also means leadership that is realistic,” she adds.
The paper moves on to share the projects the National Data Guardian and her support team have been involved in, including learning from the pandemic, providing guidance on Caldicott Guardians, supporting better public benefit assessments, and influencing data policy. It then moves on to highlight their work on advising the system across projects such as GP Connect, record sharing programmes and information governance, Integrated Care Systems and Caldicott Guardians, future-proofing existing GP data uses, Data Security and Protection Toolkit, and digital inequalities research with Ada Lovelace Institute.
For priorities for the year ahead, the report states “advising, supporting, and overseeing system change” remains its aim. This includes supporting the transition to Integrated Care Systems, the merger of the NHS Digital ‘data safe haven’ into NHS England, the use of data in a post COPI notices landscape, and the implementation of Data Saves Lives: reshaping health and care with data.
The priorities include supporting the Data Protection and Digital Information Bill; Health and Care Information Governance Panel; General Practice Data for Planning and Research programme; Accelerated Access to GP Records programme; Data Security and Protection Toolkit; implementation of secure data environments / trusted research environments; implementation of the NHS federated data platform; Information Commissioner’s Office’s anonymisation; pseudonymisation and privacy enhancing technologies guidance; implementation of opt outs; and the definition of direct care in a collaborative and digitised health and social care system.
In addition, attention will focus on developing guidance to help the system interpret what is meant by the term ‘public benefit’ when health and care data is used. The report notes: “The need for secondary uses of health and care data to deliver a public benefit is an essential criterion in establishing public support for access to that data. But what constitutes ‘public benefit’ in a data sharing context is an ill-defined concept. And so the NDG’s ‘Putting Good into Practice’ deliberative engagement project explored how people evaluate public benefit where health and care data is used for secondary purposes. The dialogue was carried out with the intention of informing NDG policy advice or guidance that will provide an interpretation of the term ‘public benefit’ that is rooted in empirical research. This will help organisations conduct public benefit evaluations that are consistent with public thinking.”
The guidance is being developed with an aim to “help any organisation that processes confidential or personal health and adult social care data (for reasons other than the provision of direct care) to evaluate whether their intended use of the data can be considered to deliver a public benefit.”
To read the report, please click here.
