A first look at the National Data Guardian Consultation

Late last week, the Government published its consultation on the remit of the National Data Guardian. The consultation is available here and closes on the 17th December, just days before Tim Kelsey departs (NHS) England.

We welcome this consultation, which we believe is intended to ensure the strength and the remit of the National Data Guardian into the future, as NHS England reconsiders its failed approach to data, privacy and information governance.

medConfidential will provide a substantive response to the consultation in future weeks, but on first reading, we would make a few initial observations:

1) This is a consultation on the nature of the teeth the NDG will have

It is not consulting on the existence of those teeth, but their shape and constitution, and how they relate to other bodies.

2) There is a question about how the National Data Guardian relates to Non-Medical Professionals

Medical Professionals are regulated by the General Medical Council; however, many decision-makers in the NHS are not Medical Professionals, and hence not subject to GMC rules and sanctions.

care.data and the Prime Minister’s Challenge Fund fiascos, for example, were both conceived and implemented by individuals who are not (Registered Medical) Professionals. There is currently no effective regulation of those individuals. The details of this will matter, and are likely to need multiple diverse discussions which we look forward to having in the coming weeks and months.

3) Covering the use of Health and Social Care Data about Children

Children are a large and vulnerable constituency of the NHS. For the National Data Guardian to lack effective powers in this area would be perverse.

However, Children’s Social Care is entirely separate to Adult Social Care, and so in practice powers will have to be significantly different – if only because the other public bodies are different bodies with different remits.

We greatly welcome the inclusion of this question in the consultation, though we suspect the Government’s response to the consultation will be limited to the principle of whether the NDG should be able to cover all Social Care, with the details of implementing coverage in Child Social Care being covered by a future consultation on that topic.

Since November 2014, the National Data Guardian has interacted with other regulators on the basis of an agreement of standing and respect for overlapping remits. Until the details of similar interactions can be worked out for Children’s Social Care, that is likely to be the way forwards. Any future consultation on this particular matter need not slow down primary legislation to put NDG onto a statutory basis “at the earliest opportunity” – subject to appropriate provision being made for, e.g. (super-)affirmative resolutions mandating the interactions between bodies in an agreed manner.

We will draft and publish a more comprehensive response in due course.

PLEASE NOTE: This consultation is entirely separate and unrelated to the announcement earlier this month that Dame Fiona Caldicott, the National Data Guardian, will review the language around consent for secondary uses of patient data in the NHS. It was that announcement by the Secretary of State that led, yet again, to another suspension of care.data.

NHS England failed to satisfactorily resolve the question of what “opt-out” actually means and does for nearly 3 years – so, as the scheme’s architect and main proponent himself opts out of care.data by leaving the country, those left behind will have to clean up the mess he’s left.

Our press release on the NDG consultation follows:

[PRESS RELEASE] Consultation on National Data Guardian: “no public confidence without Caldicott”

medConfidential today welcomed the long-anticipated consultation on the role of the National Data Guardian [1] as a step in the right direction. medConfidential and others have been pushing for the reinstatement of statutory independent oversight on the use of personal data across the health and care system since late spring 2014 [2].

With care.data put on “pause” yet again [3], Jeremy Hunt has asked Dame Fiona Caldicott to sort out the “fiasco” that Tim Kelsey and NHS England have failed to address for the past two years. Given the tight timing of this consultation, medConfidential hopes the Government will publish its response before Dame Fiona is required to offer her suggestions on resolving NHS England’s incompetence.

Issued by the Department of Health hours after NHS England announced Mr Kelsey’s resignation, the consultation is a positive step towards restoring public trust in the NHS’ handling and use of patient data.

As many, including leading research charities [5], have emphasised, “Patient data must be safeguarded… The stakes are too high to risk any further mistakes.”

Responding to the launch of the consultation, Phil Booth, coordinator of medConfidential said:

“We welcome putting the National Data Guardian role, currently held by Dame Fiona Caldicott, onto a statutory footing as a sensible and necessary step towards restoring public confidence.

“As we have pointed out time and again, there can be little public confidence in the handling of sensitive patient information without overarching, independent oversight – with teeth – of every single body involved.

“NHS England’s continued screw-ups and missteps are toxic to trust. They must improve, but that must be overseen by an independent body that can inspire confidence.”

Notes for editors:

  1. The consultation was published on the evening of 17 September, just hours after care.data SRO, Tim Kelsey, announced his resignation [6]: https://www.gov.uk/government/consultations/the-role-of-the-national-data-guardian-for-health-and-social-care
  2. See, e.g. medConfidential’s briefing and proposed amendments to the Care Bill 2014: https://medconfidential.org/wp-content/uploads/2014/05/medConfidential-briefing-for-Care-Bill-ping-pong_07May.pdf
  3. See announcement by Somerset CCG (one of the care.data ‘pathfinder’ areas), published by Somerset LMC, 4/9/15: https://www.somersetlmc.co.uk/caredatapaused
  4. “Caldicott to oversee care.data pilot”, EHI, 2/7/14: http://www.digitalhealth.net/news/29382/
  5. Research charities’ letter to the Guardian following PM’s Challenge Fund debacle, 27/7/15: http://www.theguardian.com/society/2015/jul/27/patient-data-must-be-safeguarded
  6. medConfidential Press Release,17/9/15, on Tim Kelsey’s resignation: https://medconfidential.org/2015/press-release-kelsey-leaves-england-for-down-under/

medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

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