A brand new evaluate was not too long ago launched by the Division of Well being and Social Care (DHSC) to carry consideration to the extra environment friendly and protected use of well being information for analysis and evaluation within the healthcare sector.
Well being secretary, Matt Hancock has requested director of the DataLab, Nuffield Division of Main Care Well being Sciences on the College of Oxford, Dr Ben Goldacre to undertake this evaluate and report his findings in April.
Having labored on numerous nationwide expertise initiatives resembling OpenSAFELY.org and OpenPrescribing.internet, Hancock described Dr Goldacre as somebody with a “wealth of expertise” in working with well being information.
WHY IT MATTERS
Hancock defined: “The pandemic has demonstrated simply how vital well being information is. Making certain that researchers have safe, clear and moral entry to well being information has the potential to rework well being and care and save lives.”
Twelve phrases of reference for the evaluate have been outlined by the DHSC, together with:
- How can we facilitate entry to NHS information by researchers, commissioners, and innovators, whereas preserving affected person privateness?
- What varieties of technical platforms, trusted analysis environments, and information flows are essentially the most environment friendly, and protected, for which frequent analytic duties?
- How can we overcome the technical and cultural boundaries to attaining this purpose, and the way can they be quickly overcome?
- The place (with applicable sensitivity) have present approaches been profitable, and the place have they struggled?
- How can we keep away from unhelpful monopolies being asserted over information entry for evaluation?
THE LARGER CONTEXT
A tribute was made immediately to commemorate the passing of Dame Fiona Caldicott, the primary statutory nationwide information guardian for well being and social care. In 2014, then secretary of well being Jeremy Hunt appointed Dame Fiona to the position with the purpose to assist “make sure that the general public can belief that well being and care data is securely safeguarded and used appropriately”, following an Info Governance Assessment launched in 2013, often called the Caldicott2 report. In 1997, she was appointed to guide a evaluate on medical confidentiality and the way affected person data was protected. From this, the eight Caldicott Rules for sharing private confidential information established that confidential data ought to solely be used for a justifiable goal, inside the legislation and on a strict need-to-know foundation.
In a latest report printed in The Lancet on structural inequalities, biases and racism, it was discovered that data-driven applied sciences can exacerbate current well being inequalities. Following considerations concerning the challenge of “race blind” information, the NHS introduced that it’ll begin recording COVID-19 vaccine ethnicity information.
In a serious transfer introduced by HSJ immediately, NHSX plans to merge into a brand new transformation directorate to mix digital and operational enchancment groups inside NHS England and NHS Enchancment.
Within the purpose of delivering a extra joined up well being and care system, a latest UK authorities white paper has outlined proposals to make built-in care techniques (ICSs) the default throughout England, scale back authorized paperwork, and higher help social care, public well being and the NHS.
ON THE RECORD
Dr Goldacre stated: “The UK has an outstanding useful resource in its uncooked information, and its folks. Our problem is now within the remaining lap: we have to discover protected, safe, collaborative and environment friendly methods to show that uncooked information into insights and motion, to enhance affected person look after all. There’s a wealth of experience across the nation, a lot of it untapped.
“I’m excited to speak to folks throughout well being, social care and analysis about their experiences and considerations to assist drive higher, broader, protected use of well being information.”