Category Archives: NHSEngland

#caredata, care.data, commercial, confidentiality, HES, HSCIC, NHSEngland, scope, transparency, trust

Flagship care.data – [2] Commercial use with the Brokers

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“If our health records should sail off in the flagship care.data programme, on the sea of commercial Big Data, are we confident that there is consent, fair processing, transparency, accountability, security and good governance? We must know that these basic mainstays are in place, to give it our support.”

“He that filches from me my good name, robs me of that which not enriches him, and makes me poor indeed.”                     William Shakespeare, Othello

I read this Shakespeare quote last week, not in the original but in the statement Data Brokers: A Call for Transparency and Accountability by US Commissioner of the Federal Trade Commission Julie Brill, May 27 2014. [1] . Since then I have tried to piece together a lay consumer understanding, of how this commercial data market works and how our health records fit in. Experts in data markets and many others will undoubtedly see how naïve it is. But by sharing my ordinary understanding as a mother who is thinking about the impacts of my shopping habits and upcoming care.data decision will have on my children’s future, perhaps I can highlight how trusting we are, and why those governing our data need to ensure the processes around our data are worthy of that trust.

The Commissioner begins:

“Data brokers gather massive amounts of data, from online and offline sources, and combine them into profiles about each of us. Data brokers examine each piece of information they hold about us – where we live, where we work and how much we earn, our race, our daily activities (both off line and online), our interests, our health conditions and our overall financial status – to create a narrative about our past, present and even our future lives. Perhaps we are described as “Financially Challenged” or instead as “Bible Lifestyle.”

Perhaps we are also placed in a category of “Diabetes Interest” or “Smoker in Household.” Data brokers’ clients use these profiles to send us advertisements we might be interested in, an activity that can benefit both the advertiser and the consumer. But these profiles can also be used to determine whether and on what terms companies should do business with us as individual consumers, and could result in our being treated differently based on characteristics such as our race, income, or sexual orientation. If data broker profiles are based on inaccurate information or inappropriate classifications, or used for inappropriate purposes, the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”
In other words, organisations, which we may not know store our personal, sensitive or confidential data, use it to classify, segment  and label us. In this environment when third parties it seems know more about us than we may know ourselves, it would seem prudent to want to control and understand what data is held by whom and how they use it. Especially, if in her words, “the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”

This is why it matters what is being done at break-neck pace to extract and share our health records in England.

I believe we are not yet sufficiently aware of how our data is used by these intermediaries, and if we were, we’d be horrified. We are complicit consumers in how our data is used with minimal understanding. We’re prepared to unwittingly trade a little privacy with the supermarket, to get our discount vouchers through the post. But we don’t look beyond that to understand what price we are paying and how our commercial interests may be harmed, in much more significant ways than £10 discount or a Legoland entry may compensate. Just like our food, the public are complicit [2] in our own downfall, accepting the marketing spin. We don’t understand credit ratings [3] and risk scores, and even if we do, most consumers don’t know data brokers offer companies scores for other purposes unrelated to credit in an onward chain of reselling. Data can be inaccurate, we are unaware of how to manage or correct it, how we are labelled by it, what opportunities it may restrict as highlighted in the report. We should be better informed.

I’ve recently learned how these, “powerful cross-channel consumer classifications help companies understand the demographics, lifestyles, preferences and behaviours of the UK adult population in extraordinary detail.” [4] demonstrated by Experian.

That they understand and track my behaviours probably better than I do, and at such detailed level, I find surprising and invasive. “Within rural areas we are able to pick out the individual households that are likely to be commuting to towns and cities nearby…” I’ll go more into that later.

It has come to the attention of the general public,  only in the last 6 months, that our hospital episode statistics (HES) and data from other secondary care sources, have been on sale in this consumer market. As I said in a previous post [5], a year ago, in April 2013, The ‘Health and Social Care Transparency Panel’ discussion on sharing patient data with information intermediaries stated at that time, there was no legitimate or statutory basis to share at least ONS data [6] in that way for commercial purposes:

“The issues of finding a legitimate basis for sharing ONS death data with information intermediaries for commercial purposes had been a long running problem…The panel identified this as a significant barrier to developing a vibrant market of information intermediaries.”

The HSCIC at that time saw a “vibrant market of information intermediaries, for commercial purposes” using our personal records as desirable and indeed, as Sir Kingsley Manning’s comments to the Health Select Committee demonstrate, in their DH handed-down policy remit.


In this way, companies who process data such as Beacon Dodsworth received data in the last year and offered it for commercial exploitation by others “HES data may be used by pharmaceutical companies “to improve [their] social marketing / media awareness campaigns”. Others included  OmegaSolver [7] and Harvey Walsh [8].


Some of that data goes back into our health market as business intelligence, both for NHS and private use, for benchmarking, comparisons and making commercial decisions. In our commissioning based marketplace [9], now becoming normalised.

Through the press earlier this year, and the first data release register [10] we have come to understand in part, who is using it and at least in part, how. Aside from bone fide public health planners and health researchers, and the intermediaries using data for commissioning support tools, recipients include these commercial companies and third-party intermediaries exploiting the data as a commodity. Organisations which may buy raw data and sell it on, or process it and sell that data mined information onwards. Organisations after which, Chair Kingsley Manning told the Health Select Committee, [11] we have no idea whom all the end users may be. He indicated the progress that is needed and that HSCIC is already working on improvements, stating the view that “the process HSCIC inherited was no longer robust. ” Q285

“Kingsley Manning: I realise that, and may I come back to that? That is why, specifically with regard to the sets of data that are covered by data-sharing agreements, I took the view that the process that we inherited was no longer robust. We have therefore been in the process of changing the management and the processes, and we have voluntarily adopted a process of being much more transparent about the process and about the data releases we have made.

              Q286Barbara Keeley: But what I was trying to get to was the concern.  We are just looking for transparency and honesty here. On all the data that was previously released through these commercial reuse licences where there are end users—the question that the Committee wanted to put to you—you are unable to say what are the uses to which the data release under those licences may be put, what controls are in place and what information is provided—you don’t know. With the whole 13 years of the HES database and however many million records have gone out to one of these providers that then provides on to others—in the United States, this has involved putting up the data on Google cloud, and we are not sure of the security of that—you can’t say. You should admit it now. If you can’t tell us where all that data is and what all its uses are, it seems you can’t. You have already admitted that entirely commercial market uses—

              Kingsley Manning: The control is through both the overriding regulations established within the Data Protection Act and the data-sharing agreements that we enter into with people, which specifically allow the reuse of data with safeguards with regard to anonymity.

              Q287Barbara Keeley: So you have no idea who the end user is. You have no idea if they are using it properly because there is no audit.

              Kingsley Manning: And that is in accordance with the law and the regulations as they stand today.

              Q288Barbara Keeley: So, just to be clear, audit is not going to be possible for all the uses and all the end users. The data is out there. You have licensed people to use it and other people to buy it, and there is no control over that—it is just out there.

              Kingsley Manning: I don’t accept there is no control. There is control established in accordance with law and the regulations as they are today.

              Q289Barbara Keeley: But you are not able to say who is using it and for what reason. You are not able to say that.  There are end users out there.

              Kingsley Manning: No, because we have a large range of organisations that we have been encouraging. Government policy has for a long time been to encourage the use of this data to advance both the health and social care system in this country and the economy. If, for example, we supply pseudonymised data to a drug company to help it to develop a new drug, we do not know the end users beyond that organisation, but that is perceived as being a task and a function that we have. It is done in such a manner that the data is safe and secure, and is not identifiable back to an individual.

              You may wish to change the base upon which we act. We absolutely welcome the suggestion that we should submit these to the confidentiality advisory group. We have identified a number of cases where we think its guidance would be very helpful, including in this area. We would absolutely welcome that, but I am afraid we cannot make up the rules that we act by.”

This is what concerns me, if the purposes and permissions granted for care.data are to be defined by the reason why recipients get data for the “promotion of health ” [12] and that their worthiness to receive data is based on,  a wooly, undefined notion of whether it will improve care or promote health. It cannot be transparently judged if many users of data are intermediaries with re-use licences, if even the HSCIC doesn’t know who all the end users are, and does not routinely audit them. Nor can anyone know how identifiable therefore the accumulated data sets may be.

If HSCIC does not track each release, each time, each recipient receives data, how do they know every time a new request is granted, how much of the jigsaw puzzle for any given individual, is left to complete?

If you don’t know who they are, how can you govern them and what they do with our data? How on earth can anyone judge how they will be for purposes in the Care Bill 2014 of:

(a)the provision of health care or adult social care, or

(b)the promotion of health.

How can the data controllers judge whether that  release, together with all the data these companies already hold, will not do us ‘significant harm’  in the words of Commissioner Brill, of the Federal Trade Commission? Will it not by its nature of labels discriminate against segments of our society, whom the data owners select, based on information beyond our visibility or control? Is society which is segmented and stratified at risk of every increasing inequality? Disability groups for example, may feel at increased risk of stigma or exclusion. David Gillon [13] addresses this in his post here. How can individuals determine if releasing our data to these companies is in our own, or the public interest [14]?

Impossible if we don’t know who they are, and we don’t know what they already hold. A model which is hardly transparent nor conducive to trust.

Dr.Neil Bhatia in Hampshire, a GP who founded the non-commercial website care-data.info, asked HSCIC in an FOI request for the data *about him* which was released to these type of intermediaries. He was told this week, that the data controller, the Health and Information Centre, does not know. We can then only surmise, if our individual data was contained in pseudonymous bulk data transfers in which there remains ‘a latent risk’ of identification. So from the released data register, we should look at what types of companies are using pseudonymous data. We are also told that penalties may be imposed, or even ‘one strike and you’re out’ for misuse of data. Until now at least without robust audit procedures, I believe we’d never know. So how could data be better secured?

There is talk of a ‘fume cupboard’ access, [15] or giving customers data only in query format, instead of giving out raw chunks of the database. But the Care Bill certainly didn’t legislate for any changes in those types or indeed any governance procedures. We can only wait and see if talk becomes reality and how we can trust it becomes a secure policy and stays so, after we entrust our data. There is no delete button after all.

The Secretary of State wrote on April 25th [16], asking to ensure current practices are up to the task, but as polite as it is, a letter is no form of governance. On June 12th, HSJ [17] reported that the HSCIC has ordered a significant number of trusts to “promptly” delete a series of datafields, which it claims could put patients at risk of being identified, because some of the information in “secondary uses service” that they had submitted to the agency had been entered in an incorrect way over ten years. The good news in this, is it would appear progress is being made in audit, and these errors are being addressed.

However, it highlights the issue created when you release raw data beyond your control. It will mean that organisations who should not have received data, did. How now is that data to be removed from information into which it has become? It will now no longer be raw numbers, but be in graphs, comparative studies and have been inexorably merged with other data. Unlike Cinderella’s carriage, it’s not an automatic process that the raw materials, the data, returns to its previous state after it has become enhanced, turned into business intelligence. The raw files may be traced, removed and deleted, but the knowledge it has turned into, will be almost impossible to find and delete. The links between the two may have disappeared into thin air. Harder to find, than the owner of the glass slipper. An impossible audit trail.

An audit process on leaving the trusts and upon arrival at HSCIC and on leaving HSCIC – at least a three place checkpoint – is what I would have  been familiar with in the past for payroll & personal data. It seems that audit procedures for our health records, have just not kept up with the speed at which the data has been sent out on the open seas, and there has been no audit.

“Q287Barbara Keeley: So you have no idea who the end user is. You have no idea if they are using it properly because there is no audit.

  Kingsley Manning: And that is in accordance with the law and the regulations as they stand today.”

It’s not to say there are no controls. We are told that data sharing agreements prevent data provided being matched with other data held, which prevents making individuals identifiable. However, as I’ll look at in my next post, I don’t think it even has to get the the person level to be sufficiently identifiable as to be discriminatory. The segmenting of society at group level, at household level, with detailed understanding of our behaviours, is sufficient, aside from the identifiable individual level data these companies hold for identity verification and so on. When companies extract and store raw data, we have no idea where and with whom it lands up. I’ve been completely surprised by what I have learned in the last few weeks how these third parties use our data.

The current controls around and governance of our health data remains unchanged by the Care Bill.  Through policy, law and directions the HSCIC has

…”licensed people to use it and other people to buy it, and there is no control over that.” [12]

As Sir Manning said,

…”because we have a large range of organisations that we have been encouraging. Government policy has for a long time been to encourage the use of this data”

Controls may be in line with policy and the law, but I believe it simply hasn’t kept up with the functional need for a decent governance framework.

Julie Brill’s Statement made a recommendation:

“A second accountability measure that Congress should consider is to require data brokers to take reasonable steps to ensure that their original sources of information obtained appropriate consent from consumers.”

Accountability in the UK of these data brokers seems quite absent in real terms, unknown to the public at large.

The same core issue identified by Julie Brill in the US, lack of informed consent. If we don’t know you have it, how can we ask to check if it’s correct or who uses it? In an era of borderless electronic data transfers, we should seek to put in place the highest standards as common denominators, and in terms of privacy, there are lessons worth learning from the US actions post Snowden which in the UK, we have not yet begun.

If our health records should sail off in the flagship care.data programme, on the sea of commercial Big Data, are we confident that there is consent, fair processing, transparency, accountability, security and good governance? We must know that these basic mainstays are in place, and will stay so in future, to give it our support. Well governed data is more likely to get our trust, therefore our consent and be of better quality for buyers.

We must also not forget to clarify why it is our records are needed in the broad and undefined care.data scope that we still have not seen pinned down. Is the public good really defined for care.data and does it outweigh the private long established rights of consent and confidentiality? Do we trust these commercial company uses to do “no harm” as the US Commissioner of the Federal Trade Commission examined?

…”the profiles have the ability to not only rob us of our good name, but also to lead to lost economic opportunities, higher costs, and other significant harm.”

When we visit a medic we are vulnerable, ill or in need of help. We entrust our knowledge in confidence, and trust it will be used for our care. A whole hotchpotch of other indirect uses, including commercial exploitation is not what we expect. We need to trust the data we give away to local staff,  is processed appropriately all the way up the data chain, when it is stored, when it is released and beyond. For now at least, it appears citizens can only control the one point at which we first give our data up. After that, we have faith that those governing our data ensure the processes around its management are worthy of that trust. The governance processes that go beyond the HSCIC control, will directly influence that trust, and our care.data decision to object, or not.

For citizens to see this still precarious commercial hull, and trust that our innermost confidences should be safe within it, is stretching our trust, just a little too far.  The knowledge of our health and lifestyle should not be commercially exploited in this uncontrollable marketplace by data brokers without our knowledge and consent.  Health data is on the cusp of including more widespread biomedical data. In my children’s lifetime that may be a whole new era of data management to contend with. For now,  all this intensive data mining may be much more than we already imagined and we should carefully consider how society will be affected if it includes every aspect of our health and lifestyle data. It may be yet another aspect of individual surveillance more than society can stand.[18]

The care.data storm may not yet be over.

*****

In part three on commercial uses, I’m going to explore, from my lay perspective, on how some of these intermediaries and data processing companies, use data concretely in practice. As Julie Brill says how these intermediaries, “create a narrative about our past, present and even our future lives.”

******

[1] Data Brokers: A call for transparency and accountability – http://www.ftc.gov/system/files/documents/public_statements/311551/140527databrokerrptbrillstmt.pdf

[2] Food Marketing film by Catsnake with Actress Kate Miles via Upworthy  http://www.upworthy.com/no-one-applauds-this-woman-because-theyre-too-creeped-out-at-themselves-to-put-their-hands-together

[3] Your Credit Ratings explained BBC http://news.bbc.co.uk/1/hi/business/2963580.stm

[4] “Mosaic is Experian’s most comprehensive cross-channel classification system …it helps you understand consumers in extraordinary detail.” http://www.experian.co.uk/marketing-services/products/mosaic/mosaic-in-detail.html

[5] Flagship care.data – Commercial Uses in theory: https://jenpersson.com/flagship-care-data-precious-cargo-1-commercial-uses-in-theory/

[6] Health and Social Care transparency panel:- minutes from 23rd April 2013 –  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/259828/HSCTP_13-1-mins_23_Apr_13__NewTemp_.pdf

[7] 17th March Omega Solver in the Guardian, by Randeep Ramesh http://www.theguardian.com/technology/2014/mar/17/online-tool-identify-public-figures-medical-care

[8] 16th March Harvey Walsh in the Sunday Times by Jon Ungoed-Thomas  ‘healthcare intelligence company, has paid for a database’ http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1388324.ece

[9]  The Privatisation of the NHS Prof.A.Pollock at Tedex event

[10] HSCIC Data Register http://www.hscic.gov.uk/dataregister

[11} Evidence at Parliamentary Health Select Committee April 8th 2014: http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/handling-of-nhs-patient-data/oral/8416.html

[12] Care Bill 2014 – Enacted: http://www.legislation.gov.uk/ukpga/2014/23/section/122/enacted

[13] care.data in their own words – D. Gillon Where’s the Benefit? http://wheresthebenefit.blogspot.co.uk/2014/03/caredata-in-their-own-words.htm

[14] Public vs Private interest – Dr. M Taylor, “Information Governance as a Force for Good? Lessons to be Learnt from Care.data”, (2014) 11:1 SCRIPTed

[15] Fume Cupboard access in NHS England stakeholder  letter April 14th 2014

[16] Letter from Jeremy Hunto HSCIC regarding patient confidentiality

[17] Health Service Journal, June 12th, Nick Renaud-Komiya, http://www.hsj.co.uk/news/trusts-ordered-to-delete-incorrect-data/5071902.article?blocktitle=News&contentID=8805

[18] John Naughton, Observer 8th June, http://www.theguardian.com/technology/2014/jun/08/big-data-mined-real-winners-nsa-gchq-surveillance

#caredata, care.data, commercial, HES, HSCIC, NHSEngland, scope, trust

Flagship care.data – precious cargo [1] & commercial uses in theory

“The challenge is that if many users of data are intermediaries with re-use licences and even the HSCIC doesn’t know who all the end users are, how on earth can anyone judge how they will be for purposes of ‘improving NHS care’?”

Commercial and third party use is one of the most damaging aspects of the rollout which is wrecking the care.data programme.

I’ve cut my opinion on this care.data topic into two parts, theory and practice, to address the outcomes of the LMC conf of yesterday from a patient POV. From my lay perspective, the result of the debate and votes was partly due to the failure to shore up the policy theory around commercial uses to make any perceivable improvement to trust for the future. And partly based on proven failures in practice to protect our data in the past. Failures around commercial use of care.data in theory and practice.

The theme of making money, is a recurring topic for women in literature, and graced or should I say, grubbied  our screens in recent weeks in the adaptation of Dame Daphne Du Maurier’s Jamaica Inn.

Mary Yellan, orphaned and without means, seeks the only family she has and lands among the smugglers and muddy marsh of the Cornish moors. It’s not only set against a backdrop  of smuggling, but wrecking. The heroine struggles between moral conflict and practical necessity, whether to join in their activities, against her ethical principles.  She gets used to it but ultimately can’t live with it.

Given that the real inn is in the middle of a very bleak moor, with no outlook except the rough shorn grass, you need to really see unmet potential to want to be its new owner. For that, you need to see strong commercial opportunities or be a committed hard core Du Maurier fan. Or both.

So it can appear, from a patient point of view on care.data. Either the driving parties promoting the release of patient data see unmet potential [1] which needs commercial harnessing [1b], have direct commercial interests[1c], or they have another personal interest in its extraction and access. Or perhaps they are just hard core fans of data sharing, to the point that we should support mashing our health data up with commercial retail loyalty cards as Mr. Tim Kelsey suggested in November 2013 at Strata [from 16:00] [2].

Are the same people and organisations driving the programme and calling for ‘data for patients’ not also the same who will benefit most from having access to the data? The measurable benefits to us patients remain unclear, at best. The cost, our confidentiality and GP trust, is however clearly non-refundable. Consent, the age old pillar of medical ethics is to be waived aside. The LMC Conf obviously see value in protecting confidentiality at source if it cannot be guaranteed by others, whether the HSCIC or the data users.

Who will all the end users of our data be? They remain somewhat undefined, because the care.data addendum including Think Tanks, commercial companies and information intermediaries was not approved [3] and because future users are undefined in social care, for example. Future scope will entail additional future users. But then perhaps this should not surprise us that NHS England and the HSCIC expect us to acquiesce to this fair processing failure although we don’t yet know all the future end users, because Sir Kingsley Manning admitted that HSCIC does not know who all the current end users are either (Q272) [4a] at the  Health Select Committee hearing. So, were the GPs at LMC Conf just expected to trust ‘on spec’ to whom their approval of care.data would entitle its sharing?

Information intermediaries in particular, seem to still be on the key stakeholders list[5] in January 2014. But only a year ago, in April 2013, The ‘Health and Social Care Transparency Panel’ discussion on sharing patient data with information intermediaries clearly stated there was no legitimate or statutory basis to share at least ONS data with them. [6]

“The issues of finding a legitimate basis for sharing ONS death data with information intermediaries for commercial purposes had been a long running problem. A number of possible approaches had been considered but advice from the relevant Government legal teams was that there did not appear to be a statutory basis for doing so. The panel identified this as a significant barrier to developing a vibrant market of information intermediaries (IIs). It also limited the ability of IIs to support NHS organisations with business intelligence to evaluate and benchmark the quality of their services.

It was agreed that this issue needed to be resolved, and if necessary changes to the relevant legislation should be considered. ” 

I would love to know whether the law changed in the last year, how was the issue resolved, or has HSCIC and have we just through use, acknowledged that this sharing with intermediaries is acceptable and legal? The meeting later in July should have given clarity, but I can’t see minutes beyond April. They are no doubt somewhere, and someone cleverer than me, can help find them and clarify how the decision was reached I expect. I did find notes in the recent HSCIC audit of past data releases [4b], that ONS data was granted under existing law after all:

“The ONS data are supplied under the Statistics and Registration Service Act 2007 section 42(4) as amended by s287 of the Health and Social Care Act 2012, for the purpose of assisting the Secretary of State for Health, or the Welsh Ministers, in the performance of his, or their functions in relation to the health service.”

Since the Health and Social Care Act revoked the Secretary of State’s duty of care to provide a national health service, I wonder what functions it relates to as pertains to third party intermediaries? The ONS application form is detailed but no more enlightening for commercial intermediary use. I can’t help feeling we’re seeking justifications rather than good cause as the starting point for widening data releases. That we are starting to accept that our hospital records have been shared without our consent and sold. (Let’s give up the recouping costs word play, call a spade a spade. Data and cash change hands.). ‘What can we do about it anyway? we may well ask. As time has gone on in the care.data debacle, and in the three months since the delay, it appears from the leadership comments of NHS England from Mr. Kelsey in Pulse that, we’re not to worry, “now we are working to make care.data safe.” [free registration required] Still no one has said, we made a mistake of its handling in the past.

This acknowledgement however that work needs done to make the data safe, underlines exactly what so many saw months ago including the GPES advisory group which had concerns [17] in Sept 2013 on commercial uses and its communication, governance and patient trust. Care.data was launched regardless. Now it’s grounded.  What has improved since then? What remains to fix?

How well exactly did HES storage and sharing work so far, with breaches identified as well as the basic legal fair processing failing to inform us of its extraction? What has been done to prevent it happening again? I have seen no concrete steps which give me faith the past flaws have been fixed enough to now trust it in future.

In February, before the pause Jeremy Taylor of National Voices wrote a very sound 12 point plan of what needed to change.  Since then, what has actually  changed [7] as far as I can see, is only the introduction of a delay, and that his words were listened to, that there should be no artificial deadline:

‘”the timescale for launching Care.Data was entirely artificial, as is the six month “pause”.

Three months into the delay, nothing of substance other than agreeing there is no artificial deadline, appears to have changed.

The most significant past let downs have all been commercial or third party uses. OmegaSolver, Beacon Dodsworth, PA Consulting,  Earthware.

The Care Bill amendment touted as a change in the legal protection of our care.data, does not block commercial Third party intermediaries sharing care.datauses of our data, only stating that it should be used ‘for the promotion of health’ which is open to all sorts of interpretation. Not least I imagine, those similar to ‘fight against obesity’ campaigns by marketing masters of commercialism.

So with little transparent change on policy, since we have become aware of data breaches, misuse and patient anger about commercial use, it should come therefore as no surprise that the BMA Local Medical Committees (LMCs) yesterday voted to state a preference for opt in not opt out, pseudo or anonymisation at source and insists that care.data should only be used for its stated purpose of improving health care delivery, and not sold for profit.

Simply: the public don’t trust that our identifiable data is protected and we object to all our data being traded commercially.

This is in direct conflict with HSCICs stated purpose in the HSCIC 2013-15 roadmap [8]:

“Help stimulate the market through dynamic relationships with commercial organisations, especially those who expect to use its data and outputs to design new information-based services.”

And in statements by both Sir Manning at the Health Select Committee and Dr. Geraint Lewis [9]:

…”we think it would be wrong to exclude private companies simply on ideological grounds; instead, the test should be how the company wants to use the data to improve NHS care. And, as Polly Toynbee put it, if “it aids economic growth too, that’s to the good.”

The challenge is that if many users of data are intermediaries with re-use licences and we don’t even know who all the end users are, how on earth can the HSCIC judge how they will benefit ‘improving NHS care’?

As regards economic growth, if the aim is to give away data for free, as Mr. Kelsey told the September 13th NHS England board (from 26:10)[10], how is the NHS to make profit from it? It’s not. Commercial companies are to buy at prices only to help HSCIC recoup costs [11], so that is not technically opposed in wording to ‘ not making a profit.’ Citizens, GPs and others can be aligned with that on paper. But not in spirit. For now commercial companies profit from our state funded records, paid for by NHS DoH money.  They profit intermediaries with re-use licences beyond which we have no visibility or control of where our data goes or why. And the fact that the wider profiting third parties from the whole scheme,  ATOS paid zero tax in the UK in 2012,[12] really grates. How does the cash given to ATOS benefit economic growth in the country?

Therefore, for the LMCs to have voted now any differently, would have expected them be soothsayers, knowing that the care.data work-in-progress and any future changes will make both the future scope purposes and future users clearly defined, in order to fulfil their duty as data controller, ensuring patients have a reasonable expectation of how their data will be used. It asks GPs to betray their age old fundamental principle of medicine, to betray patient confidentiality, for commissioning. They are being told to betray the good ethics of consent.  They are being asked to betray patients’ trust and even to use that trust to ‘sell’ the idea in which they may not believe.

And care.data current processes betray the best practices of data collection – seek to collect the minimum data required, for a specific purpose and delete it when that is completed.

“Personal data processed for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes’ consistent with the Data Protection Act principle 5. [13]

Instead HSCIC’s remit over the coming years of care.data is to fill in all the remaining gaps with any health and social care information not already collected [14], and keep it linkable from cradle to grave – or even from “germ to worm” for everyone with an NHS number in England. Purposes are non-specific and unlimited because they’ll change over time and the end users are not all defined for it plans to be opened up increasingly widely for use in social care and we don’t know what else.

caredatatimeline

 

In my lay view, the BMA LCs had no choice in the interests of their patients but to call for a rejection of assumed consent and commercial uses. The two do not go together. Opt out for uses of our data purely for NHS care and its planning would be much more palatable. But add in commercial uses, which is what has both been the main source of patient objection and data breaches, and it’s a deal breaker.

They can’t stake their support and reputation on a best guess of what might be. They can only base their judgement on what they know now. And no one supports care.data exactly as she is right now, which is why it is postponed and work in progress. Shore up trust, governance and axe these commercial uses and perhaps an assumed consent would seem more palatable. For example, Cross border governance needs documented when the application form gives non UK options. Scope and users need defined to ensure proper fair processing to meet DPA ICO requirements [16]. But so far, nothing has visibly changed.

It’s no different from when Ben Goldacre was telling us public trust cannot be easily regained and it broke his heart [15]. I know why, there are expected benefits to public research amongst others to access primary care data more than they already have in CPRD or pseudonymous data in QResearch and others, but we need to act based on today’s approved uses for care.data, not what might be remain in an undefined future. Right now, we’ve seen no changes of substance since the delay was announced.

NHS England can’t therefore genuinely expect to see a shift in trust in citizens or GPs based on nothing more than lines in the sand.

I believe GPs at the LMC Conf took the best decisions they could with the programme in its current form, with knowledge of past problems and lack of future clarity over scope and users.

They voted for how they feel best protects, respects and empowers their patients.

If our current Data Controllers and  guardians of confidentiality don’t stand up for patients to get the build of the infrastructure right before they agree to release our data to fill it, who will? The question will be whether the Secretary of State and NHS England will force their legal right of extraction through regardless, or will respect the medical profession’s representatives and the rights of citizens they care for?

There is an opportunity to fix things. The LMC Conf after all have no legal efficacy, they stated their opinion and stance which commands respect and attention. Flagship care.data is not washed up, yet. But it can’t sail without addressing governance and professional support. Commercial exploitation and assumed opt in are not going to work comfortably together. Transparency of who has access to what data for what purposes and how it is released needs sharpened up. And regardless of whether opt in ever comes onto the table or not, if care.data keeps her strongly  commercial heading many, many more will jump ship to opt out. The damage of bias will be done, either way.

She needs some new directions, helmsmanship that we trust and sound repairs.

********

If you have missed the background to this saga, I’d recommend the Julia Powles article in WIRED – what to save when the care.data ship goes down.

I’m going to look at some more of the commercial uses of care.data in practice another time. And clarify the communication of the opt out codes and why research purposes is a misnomer in the GP patient record sharing part of care.data purposes – it’s not (yet at least) an approved use.

********

[1] MOU between AstraZeneca and the HSCIC, December 2012

[1b]  ABPI Vision for harnessing Real World Data 2011

[1c] Hansard, Nov 2010 George Freeman ‘I know from my own experience that we are sitting on billions of pounds-worth of patient data. Let us think about how we can unlock the value of those data around the world.’

[2] Strata November 2013, Tim Kelsey keynote ‘mash it up with other data sources to get their local retailers to tell them about their purchasing habits so they can mash that up with their health data’

[3] care.data addendum Sept 2013

[4] Written Hansard of the Health Select Committee , 8th April

[4b] The HSCIC data release register issued on April 3rd 2013

[5] Oversight panel with input from Dame Fiona Caldicott, January 2014, with stakeholders’ list

[6] Health and Social Care Transparency Overview Panel April 2013

[7] National Voices – Jeremy Taylor, an excellent overview of 12 points which needed fixed from February 2014

[8] HSCIC 2013-15 Roadmap

[9] NHS England comments by Dr.Lewis on commercial principle

[10] September 13th 2013, care.data directions approved by the NHS England Board – care.data from 25:40 – 39:00 – note identifiable, not anonymous data is extracted and stored with the DLES at HSCIC, and GP objections to date on care.data opt-in seem not to have been respected in contrast to the claim ‘GPs make a decision’ from 31:00. There is to date, no communicated way to prevent HES data extraction and its sharing in pseudonymous form.

[11] The HSCIC Data Linkage price list

[12] The Independent, November 2013 Atos & G4 pay no corporation tax in 2012, National Audit Office stats via Adam Withnall, The Independent

[13] Data Protection Standards – retention, principle 5

[14] care.data programme overview April 2013

[15] the Guardian, 28th February 2014 – care.data is in chaos – Ben Goldacre

[16] Blog from the Information Commissioner’s Office on care.data Data Protection and Fair processing

[17]The GPES Advisory Group meeting minutes Sept 12th 2013

{updated 28th May – looks like past uses of our health data are now also under scrutiny by ICO which is investigating claims that insurers have accessed full medical records using subject access requests.}

By [email protected]
#caredata, communications, leaflet, NHSEngland, scope creep, trust

Care.data – Getting the ducks in a row

Good Friday has different meanings and traditions across the cultures. For some the most sombre day of their church calendar. For others, another Bank Holiday and start of the long weekend in spring. For Mr.Cameron this year, getting stung by a jelly fish abroad.

For me, visiting family in a small nordic village, it’s the day of the annual duck race fundraiser.

2,000 numbered plastic ducks are thrown into fast moving water high upstream, and the public waits and watches anxiously as the toys approach the central village bridge and race beyond. The first to hit the finish line net at the weir after an arduous course, is the winner.

There are lots of obstacles along the route and some ducks get stuck. Children are allowed to pick up those off-track in side eddies and hurl them back into the main channel. As a parent, you inevitably lose your child at some point in the crowd, fret they may have joined the ducks for a swim, and the whole race always takes longer than we expect.

So, it feels, as a citizen and patient, is the current progress of care.data.

There was a misjudged start. There’s lots of obstacles still to overcome. It looks like the finish line is getting clearer. And some believe it might take longer than first thought.

Whilst on holiday I’ve taken time to read over the recent letter, to colleagues, from Tim Kelsey & NHS England. It’s addressed to colleagues, which I’m not, so perhaps it feels a little like looking over someone’s shoulder on the train, but hey, It’s the only update we’ve got.

Looks like some positive acknowledgements and steps are in progress:

  • We will work with stakeholders to produce support materials, such as an optional template letter for patients and ways of making opting-out more straightforward
  • We need to do more to ensure that patients and the public have a clear understanding of the care.data programme
  • This work is continuing and we will update you on these changes separately 
  • We want to hear your views and suggestions so we can take action to improve and build confidence in the care.data programme. We will also be engaging with patient groups, GPs and other stakeholders through local and regional engagement events

Notably, it’s the first time NHS England has said opt out. In the past it has only ever been an objection. As a linguist, language is important to me. And the two are not synonymous no matter how often I may be told by NHS England that they are to be used interchangeably.

It’s the first time there really feels like more give, and less we’ll take without asking you first.

And it’s the first mention towards offering local and regional engagement.

There are some new hints which need explanation, such as a change towards who may use the data – described always as for secondary uses, clinicians and patients using it is new:

“Care.data is an initiative to ensure more joined-up data is made available to clinicians, commissioners, researchers, charities and patients.”
And there are some ideas which are making progress, but seem a little stuck.
“In addition, steps have already been taken in making changes to the law”…

Whilst changes have been put into the Care Bill, other rather sensible ones, such as legal penalties for data misuse were rejected. And the purposes are still so loose as to be possible to give data for a wide range of ‘health purposed’ clients. That was the day in which it appeared fewer than 50 MPs were in the chamber to hear the Care Bill debate in which nearly 500 came in to vote. (How they can reasonably and effectively vote on something in which they did not hear the debate, I don’t understand.) These are legal changes I believe which need hurled back to Parliament to get them on track again.

Experts much wiser than me, have made a proposal of comprehensive amendments, and seem, from my lay understanding, both really positive and practical.

The “optional template letter for patients” may be something GP practices could consider using to contact individuals where they know that leaflets were not delivered. Even Dame Fiona Caldicott did not receive hers. (BBC PM listen from 33:30)

If centrally, it is known where they did not reach patients, it would be helpful for GP practices to then be able to evaluate if there is an additional need to contact their patients. For example, in my area, no one I have spoken to received a leaflet.

Perhaps that might seem trivial now, and in the past, but for trusting the scheme I believe it is really important to know why that was. Because since no opt out was originally planned I want to know that the intention was truly to tell us all. Did they print enough? Distribute enough? Follow up at all? I’ve asked to find out.  After all, it was our state money that paid for it. A previous Freedom of Information request, on the status of its distribution with Royal Mail, from Phil Booth of MedConfidential appears to contradict ministerial mutterings that said an exception was invoked. I know that for myself, I had not opted out of junk mail, yet I still didn’t get one. I knew to look out for it and inspected my pizza flyers and dog walking leaflets in every post in January. No leaflet and all of my friends were the same.

If the experts such as Dame Fiona, the GPES advisory group which in September had:

“major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”

and ICO felt the leaflet went out with the wrong content and was rushed then I want to know why, so that the same people are not making the same decisions, and will cost us time and trust again. Why it went ahead against every expert’s better advice is important to understand. “Regrettable that you are not now able to take any of our comments into account” was ICOs comment and the sentiment seems echoed by Dame Fiona on today’s radio broadcast.

Even a lay person like me, could see it was a disaster about to happen.

My suggestion, was that role-based patient communication would be much more understandable. Take some stereotypical sample citizens, map their ‘day-in-the-life’ using HSCIC data systems, show how these interactions send data to HSCIC and map them to show what data is extracted and where it goes, is stored and may be viewed and distributed by whom. There are an awful lot of individual scenarios so no model may match any real patient experience, but looking at it backwards, take all the HSCIC systems and extract a situation which would send the data up. A&E, School nurse, Electronic Prescription Service, Choose&Book, GP screening. Mental health call centre. It would be possible.

People should know what data, is extracted when, why and who will use it. Visuals are better than words. The leaflet failed in the case of care.data, but would an individual letter have achieved more, in just a few sentences?

More has been achieved to raise our awareness of the Health and Social Care Information Centre and Government uses of our health data, through all the hoo-ha in the press, and the re-tweet by David Nicholson of the care.data downfall parody, than by the original leaflet. Perhaps the leaflet’s measure of success was not intended to be a 100% reach at all. I hope we’ll understand more soon.

(** for updated thought 19th April see note below.) Should we presume an ‘optional template’ means that no paid letter will be provided from NHS England to all? GP practices may decide to use the ‘optional’ template to send out letters now. Professor Mathers had called for one. But I wonder if GPs themselves will be expected to bear the cost, of an imposed central initiative for which there is no choice to participate and yet the GPs are legally liable Data Controllers for complaints? If no funding is offered, and GP practices decide not to send letters out, it would seem a risk trade off. The risk of a patient complaining or indeed legal action, if they did not know their data was going to be extracted and and potential risk for harm ensued. Yet fair processing should be a Data Protection Act requirement. But is it for care.data?

This week also saw the list of number of patients published by GP practice. Helpfully with postcode. So if my practice were to want to post a letter to every patient in my area, at 53p second class, it would cost around four thousand pounds. I don’t know if they get any bulk discounts and one per household might reduce numbers. But that’s a lot of money – but perhaps (**) it may be covered centrally after all, though the letter does not indicate that? (I now also know how few over 90 yr old men are registered, if interested).

It seems like there is much positive going on in the undercurrents of the care.data developments, which the general public cannot see, such as the care.data advisory group work-in-progress.

There would seem much which needs work in a very short space of time for relaunch in autumn. But if Dame Fiona Caldicott, Chair of the panel set up to advise NHS and Ministers on the use and governance of patient information, said she thinks we need longer, then I am sure she is right. To take as long as is needed to get it right would seem sensible. To rush and fail a second time, would be irretrievable. Surely, her advice would not be ignored again?

The HSCIC this week also released the Framework Agreement between the Department of Health and HSCIC. 

It will be interesting to see if this affects and changes the HSCIC roadmap. In my opinion, it should. The care.data addendum to widen commercial uses was pushed back but is still to resurface. There is still no clarity around commercial re-use licenses. These commercial drivers should come out if Mr.Hunt’s rock solid assurance is to be believed which, “puts beyond any doubt that the HSCIC cannot release identifiable, or potentially identifiable, patient data for commercial insurance or other purely commercial purposes.”

At the moment I would hope the HSCIC roadmap would change in its commercial focus:

“especially in relation to the potential sale of data”. 

“Help stimulate the market through dynamic relationships with commercial organisations, especially those who expect to use its data and outputs to design new information-based services.”

It remains to see if it does.

That framework is a good read with a hot coffee (and a short snaps if you are where I am). What’s missing for me, is any reassurance at all that the HSCIC will remain public. There is a large chapter on what process would need to be followed if it were to change structure or be merged. And therefore does not rule out a private owner of the single central repository for our health, social care, research and recipient of integrated ONS data in future.

“Any change to its core functions or duties, including mergers, significant restructuring or abolition would therefore require further primary legislation. If this were to happen, the Department would then be responsible for putting in place arrangements to ensure a smooth and orderly transition, with the protection of patients being paramount.”

It would appear to me, that a future intent to privatise the ownership of care.data and more could remain open. Certain aspects of the day-to-day functions were potentially to be outsourced in a past ISCG roadmap. I would hope the core will remain firmly State owned.

Bizarrely, duck races are not treated equally across the globe. Wisconsin recently repealed their ban. It seems almost as bizarre, as the idea of selling our taxpayer financial and VAT data. Or our school pupils personal details. I wish I could say, one of these stories were not true.

What the duck is going on with Government’s attitude to our personal data?  The Cabinet Office seems to be failing to give out legally required Freedom of Information responses, and yet happily selling the knowledge of our health, wealth and our children?

“These regulations also allow the department to disclose individual pupil information, subject to the Data Protection Act 1998, to named bodies and persons who, for the purpose of promoting the education or well-being of children in England are conducting research or analysis; producing statistics; or providing information, advice or guidance. The department may decide to share pupil and children’s information with third parties on a case by case basis where it is satisfied that to do so would be in accordance with the law and the Data Protection Act, and where it considers that such disclosure would promote the education or well-being of children.”

So if McDonalds wants to run a healthy eating campaign, would they qualify?

Open Data does not equate (must read) with being open with all of our data. Tables and summaries at aggregated level of statistics are nothing to do with individual level data. Before any Government body considers if they should enable private and other organisations to use data more freely and effectively, and their stance on charging and profit from use of data, they should think twice.

Remember the daft Deregulation Bill 162? It revokes the need to sell pre-packed knitting yarn by net weight and other nonsense. Perhaps it is the ‘Exercise of regulatory functions’ which is the root cause of much of these  issues on the monetisation of our data:

Clause 63 provides a power for a Minister of the Crown to issue guidance on: how regulatory functions can be exercised so as to promote economic growth;

Sections 60-67 of the Deregulation Act currently passing through Parliament allow the removal of any regulation that conflicts with the interests of a profit-maker. If your body manages data, there’s really only going to be one way to meet the obligations of Bill 162. Sell it.

Someone needs to tell all the departments, if you have any chance at all of getting care.data through to the finish line, stop giving away or selling any of our personal data which we trusted you with for an entirely different original purpose.

Whilst there are many people working on many manoeuvres to get all the ducks ready to relaunch for care.data, the Government has to pay attention to the whole race. If we lose faith in the Government to make wise decisions on what will be done with all data we share for a given purpose and find later it is given to others without our knowledge, we won’t trust it with our health data. If the data warehouse may one day be sold off, then all the gameplanning and rules in between will appear to have been pointless.

This is not a race to the finish with the least bad option. Care.data needs to be exemplary if it is to have any chance of reaching the podium as the world leader in patient data-sharing management. It’s got one second chance to get a relaunch.

Without public trust it will flounder. Without GPs to patient communications thoroughly thought out it and funded, it is destined for a rough ride. Without further legislative changes, it’s not going far enough to be convincing of real commitment to change.  Without these three, it will not reach the finish line.

The best summary of why we need still much work and how to respect so many of these under good governance, came out this week, from the Chair of CAG. “However, we cannot expect to have all of the answers in six months time. The commitment must be an ongoing one to continue to consult with people, to continue to work to optimally protect both privacy and the public interest in the uses of health data.”

So between Dr. Taylor and Dame Caldicott the wise seem to indicate more than 6 months is needed.

There are encouraging signs, but many issues don’t seem to be addressed yet at all, from the recent NHS England letter nor Framework Agreement. Above all, in common with the tax data sharing, pseudonymous is not equal to anonymous. It’s not only what HSCIC currently determines as identifiable, which we need vital improved governance to protect.

In any upcoming public communications, I pray don’t patronise the public saying that ‘name and address will not be extracted’ as the last FAQs and poster did. Explain instead what the Personal Demographics Service stores already, educate us how the PDS and linkage works and why. Details like this must not get lost in any rushed relaunch.

And other departments’ decisions must not put it in jeopardy.

Whilst care.data is getting its ducks in a row, the wider Government approach to data management seems to have gone, I can’t help but say, absolutely quackers.

——-

** 19th April Update: This via twitter comment says, if GPs get patient letters made available they only have to address them to send to their patient list. Will this happen in this case? Good news for informed communications? Let’s hope so.

#caredata, comm consent, communications, confidentiality, HSCIC, National Pupil Database, NHS, NHSEngland, pupils, school. daag

No Security Blanket – why consent packages fail our children – care.data and more

As a mother, I want to know that my children’s personal data, when it is collected by any organisation, will be kept safe and used in ways I would expect. I see it as my responsibility safeguarding my children today, to also think of their future.

We should seek to protect the fundamentals in the Universal Declaration of human rights for all:

Everyone in the community should find the free and full development of his personality is possible. Everyone has the right to work, to free choice of employment.

In effect, these basic human rights seek to prevent discrimination and interference.

But it feels as though the world around us in England has gone mad. Risking stigma, discrimination, giving our kids’ personal information quite freely away and with it, their future autonomy.

Here’s five recent case studies and why they fail our young people.

The Department of Education’s National Pupil Database & Personal Demographics Service

What About Youth is reportedly using contact details directly from the Personal Demographic Service (PDS) data stored at HSCIC and the schools’ database, the Department of Education’s National Pupil Database, and giving them to IPSOS Mori, the poll research organisation to carry out the What About Youth? study on behalf of the Health and Social Care Information Centre, funded by the Department of Health. To contact our 14-16yr olds directly.

“Your contact details were taken from NHS Registration data, held by the Health and Social Care Information Centre and the Department of Education’s National Pupil Database, which contains details of every pupil in England. The NHS Registration data has been used as it is a reliable source of details such as name, address, date of birth and NHS Number. It does not include any medical data so we don’t know anything about any illnesses or conditions you have had or received treatment for.

We have received approval to use your contact details only for this study. We won’t be using them for any other purpose, nor will we share them with anyone else. “

I don’t know that any parent would find that an expected use of their personal contact details to be contacted by the third party directly.

How is the questionnaire coded I wonder, whilst “the answers will not have the child’s name and address on, so no-one who sees them will know whose they are,” the “aim of the study is to make it easier for doctors, nurses and local authorities to help young people.” So it would appear Local Authority is going to be coded at least. And your individual postcode. And child’s age and gender and ethnicity and more.

If the child (14-16yr olds) agrees to being re-contacted, I would want to know as a parent exactly how, when and for what. But parents are encouraged not to influence the child completing the form, so we may never know. The survey asks about all sorts of insecurities, not all of which I believe every 14 year old will have yet considered. Is it right that the State should intrude with these topics into my child’s private time and thoughts? The content deserves scrutiny from parents before the children are involved. At least, not done in school, we get a letter and know about it at home.

But how can the project ethically ask my child to give their consent to share intimate details not only about themselves but about our whole household and potentially agree to future contact, whilst expressly asking me not to be involved in the decision?

I wonder how pupils will feel whose parents suggest they would prefer their child does not complete it?

Surely if the Department of Education’s National Pupil Database is obligatory it should not assume OK to give out personal contact details to anyone? Some families choose to be ex-directory. Does the cross-purposes use of the Personal Demographics Service make that now impossible?

Should our children and parents, who trust that their personal details are used for registering for the basic rights of health and education, not be allowed to trust those contact details are held in confidence, rather than shared with third parties?

What is the government thinking about, as it manages our young people’s data privacy?

The National Citizen Service and Health Data stored at the Health and Information Centre

While I was looking more closely at the DAAG (HSCIC) minutes this week as related to care.data, I looked at the approval for consent advice and request for future data linkage with the National Citizen Service (NCS) project, open to all 16 and 17-year-olds in England. The request checked that the consent was appropriate for future sharing of Mental health and Hospital Records with the Cabinet Office.

While I was at it, I took a look a close look at the NCS sign up process. At the bottom of the online register in small print was the required check box to proceed:

I agree to my personal data being stored, shared and used by the NCS Trust and other organisations to inform me of NCS and graduate opportunities and to support the delivery of NCS and its graduate programme. I agree to the NCS Terms & Conditions and Privacy Policy.

Then you need to click down twice, to the T&C and Privacy Policy.
From the Terms&Conditions we need to take another step:

Information about you : We will never pass any details you provide to us on to anyone other than those specified in our privacy policy.

You also need to go to the separate Privacy Policy. which turns out stating there is virtually nothing private about managing your personal data after you enquire at all – but is in fact a  ‘Data Sharing Policy’:

 “By submitting the Expression of Interest form you agree to your personal data being stored, shared and used by the NCS Trust (the data controller) and the following organisations: NCS contractors and their sub-contractors, government bodies, strategic partners of NCS, fraud detection organisations, organisations supporting the delivery of NCS or other organisations (including any organisation running or supporting all or part of NCS in the future).”

You must agree or cannot proceed with the application.

Where does the consent to link to a child’s medical Mental Health and Hospital records get asked I wonder? Does it get expressly asked later in the project or on paper because it does not get asked online in the Young Person nor the Adult/Guardian’s sign up. Is this the consent process the DAAG approved? Is it just meant to be included in the blanket “government bodies”? Perhaps the wording is still to be amended?

Sign the child (and your own ‘Guardian’ details) up for NCS and there is no choice but to accept that data sharing agreement. You must accept it to sign up for the programme but there is an open ended who, when and for what in the blanket consent …”supporting all or part of NCS in the future.” The NCS sign-up and consent doesn’t explicitly mention sharing data with named sub-contractors anywhere either.

The charities involved may do great work. But why Serco? Is this the organisation that we would wish to be managing our young people’s personal data? Think I agree with Navca on this one. By signing away rights …”in the future,” we have no idea WHO will own the data  later.

Should our children who need this NCS programme most, not be allowed to particpate unless their personal and potentially medical details go to all these unknown future places?

UCAS and student applications – further education

When I read recently in the Guardian about Ucas selling student records of our under 18s applying to university I was equally surprised.

At a time when teen deaths from alcohol consumption often mixed with energy drinks appear regularly in the news, it is highly irresponsible to me as a parent, to know that a commercial company promoted new energy drinks by sending cans to 17,500 selected students in order to create a “social media buzz”. I know from my own experience, university is often the place we are first exposed to a regular bar life. And so does business.

This goes far beyond the scope of what our teens signing up should expect their data to be used for. Who will decide what products and what uses of data will be acceptable in future?

I am fed up of these blanket consent approaches which deny a service unless we also sign away the knowledge of our personal habits and preferences for others to commercially exploit.

This mixing of purposes in which data privacy is to one’s disadvantage, is an abuse of trust. And it is the importance of trust and exploiting mixed purposes, which for me, has been so starkly highlighted in the management of our medical records.

Dental Service – the NHS Business Service Authority


When I signed the form to pay for my recent dental treatment I read the small print. The Dental Admin Assistant shared my surprise to find that the data processing takes place outside the UK, and requires data sharing with processors in ‘India or Sri Lanka.” WHO WILL USE IT WHERE and FOR WHAT PURPOSES? I am required to sign the form to agree to pay for my treatment. It gives permission to share with Dept of Work and Pensions, HM Revenue and Customs, local authorities and CCGS (then PCTs). But why should the one signature to bind them all, mean sending my personal confidential data abroad, outwith EU data laws even?

Is there fair processing on this form, does it indicate properly for what purposes the wide ranging bodies will be given access? Surely they don’t all need it for “fraud prevention and to ensure correctness” about my dental check up?

If the government bodies are all working together and can share data at will under these blanket assumptions, without our explicit consent or knowledge, then a great number of people will be rightly concerned. I am concerned by powers this Memorandum gives NHS Protect and the Border Agency from 2011 and I am a legitimate resident. ” To provide a centre of excellence for NHS anti-crime work by applying a strategic, coordinated and intelligence led approach.”  I only went for a scale-and-polish!

This default to wide sharing seems to be increasingly seen as the norm. Surely it should be assumed that the minimum data should be shared with the minimum necessary recipients? Current policies seem to have confused a drive for Open Data with giving away our privacy.

How could it be done differently?

If I sign a form to pay for my dental treatment, surely it should be only that. If you want other permissions, ask in other check boxes. I believe our NHS should be managing our NHS data within our borders, but that is a separate debate.

This blanket consent approach excludes the service unless you are happy to give open ended access to your personal data to Government and its contractors.

Should I not be allowed to have NHS dental treatment, for which I pay on completion, unless my personal details go to all these other places?

Let’s consider an alternative. Enable the ability to say yes to paying for my treatment, without sharing fully identifiable data with other government bodies or sending it abroad.

It is one thing to share truly anonymised data. And quite another to extract identifiable personal details for at minimum ten years or longer. Time limit the consent.

If the 14-16yr old on the What About Youth questionnaire agrees to ‘future contact’ they presumably are agreeing to  having identifiable data and contact data kept with their answers, to enable that future contact.

If children agree to the NCS blanket sign up, they are signed up for an unspecified time. These sign ups remove our children’s autonomy later in life, and they can never get it back.

Right now, I wouldn’t let my children’s personal data anywhere near any of these systems if I wanted to retain any future control of it at all. But do I have a choice? My children are in school, and that will mean in the Department of Education’s National Pupil Database. And they will have NHS records. I see some subject access requests ahead.

Given past historical purposes of the ONSET project at the Home Office, Contact Point and DWP I would want to keep my kids’ data free from all of these.

Some may ask, why does it matter?

Because this joining up of services is interweaving systems whose aim is on the one hand compassion and care, with those on the other which are punitive and controlling. Their aims are not aligned. And inevitably it is the systems which shout loudest, under any government of the day, whose opinion tips the balance of purpose and decision making. And recent claims of micro managing in Health show, top down control usually wins.

Because I believe the earlier we label our children the harder it is for them to become anything more.  Inevitably labels shape expectations. Not only for the individual but those who interact with them. It is only the very best educators and social care staff or police or medics who manage to put those aside and see the individual in each episode of contact. The future intent for care.data is integration of data sharing between medical contact, social care and education, under local authorities, health and wellbeing boards and more. How far would the impact of one wrong label spread in a child’s lifetime, in different places?

Because our children should enter adulthood with as few restrictions placed upon their development and self-determination as possible. Even, I would argue, those children who need the contact with all those organisations. I could argue, all the more so, precisely because they have those extra needs and contact. They may need excellent care and transition between youth and adult services. They need it facilitated first and foremost by qualified individuals who are trusted to do the job they trained for and have a vocational passion to complete. Yes the staff need data, but proportionate to the individual need, for the time period it is needed. We need to protect the extra vulnerable in many extra ways.

And we also need to protect the fundamentals in the Universal Declaration of human rights for all. Everyone in the community should find the free and full development of his personality is possible. Everyone has the right to work, to free choice of employment. In effect, these basic human rights seek to prevent discrimination and interference.

Our young people don’t care about the risks of personal data sharing?

Our young people are more savvy than we give them credit for. In a world of shared selfies and social media, it can be wrongly assumed that they are careless with their own privacy. This  Electronic Patient Records work run by the Academy of Engineering in 2010, with support from the Wellcome Trust, came out with a report and seven key questions p.39 which are very pertinent today. The young people identified themselves the risks of prejudice and discrimination. The concerns they raise are no different from concerned adults. Our young people are switched on to the risks of personal data sharing.

When it comes to our children’s data, organisations should be going the extra mile to be transparent. I believe they should carefully consider how the public will perceive anything that looks hidden. Consents should be all up front on the top layer of sign up forms. One consent per sentence. If you want to contact my children, ask me first. And if you offer a public service, would you consider first not piggy-backing a commitment to sharing with other bodies or commercial companies on to the consent package?

Why these blanket consents fail our children

These blanket consents are ubiquitous in modern data sharing, from the obvious supermarket sign ups, to which even David Cameron does not consent, to the totally surprising in education and health. Yet he happily signed us up under a blanket assumed opt in to be ‘willing research patients.’ This mixing of purposes under one blanket consent, in which looking after your data privacy is to one’s disadvantage, or criticised as selfish, is an abuse of trust. And an abuse of our children’s future freedoms. They fail to give proper governance of who will own the data once shared. They fail to give proper information of what it may be used for. And they fail to clearly limit the time period for which the consent is given, and after which data will be destroyed.

Not only trust, but the needs of genuine purposes in the public interest are undermined by mixing all these purposes into one consent. Worse still, assuming yes for all these conflated uses unless you opt out.

If there had been singular purpose, care.data would have been easier to understand and less likely to have failed to win our support.

I for one, am fed up with blanket consent. We can do it differently. We can do better for our children.

 

{cartoon: From Al.com via Scott Stantis 2007}