May 25th 2018 will start an awareness-raising programme with the public that their data matters – and what, if anything, changes as a result of patients’ increased rights under GDPR.
With regard to NHS patients’ health data:
- A new NHS ‘National Data Opt-Out’ commences on GDPR day (May 25th);
- NHS Digital continues to sell (i.e. disseminates under contract, on payment of a fee) patients’ data, as it has been doing for years;
- GDPR expands the definition of ‘identifiable data’ (one reason why everyone’s privacy policies are changing);
- Will NHS Digital ignore patient opt-outs on these newly-identifiable data releases, relying on definitions from the old Data Protection Act?
- NHS Digital / DH refuse to ask data applicants why 98% of NHS patients’ data isn’t enough for them; while there may be legitimate reasons to override patient opt-outs, pretending new legislation does not apply to data releases (yet again) is not one of them.
Your Data Matters… but NHS Digital sells it anyway
NHS Digital still forgets about patients. Unfortunately, it sees them less as people and more as ‘lines in a database’.
NHS Digital continues to sell a product called ‘Hospital Episode Statistics’ (HES); a dataset that is not actually statistics but that rather consists of individual patients’ lifelong hospital histories, with every medical event dated and linked together by a unique identifier. As of May 24th, two-thirds of NHS Digital’s data disseminations do not respect patients’ right to object (‘opt out’) to their data being used for purposes beyond their direct care.
If you read NHS Digital’s own Data Release Registers, or view them at TheySoldItAnyway.com,  you can see for yourself the evidence of where data goes – and where patients’ express wishes are deemed not to matter.
After four years, and further breaches of health data, NHS Digital ignores the choices of the 1.4 million people who opted out and still sells their (and every other hospital patient’s) data for commercial reuse. Those who claim to need 100% of the data for some reason, need merely explain to a competent data release body why 98% of people’s data isn’t enough – an explanation they’re currently not even asked to provide.
GDPR clarifies that the hospital data NHS Digital continues to sell is identifiable data – so claimed exemptions (item 5) to people’s opt outs don’t apply. Especially for those who remember the dates of particular medical events in hospital, such as the birth dates of their own children, or who can read about them online. 
‘Could do better’
Last week, the Department for Education called a halt to the sale of the data it collects on schoolchildren  for the very reason the NHS continues using to justify its sale of patients’ data.
NHS Digital now has a research environment  which allows far higher safety for patients’ data – but the companies that don’t want the NHS to be able to see what they’re doing with the data are special pleading. It is precisely these hidden uses to which patients are most likely to object.
NHS Digital’s customers, for example, still include for-profit companies such as Harvey Walsh, an “information intermediary” that – exactly as it did in and before 2014, and despite having breached the terms of its contract since then – continues to service commercial clients including pharmaceutical companies, which use the information to promote their products to doctors.
The digital service launching for GDPR Day in fact does less than the form that’s been available on medConfidential’s website since late 2013.  Our GP form works immediately – if you use the new digital service, your GP won’t know about it for months.
Discussing a damning ‘report’ in the House of Commons, the chair of the Health Select Committee censured NHS Digital for its “dimmest grasp of the principles of underpinning confidentiality”.  The Government has agreed to raise the bar for breaching patients’ confidentiality when handing information to the Home Office; will NHS Digital now respect the choices of those patients who wish to keep the information in their medical records confidential too?
The solution to this is straightforward: DH can Direct NHS Digital to respect objections (opt-outs) in all releases of HES that CAG has not approved to have data released without patients’ objections honoured. There may be projects that require 100% of patient data; two-thirds of them do not.
The ICO has not yet updated its (non-statutory) Anonymisation Code of Practice to match GDPR, although its guidance on the GDPR definition of personal data and newer codes on subject access rights show the definitions in GDPR mean NHS Digital’s current practice does not deliver on its promises to patients.
The NHS has ignored legislative changes and harmed research projects before – see note 4 in this post. This effect is one of the main things that prompted the Wellcome Trust to create the Understanding Patient Data initiative.
But it is still (a bit) better than it was…
NHS Digital now sells less of your data than it used to; it only sends out hundreds of copies of the nation’s hospital records – ‘pseudonymised’, but containing information that GDPR recognises makes it identifiable, and therefore still personal data.
You now have the ability to make a choice for you and (after a fashion) your family that will work, in due course  – but NHS Digital needs to listen to Dr Wollaston, “take its responsibilities seriously, understand the ethical underpinnings and stand up for patients”, respect that patients’ data matters, and fully honour everyone’s choices.
Questions for interviewees:
- What does the NHS’ online-only opt-out service not do on day one, that the GP-led process did last week?
- How many steps does it take for a family to express their collective choice on how their data is used?
- When this new digital dissent process was signed off under the Government’s Digital Service Standard, did Ministers spare a thought for their families at all?
- Will patients’ opt-outs be honoured in the dissemination of HES under GDPR?
- If not, will those patients who already opted out be told why not?
- A mother with 2 children is over 99% likely to be identifiable from their children’s birth dates alone; given the enhanced GDPR ‘right of access’ to any recipient data to which opt-outs have not been applied, will NHS Digital keep selling what GDPR defines as the identifiable patient data of those who have opted out?
- What is the burden on medical research of this choice by NHS Digital, made to placate its commercial customers?
If you or any patient would like to see how their data is used, and where their choices are being ignored, please visit TheySoldItAnyway.com
Notes for Editors
1) NHS Digital publishes its data release register as a spreadsheet but it fails to link to, e.g. its own audit reports – so medConfidential has created a more readable version that does.
2) All the information required to identify Ed Sheeran’s entire hospital history in HES appears in this BBC News article, published online on 19 May 2018: http://www.bbc.co.uk/news/uk-england-suffolk-44155784
3) ‘Sharing of school pupils’ data put on hold’, BBC News, 15 May 2018: http://www.bbc.co.uk/news/technology-44109978
4) A ‘safe setting’, as medConfidential and others recommended in evidence to Parliament back in 2014: https://digital.nhs.uk/services/research-advisory-group/rag-news-and-case-studies/remote-data-access-environment-to-speed-up-access-to-data
5) We have updated our form to reflect the name change. See https://medconfidential.org/how-to-opt-out/
7) The National Data Opt-out should be respected by bodies across the health and care system “by 2020”.
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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