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[Press Release] The National Data Guardian for Health and Care Review of Data Security, Consent and Opt-Outs was published this morning.

“The NHS has not yet won the public’s trust in an area that is vital for the future of patient care” — Secretary of State Jeremy Hunt quoted in paragraph 1.5

From the report:

“4.2.1 This has been a report about trust. It is hard for people to trust what they do not understand, and the Review found that people do not generally understand how their information is used by health and social care organisations.”

About the existing opt outs that patients have expressed:

“the Review recommends that, in due course, the opt-out should not apply to any flows of information into the HSCIC. ”  (p31, 3.2.31 second column)

About the 25+ years of hospital data that continues to be sold:

“The Review recognises that the new opt-out should not cover HSCIC’s already mandated data collections, such as Hospital Episode Statistics (HES) data. The Review believes it is important that there is consistency and therefore where there is a mandatory legal requirement for data in place, opt-outs would not apply.” (p34, 3.2.41, bottom right)

 

We entirely agree with the Association of Medical Research Charities when they say:

“People need to feel that they can trust the system to handle their information with care and competence, and respect their wishes. If the public do not trust the system, they will be unwilling to share health information for medical research and this will seriously hinder progress on new treatments and cures of diseases such as cancer, dementia, rare conditions and many more.” http://www.amrc.org.uk/news/amrc-statement-on-the-caldicott-review

 

Phil Booth, coordinator of medConfidential said:

“Patient trust is vital. The NHS should win the publics trust by being seen to follow each patient’s wishes. However, yet again, the existing commercial entities demand leadership from others so they can continue feeding on patient data, despite the wishes of patients.

“The last data release register from HSCIC contains continued release to commercial companies. One, Beacon Consulting, on their homepage, advertise “we help our pharmaceutical clients solve difficult commercial problems”. Their commerical access was renewed in the most recent HSCIC data release register.”

“It seems the Department of Health is trying to have it both ways – tell patients one thing and commercial entities the other. When the consultation comes out, the public can have their say and the Department of Health will have to finally decide.”

“There has to be a better way to find out how your data has been used than reading google’s press releases.”

Notes

The Hospital episode statistics now contain 1.5 billion patient hospital events, linked to each patient across a lifetime. According to the review, the 1.2 million patients who have opted out of their data being included in the hospital episode statistics, continue to have their data included in the hospital episode statistics – their choice has been ignored.

 

Caldicott Review and Government Consultation – 1st thoughts

This post will continue to be updated.

medConfidential welcomes the publication of the National Data Guaridan Review of Data Security, Consent, and Opt-Outs and the Government consultation on the findings.

  1. In practice, it matters most what the Government response and consultation says. Dame Fiona’s Review, while vital, may in practice end up as disregarded as the recommendations of her previous review.
  2. What is the change patients will see?  Will each patient know how their consent choice has been honoured? Will “make informed choices about how their data is used” be made real?  “The public is increasingly interested in what is happening to their information” (video 4)
  3. Being published in weeks where political promises have barely lasted hours after people resigned, and with the current opt out being the gift of the Secretary of State, what basis will the new consent language have? Is it comprehensive?
  4. “There has been little positive change in the use of data across health and social care since the 2013 Review and this has been frustrating to see.” — Dame Fiona Caldicott
  5. “The NHS has not yet won the public’s trust in an area that is vital for the future of patient care” – Secretary of State
  6. Will the National Data Guardian be put on a statutory footing? It was due to happen in the Digital Economy Bill, but the Bill has been published, and it’s not there. Another broken promise from the Secretary of State? The National Data Guardian consultation response is out, again promising legislation.
  7. If there are two opt outs, the “NHS” and “research” boxes may be overly confusing. Dodgy commercial projects will find an NHS figleaf to sneak in the “NHS” preference, while legitimate and bona fide academics will be left in the “research” box with it’s potentially radioactive commercial examples — this is the opposite of what a quick read by a busy citizen would expect. (page 39 – top right for the commercial project on radiation)
  8. MedConfidential welcomes the proposal that the opt out will be comprehensive across the NHS. This is an important simplification for patients, unless it is badly mishandled.
  9. Recommendation 18: “The Health and Social Care Information Centre (HSCIC) should develop a tool to help people understand how sharing their data has benefited other people. This tool should show when personal confidential data collected by HSCIC has been used and for what purposes.”
  10. Paragraph 1.35  “the opt-out should not apply to all flows of information into the HSCIC” — that’s GP data
  11. “The Review recognises that the new opt-out should not cover HSCIC’s already mandated data collections, such as Hospital Episode Statistics (HES) data. The Review believes it is important that there is consistency and therefore where there is a mandatory legal requirement for data in place, opt-outs would not apply.” – that’s all data going to most commercial entities.
  12. Video 4 is of most interest

first press comment now up.

With a pending consultation, it matters that the people who wish their data is used, and those who wish it not to be used, can both know, based on evidence, that their wishes were each honoured.

There has to be a better way to find out how your data has been used than reading google’s press releases.

2016 Digital Economy Bill

On the day that Tory MPs vote on a new leader, with the Home Secretary who tore up an ID card on her first day in office in the lead, the Government has introduced legislation to bring the database state back via the side door.

s38 of the Digital Economy Bill may require sharing of births, marriages, and deaths across the public sector in bulk without individual consent.

s29 as written allows sharing of medical information to anywhere in the public sector, or commercial companies providing public services, if it may increase “contribution to society”.

The National Data Guardian is not placed on a statutory footing.

As the Conservative leadership election moves forward, it seems to be that the database state is back.

 

 

update: The Cabinet Office have been in touch to say:

Para 18 of the government response clearly states:
18.       The Government acknowledges the importance of health and social care data in multi-agency preventative approaches and early intervention to prevent harm. We will do further work with the National Data Guardian following the publication of her review/report to consider how health data is best shared in line with her recommendations.

As a result health bodies are out of scope of the powers in the draft regulations.

The Bill itself contains no such exclusion, and many local authorities have been lobbying for precisely that access. We will look to clarify with a probing amendment at committee stage, but appreciate the press office getting in touch.

Data Usage Reports: Data derivation receipts from data processors

[this post will be amended slightly following the release of the Caldicott Review]

Some data processors wish to start getting ready for the introduction of Data Usage Reports. Data controllers will be the subject of a future post. For reporting of new knowledge created, existing reporting processes should be used.

For data processors that make data copying decisions based on instructions, the relevant component is simply the creation of an electronic receipt confirming the instructions, and the individuals whose data was copied.

It should be entirely derivable from audit materials, and require no ongoing extra work where there are audit systems. Below, we show the output manually, via a spreadsheet (excel) and, for the technical implementators, structured form.

The details

There are two parts of the receipt:

  1. The details of the data flow: the what, where, when, why. (these probably don’t change often, so regular updates may omit them)
    Organisation: “recipient organisation”
    Date: 2016-04-01
    Project title: “one line name” optional
    Description: “3 sentences about what/why” optional
    URL: a web link for more information optional
    legal basis for flow: optional
    postcode: (if relevant, for consented direct care access) optional
  2. The individual level identifiers for those individuals (the who). These being the identifiers that the processor was provided with (which in all likelihood should have been changed before the data was passed on)

    Identifiers as received by this processor
    785481E8-0BC1-4641-8ED7-D4D8D22C8AF2
    9B4E89F4-46E1-4D2B-8390-BBC728ABDA8D
    096E8894-1F69-45C3-AAF1-FBF4CF0E8313
    DFCF3B06-901C-407D-AB69-63E6D706C14A
    C39B1756-26A7-4200-96F4-284924AFE6E3
    B0F0A37A-CABD-404E-9256-796A69CD179D
    CE83E652-C44E-4D4F-86E0-2C9CBC49EB4D
    DBFB867B-08F9-4AD0-B05E-B947E39E31FF
    A947B578-A51F-464A-BD49-41C7956F2F8C
    08A015FA-D9A5-4FE8-BAAF-879FA84F50D8
    653ba56b1f21ad8bf7d4e30cc2fa4b1a10e4603c
    25fd81548b61dc0e0abf19c1809c7941a8ac15fc
    81811f9e9c698d5320f9069c35550e783c28806d
    726fe5e2f816c879169b38fe9cef944bcf898d10
    63c18e85a12dccc5304c88c847e3b85a33cd44ff
    39b17ecdab874579538afa2ebb3b333e63b08846
    2fc47b8ca79e381e598adfc5ef956b3596ff5853
    a85c70ebf68bda26df3088eee4fb890a7b2443e2
    b8feb487d136d1bce44e263f970a182b07061fc8
    d8045b84bc64d6f8a93b6820bfdecce9e1c980c7


Phrased like that, you can see it’s not particularly complicated.


Production of a data usage report is simply the information from receipts, with the existing information on release decisions and publications, transformed for the citizen.

If you’re interested, we’re happy to also talk to you about how to use data usage reporting.

Data use in the rest of Government: Where is the consultation on any ethics?

Where is the consultation on any ethics?

As care.data was in the NHS bureaucracy, this consultation is about doing more of what Government been doing already: Not better sharing, just more copying.

If this wasn’t about databases, the same consultation could be had about buying more filing cabinets, ink, and scribes. Continue reading →

Data in the rest of Government: Put data to good use?

{this is a background reference blog post, ahead of more on the Cabinet Office’s data copying consultation. The call to action will be in the next newsletter.}

“Let’s make data easy to put to good use” says the Cabinet Office. But good for whom? Good for the civil service? Good for each citizen? Who makes sure the balance is right?

Care.data was claimed as a “good use” of data. The details showed it to be something radically different. The Cabinet Office consultation launched last week is about bureaucracy as usual. The mantra is reform, but the reform is to bring all the benefits to Government, and the downsides for citizens.

Digital transformation, this is not.

Continue reading →

[Press Release] MedConfidential comments on today’s #IPBill Report

EMBARGOED – SAME AS JOINT COMMITTEE REPORT: 09:30 on 11 Feb 2016. Copies will appear at https://medConfidential.org/news after that time

 

MedConfidential Comments on Medical Records and the Report of the Joint Committee on the Draft Investigatory Powers Bill.

The more scrutinisation the Bill receives, the less it stands up.

Individuals and information snared within Bulk Personal Datasets[1] “…may include, but is not limited to, personal information such as an individual’s religion, racial or ethnic origin, political views, medical condition, ***, sexual orientation, or any legally privileged, journalistic or otherwise confidential information” [2]

Recommendation YY.e of the 2015 ISC report[2] said the bill should contain “Specific safeguards for certain individuals or categories of information – for example, UK nationals, legally privileged information, medical information etc”

It didn’t.

When asked whether medical records should be disavowed, The Home Office responded[3]

“this may provide those that wish to do us harm greater insight as to the limits of the agencies’ capabilities”.

Without a publicly made case, the Joint Committee report states “the lack of that detail makes it hard for Parliament to give the power sufficient scrutiny.”[4]

In contrast, the Intelligence and Security Committee of Parliament, which may read any classified information they require to provide sufficient scrutiny, recommended:[5]
“B. Where additional protection is provided for sensitive professions, these safeguards must be applied consistently, no matter which investigatory power is used to obtain the information. The new legislation should be amended to rectify this inconsistency.
“F… The Committee considers that the acquisition, retention and examination of any Bulk Personal Dataset is sufficiently intrusive that it should require a specific warrant. We therefore recommend that Class Bulk Personal Dataset warrants are removed from the new legislation.”
To meet their recommendations from 2015, the ISC’s first recommendation from 2016 of a “single additional Part that addresses privacy safeguards and clearly sets out universal privacy protections which apply across the full range of investigatory powers” must also protect medical records. A discussion the Home Office has refused to have, and the Department of Health have so far ignored[6].
 

 

Phil Booth, coordinator of medConfidential said:
 

“The Home Office’s bluff has been called by Parliament. The Intelligence and Security Committee of Parliament said in 2015 that there should be security safeguards for medical records, yet Theresa May just ignored them, and let the agencies make up their own rules.

“The ISC has said that if Theresa May wants to grab the entire nation’s medical history, she has to have specific grounds.

“It’s not enough to simply fear those who may wish harm, it is necessary to defend the values of our country. It seems Parliament has had to explain this to the Agencies and the Home Office yet again.

“Theresa May wants secret copies of everything because she’s afraid; Parliament wants privacy and transparency because we are a democracy. Privacy and security don’t have to be opposites, but we’ll see how David Cameron’s Government responds when it comes to the most private of NHS data.

–notes–

  1. Bulk personal datasets are the Government’s term for large databases of personal information, such as medical records.
  1. Intelligence and Security Committee of Parliament Report ‘Privacy and Security: A modern and transparent legal framework‘. March 2015 http://isc.independent.gov.uk/news-archive/12march2015 para 163(ii), p58.
  1. paragraph 403, Report of the Joint Committee on the Draft Investigatory Powers Bill
  1. Intelligence and Security Committee of Parliament Report on draft Investigatory Powers Bill. http://isc.independent.gov.uk/committee-reports/special-reports
  1. “The Department [of Health] was asked to comment on the Draft Investigatory Powers Bill presented to Parliament in November 2015 and, at that time, did not consider that this would create any new powers that would require or permit the disclosure of confidential personal information by health and care bodies (on the basis that this is consolidating security agencies’ existing powers).” http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Lords/2016-01-25/HL5377/

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.

For further information or for immediate or future interview, please contact Sam Smith or Phil Booth, coordinators of medConfidential – coordinator@medconfidential.org

forthcoming “Digital” Legislation in 2016

Will this week’s flawed data grab by DWP be the portent of things to come? (We’ll post something on this in our next newsletter; but if you’re deeply concerned, your consent choice will be honoured). 

The forthcoming digital economy legislation is intended to define how George Osborne and this Government wish to heed Martha Lane Fox’s call to “make Britain brilliant at the Internet”, for everyone. But, those with a wish to be brilliant at using the Internet against people are also rubbing their hands with glee. How this affects medical records, and more, is currently unknown until the consultation.

The NHS apps store, with its panoply of catastrophes was shut down, but silently in a way that they hoped no one would notice. Including any victims. Children’s school records continue to be linked and sold, including to newspapers. Will the sale of pupil records continue in secret? Our concerns about Public Health England grow every time they open their mouths. I haven’t seen data governance this conceited since Tim Kelsey assured the listeners of Radio 4 that there had been no data breaches, and then care.data collapsed with data breaches up to your ears. HSCIC argues it has reformed; PHE still believes that it didn’t need to.

On a positive note, the legislation will be a convenient way to implement any legislative changes required from Dame Fiona Caldicott’s forthcoming consent review, after they have been consulted on. We hope that the Department of Health and all its constituent bodies will accept the principle that in order for people to trust how their medical records are been used, it is necessary for each patient to know every way that their individual level records have been used. Like a bank statement, it’s there for whenever you wish to look, and if things are unaccounted for, you have the information to ask questions.

But the legislation will be much wider than just medical data governance.

While medical records are my day job’s primary concern, there are many other records held by Government and business that are traded in ways as shady, or more so, than what was shown with care.data 2 years ago. What will the legislation do there?

The failed leadership at the Government’s “digital catapult” wants you to be subject to “the UK’s data sharing movement”; will that be following pharmacy2u’s lead in predating on the public in their dark shadows? Is this really how BIS wishes grantees to spend its budget?

The other approach is transparency to citizens of how individual level data about them is used and stored. When a citizen has the option of knowing how data about them has been used, the temptation for secret dodgy deals is far reduced. Of course, there’s less money in that for people whose usual approach is to scam the elderly out of their life savings.

Concerns are not just health, and it’s not just Government.

Which way the Government intends to go will be defined by the legislation. Does this Government want to be secretive and invasive, or will it commit to requiring transparency and consent? Will it do things to citizens and patients, or will it work for citizens and patients?

Where Health or Government lead, enlightened charities businesses can choose to follow and will gain a competitive advantage from doing so. Organisations that wish to act ethically currently have no business or operational incentive to do so, those who consider their customers as potential victims have no incentive not to. (If you’re interested in our demonstrator of this for your business or organisation, please get in touch).

Trust in data increases when transparency to individuals of their own data includes those dark corners – Data usage reporting is good for everyone.

Towards protecting data in secondary uses

Last summer, the Department of Health consulted on a programme called “Accredited Safe Havens” (ASH), an idea by which individual level medical records could be transferred somewhere (an ASH) for certain reasons.

While research needs clear individual level data for some applications (because while researchers research a topic, they don’t know the precise question – if they did, it wouldn’t be research), for the two other main uses, risk stratification, and invoice reconciliation, there are alternate approaches available which don’t need to transfer millions of individual level records.

In our response to the DH consultation, we summarised those approaches rather briefly, with various grey areas.

Updated 2018: The various discussion documents are now available directly:

  1. An introduction to the approach
  2. Risk Stratification
  3. Invoice Reconciliation (2018)
  4. Invoice Reconciliation (2015)
  5. Invoice Reconciliation for A&E (September 2015)

If DH/NHS England were to put any resources into this, there may be no individual level records that need to be transferred under provisional, interim governance, blanket authorisations that have been renewed “temporarily” since 2013.

We’re also giving evidence to the Health Select Committee tomorrow, and put one new idea into our submission as an annex: “CLASSIFIED when completed”: Which needs better protection – official memos, police witness statements, or all our medical records?

A brief Early August update – things not to read on the beach

Question: Did NHS England contact CCGs inviting them to become care.data pathfinders?

It seems all of the NHS England press office are relaxing under a tree, as they wont answer that question. In two other care.data articles also published yesterday, Pulse reports the ICO’s view that responsiblities are “good customer service” and that doctors are getting closer to opting their patients out.

A quote from a GP in that last article says, “opt outs in her surgery currently stood at 20%”, which is a significant amount of the population in that area, when at best only 50% will likely have heard of it. Tim Kelsey may argue “there is no percentage at which this becomes useful or not”, yet the statisticians may begin to have views as more figures are revealed. We’ve previously posted some thoughts on how NHS England can choose to empower GPs and also allow consensual research. Maybe NHS England can read that on their holidays, while figuring out how to be very clear and transparent with everyone on what they’re doing. Secrecy and confusion benefits no one.

The current level of confusion is highlighted by one GP who says patients initially think it a “good idea if the emergency doctors knew about their medical conditions.”. That of course, is unrelated to of care.data, which has no direct care applications at all, but a feature of an entirely different scheme, with a different set of problems and consent questions, the Summary Care Record (as it was known before being rebranded due to it being “toxic”). We can see why even GPs get confused though.

As NHS England recommunicates with GPs, hopefully they wont continue to cross-sell the benefits of other programmes as benefits of care.data. NHS England have no excuse for confusion remaining, as they near the end of the 6 month pause that was supposedly to solve all the problems

Consultations

As everyone’s on holiday, there are a number of open consultations at the moment that may be of interest:

  1. Department of Health on Accredited Safe Havens. We’ve posted our outline replacement proposal here before, and will post a fuller submission when it’s completed. Deadline, this Friday
  2. HSCIC Confidentiality Code of Practice. The long awaited HSCIC Confidentiality Code of Practice is out for consultation. Deadline: Next week
  3. And a new one, which isn’t so much of a formal consultation as asking a bunch of people who have shown some interest, is on the new HSCIC contracts and agreements for data sharing, including rules for sub-licensing. We’ll have quite a lot of questions about these. If you yourself have any comments on either the drafts or documents, the HSCIC would like to receive your comments by August 29th, marked FAO Simon Gray via <enquiries@hscic.gov.uk>.

Job hunting?

The Department of Health is recruiting 3 lay members, at a day a month, for the “National Information Board”, which was set up in January to try and fix the trainwreck that DH saw coming. This is an important panel with oversight of both DH and NHS England’s overlapping remits and strategies.

[this para added later]: The academicly funded “Administrative Data Research network” is looking for a member of the public willing to give over a day a month, for free, reviewing their applications. The commitment includes relevant reading time, plus a video conference a month, with 4 in person meetings a year. Details now appear here (their website was broken, so here’s the word document they mailed to their existing lists).

NHS England is also trying to hire someone to be Senior Responsible Owner for Care.data, having failed to find an internal candidate — we can’t imagine why. If you’re interested, we put together a list of questions that you may wish to ask at inteview. Apparently the risk that they may have to answer them in a binding way has caused some furrowed brows, as an interview board misleading candidates is considered bad form.

I can’t imagine why.