A new review was recently launched by the Department of Health and Social Care (DHSC) to bring attention to the more efficient and safe use of health data for research and analysis in the healthcare sector.
Health secretary, Matt Hancock has asked director of the DataLab, Nuffield Department of Primary Care Health Sciences at the University of Oxford, Dr Ben Goldacre to undertake this review and report his findings in April.
Having worked on various national technology projects such as OpenSAFELY.org and OpenPrescribing.net, Hancock described Dr Goldacre as someone with a “wealth of experience” in working with health data.
WHY IT MATTERS
Hancock explained: “The pandemic has demonstrated just how important health data is. Ensuring that researchers have secure, transparent and ethical access to health data has the potential to transform health and care and save lives.”
Twelve terms of reference for the review have been outlined by the DHSC, including:
- How do we facilitate access to NHS data by researchers, commissioners, and innovators, while preserving patient privacy?
- What types of technical platforms, trusted research environments, and data flows are the most efficient, and safe, for which common analytic tasks?
- How do we overcome the technical and cultural barriers to achieving this goal, and how can they be rapidly overcome?
- Where (with appropriate sensitivity) have current approaches been successful, and where have they struggled?
- How do we avoid unhelpful monopolies being asserted over data access for analysis?
THE LARGER CONTEXT
A tribute was made today to commemorate the passing of Dame Fiona Caldicott, the first statutory national data guardian for health and social care. In 2014, then secretary of health Jeremy Hunt appointed Dame Fiona to the role with the aim to help “ensure that the public can trust that health and care information is securely safeguarded and used appropriately”, following an Information Governance Review released in 2013, known as the Caldicott2 report. In 1997, she was appointed to lead a review on medical confidentiality and how patient information was protected. From this, the eight Caldicott Principles for sharing personal confidential data established that confidential information should only be used for a justifiable purpose, within the law and on a strict need-to-know basis.
In a recent report published in The Lancet on structural inequalities, biases and racism, it was found that data-driven technologies can exacerbate existing health inequalities. Following concerns about the issue of “race blind” data, the NHS announced that it will start recording COVID-19 vaccine ethnicity data.
In a major move announced by HSJ today, NHSX plans to merge into a new transformation directorate to combine digital and operational improvement teams within NHS England and NHS Improvement.
In the aim of delivering a more joined up health and care system, a recent UK government white paper has outlined proposals to make integrated care systems (ICSs) the default across England, reduce legal bureaucracy, and better support social care, public health and the NHS.
ON THE RECORD
Dr Goldacre said: “The UK has a phenomenal resource in its raw data, and its people. Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all. There is a wealth of expertise around the country, much of it untapped.
“I’m excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data.”