National Data Guardian: Response to consultation on priorities

Earlier this year the National Data Guardian (NDG) for Health and Social Care, Dame Fiona Caldicott, launched a consultation on proposed priorities for action – her office having been placed on a statutory footing in December 2018. The office of the National Data Guardian advises and challenges the health and care system to help ensure that citizens’ confidential information is safeguarded and used properly.

As a charity with a keen interest in health and social care data and technology, we welcomed this opportunity to engage with the National Data Guardian about its future priorities.

Our own work to enable key stakeholders to harness the value of health and care data has involved extensive research, policy development and advocacy activity as well as several related publications: Intelligent Sharing, our parliamentary briefing for the House of Lords debate on September 6th 2018, Facilitating Care Insight and, most recently, Taking Next Steps to Harness the Value of Health and Social Care Data.

In our response to the National Data Guardian, which can be downloaded here, we recommend that her office:

  • continues to encourage relevant bodies to integrate health and care data so that individual data subjects and the professionals who care for them can access as comprehensive and accurate a data set about them, in as broad a range of health and care settings as possible, in the interests of providing high quality and person-centred services;
  • explores and promotes greater understanding of the scope for distributed ledger and blockchain technologies – like Medical Chain – to empower individual data subjects in respect of accessing and controlling access to health and care data records about them;
  • champions radical transparency and, with it, the development of readily intelligible ‘feedback loops’ so that individual data subjects are appraised of the ways in which data about them is making a tangible difference and, thereby, encourages what we have elsewhere termed ‘data philanthropy’;
  • works with the Information Commissioner’s Office to develop guidance about new and emergent technologies – like Hu-Manity – which are explicitly designed to incentivise health and care data brokerage;
  • explores the potential to mitigate data-driven discrimination in health and care – in particular, where algorithmic developments pertain to the provision of health and care services; and
  • works with pertinent bodies and agencies to design and develop ‘data trusts’, with appropriate consents and safeguards, to link data that are currently controlled by public and private entities with a view to improving health and care outcomes.

Crucially, if the National Data Guardian is to make further progress in ‘getting the basics right’ to improve outcomes for individuals, we recommend that her office devotes more time and energy to data impacting social care planning and provision than has been the case to date, and our detailed recommendations point toward areas she might usefully explore in more depth.

We look forward to the outcome of the consultation and to continued dialogue with the National Data Guardian in future.

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