Five months after the most recent delay to the care.data launch, I’ve come to the conclusion that we must seek long-term excellence in its performance, not content ourselves with a second-rate dress rehearsal.
“Sharing our medical records, is like playing Chopin. Done well, it has the potential to demonstrate brilliance. It separates the good, the bad and the ugly, from the world-class players. But will we get it right, or will we look back at repeat dire performances and can say, we knew all the right notes, but got them all in the wrong order?”
The vast majority were from organisations which are data users, some names familiar from the care.data press coverage in spring, [Beacon Consulting, Harvey Walsh] plus many university and charity driven researchers.
Sir Kingsley Manning, Sir Nick Partridge and Andy Williams [The CEO since April 2014] all representing HSCIC, spoke about the outcomes of the PWC audit, which sampled 10% of the releases of identifiable or pseudonymous data sharing agreements for closer review, and what is termed ‘Back Office’ access (by the police, Home Office, court orders) in the eight years as the NHS IC prior to the HSCIC rebrand and changes on April 1st, 2013.
“The standard PwC methodology was adopted for sample testing data releases with the prevailing governance arrangements. Samples were selected for each of the functional areas under review. Of the total number of data releases identified (3,059); approximately a 10% sample was tested in total.” (Report, Data Release Review June 2014)
I believe it is of value to understand how we got here as well as the direction in which the HSCIC is moving. This is what the meeting sought to do, to first look back and then look forward. They are Data Controller and Processor of our health records and personal identifiable data. As care.data pathfinder pilots approach at a pace, set for ‘autumn’, the changes in the current processes and procedures for data handling will not only effect records which are already held, from our hospital care and other health settings‘, but they will have a direct effect on how our medical records extracted from GP practices will be treated, for care [dot] data in the future.
Data Management thus far has failed to meet the standards of world class delivery; in collection, governance and release
It made me think, that sharing our medical records, is like playing Chopin. Done well, it has potential for brilliance. It separates the good, the bad and the ugly, from the world-class players. Even more so, when played as part of suite, where standards are understood and interoperable . Data sharing demands technical precision, experience and discipline. Equally, gone wrong, we can look back at past performances and say, we had world class potential and knew all the right notes, but got them all in the wrong order. Where did we fail? Will we learn, or let it repeat?
The 2.5 hour event, focused more on the attendees’ main interest, how they will be affected by any changes in the release process. Some had last received data before the care.data debacle in February put a temporary halt on releases.
As a result of planned changes, will some current data customers find, that they have already received data for the last time, I wonder?
After the initial review of the critical findings in the Partridge report, the discussion centred on listening to suggestions what may be done in England to prevent future fails. But in fact, I think we should be going further. We should be looking at what we are doing in England to be the world-class player that the Prime Minister said he wants.[5]
We are focused on making the best of a bad job, when we could be looking at how to be brilliant.
To me, the meeting missed a fundamental point. Before they decide the finer points of release, they need to ensure there will be data to collect. There was not one mention of the public’s surprise that our data was collected and had been sold or shared with each of them until last spring. So now that the public in part knows about it, the recipients should also consider we are watching them closely.
Data users are being judged as one, by their group performance
What the data recipients may or may not be conscious of, is that they too each are helping to shape the orchestra and will determine the overall sound that is heard outside.
They may not realise that as data recipients, we citizens, the data providers, will see and hear their actions and respond to them all collectively, in terms of what impact it may have on our opt in/out decision.
I heard on Monday one or two shriller voices from global data intermediaries claiming that others had been receiving data whilst their own requests had been overlooked. As of last Friday, HSCIC said 627 requests were on standby, waiting for review and to know whether or not they would receive data. Currently HSCIC is getting 70 new requests a month. Bearing in mind the attendees were mostly data users, they can be forgiven that they were mostly concerned about data release and use, but they did in part also raise the importance of correct communication, governance and consent of extraction. They realise without future public trust, there is no future data store.
One consultancy however, seemed to want to blame all the other players for their own past mistakes, though there was no talk of any blame in any discussion otherwise. They asked, what about the approvals process for SUS (Secondary Uses Service data), how are those being audited and approved, is it like HES? How about HSCIC getting their act together on opt out, putting power back in the hands of patients, they asked. What about the National Cancer Registries, ONS (Office of National Statistics), all the data which is not HES, will there be one entrance point to access all these data stores for all requests? And as for insurance concerns by patients, the same said, people were foolish to be concerned. Why, “if they don’t get our health data then all the premiums will go up.”
My my, it did feel a little like a Diva having a tantrum at the rest of the performers for messing up her part. And she would darn well pull the rest of them into the pit with her if she was going to get cancelled. In true diva style, I’m sure that company didn’t even realise it.
But all those data recipients are in the same show now – if one of them screws up badly, the critics will slam them all. And with it, their providers of data, we patients, will not share our data. Consent and confidentiality are golden tickets and will not be given up lightly. If all the data-using players perform well, abide by the expected standards, and treat both critics, audience and each other with proper etiquette, then they will get their pay, and get to stay in the show. But it won’t be a one time deal. They will need to learn continuously, do whatever the show conductor asks, and listen and learn from the critics as they perform in future, not slacking off or getting complacent.
Whilst the meeting discussed past failings in the NHS IC, I hope the organisations will consider what has truly shocked the public is some of the uses to which data has been put. How the recipients used it. They need to examine their own practices as much as HSCICs.
The majority of the attendees were playing from the same score, asking future questions which I will address in detail in part two.
The vast majority asked, how will the data lab work? And other Research users asked many similar and related questions. [This from medConfidential [6] whilst on the similar environment for accredited safe havens, goes some way to explaining the principle of a health research remote data lab (HRRDL).]
Governance questions were raised. Penalties were an oft recurring theme and local patient representative group and charity representatives, asked how the new DAAG lay person appointments process would work and be transparent.
Other questions on past data use, were concerned with the volume of Back Office data uses. The volume of police tracing for example. How person tracing by the border agency, particularly with reference to HIV and migrant health, which may reveal data to border agencies which would not normally be shared by the patients’ doctors. “If people are going to have confidence in HSCIC, this was a matter of policy which needed looking at in detail. ” The HSCIC panel noted that they also understood there were serious concerns on the quantity of intra-government departments sharing, the HMRC, Home and Cabinet Offices getting mentions. “There was debate to be had”, he said.
They’re collectively recovering from unexpected and catastrophic criticism at the start of the year. It is still having a critical effect on many organisations because they don’t have access to the data exactly as they used to, with a backlog built up after a temporary stop on the flow which was restarted after a couple of months. HSCIC has reviewed themselves, in part, and any smart attendees on Monday will know how each of their organisations have fared. The audit has found some of their weaknesses and sought to address them. There is a huge number of changes, definitions and open considerations under discussion and not yet ready to introduce. They realise there is a great amount of work still to be done, to bring the theory into practice, test it out, edit and get to a point where they are truly ready for a new public performance.
But none of the truly dodgy sounding instruments have been kicked out yet. I would suggest there are simply organisations which are not themselves of the same standards of ethics and physical best practices which deserve to manage our data. They will bring down the whole, and need rejected – the commercial re-use licenses of commercial intermediaries. And the playing habits of the data intermediaries need some careful attention, drawing the line between their clinical support work and their purely commercial purposes. The pace may have slowed down, but data is still flowing out, and there was no recognition that this may be without data protection permission or best practice, if individuals aren’t aware of their data being used in this way. The panel conducted a well organised and orderly discussion, but there were by far more open questions, than answers ready to be given.
What we do now, sets the future stage of all data sharing, in the UK and beyond – to be brilliant, will take time to get right
How HSCIC puts into action and implements the safeguards, processes and their verbal plans to manage data in the short and medium term, will determine much for the future of data governance in England, and the wider world. Not only in terms of the storage and release of data – its technical capability and process governance, but in the approach to data extraction, fair processing, consent, communication and ongoing management.
This is all too important to rush, and I hope that the feedback and suggestions captured on the day will be incorporated into the production. To do so well, will need time and there is no point in some half-ready dress rehearsal when so much is yet to be done.
The next Big Thing – care.data
When it came to care.data, Andy Williams said it had been a serious failing to not recognise that patients view their GP records quite, totally differently, from the records held at a hospital. Sharing their HES data.
“And it is their data, at the end of the day,” he recognised.
So to conclude looking back, I believe where data sharing has reached, is leaps and bounds ahead of where it was six months ago. The Partridge Review and its recommendations recognises there are problems and makes 9 recommendations. There is lots more the workshop suggested for consideration. If HSCIC wants to achieve brilliance, it needs to practise before going out on a public stage again. The excellence of Chopin’s music does not happen by chance, or through passion alone. To achieve brilliance we cannot follow some romantic notion of ‘it will all be alright on the night’. Hard edged, technical experience knows world-class delivery demands more.
So rolling out care.data as a pathfinder model in autumn before so much good preparation can possibly be done, is in my opinion, utterly pointless. In fact, it would be damaging. It will be like pushing a grade 5 school boy who’s not ready into the limelight, and just wishing him luck, while you wait whistling in the wings. But what will those in charge say?
[9] Classic comedy Morecambe & Wise, with Andre Previn – all the right notes, but not necessarily in the right order https://www.youtube.com/watch?v=-zHBN45fbo8
[10] Blog post part two: care.data is like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two – future]
“That November farewell, given in aid of a Polish charity, came at the end of a difficult six-month British sojourn, which had included concerts in Manchester (one of the largest audiences he ever faced), Glasgow and Edinburgh, where the non-religious Chopin had unwillingly endured Bible readings by a pious patroness anxious to convert him to the Church of Scotland. Finally back in London, the composer-pianist spent three weeks preparing for what turned out to be his final recital by sitting wrapped in his coat in front of the fire at St James’s Place, attended by London’s leading homeopath and the Royal Physician, a specialist in tuberculosis. A week after the concert, he was on his way home to Parisian exile and death the following year.”
Born Zelazowa Wola, Poland of a French emigrant father and Polish mother, he left Poland aged 20, never to return. Well known and by some controversially for his long romantic liaison with novelist George Sand (Aurore Dudevant) after they separated his health failed and in 1848 he paid a long visit to Britain where he gave his last public performance at the Guildhall. He died in Paris.
How our data sharing performance will be judged, matters not just today, or in this electoral term but for posterity. The current work-in-progress is not a dress rehearsal for a care.data quick talent show, but the preparations for lifetime performance and at world standard.
How have we arrived where we are now, at a Grand Pause in the care.data performance? I looked at the past, reviewed through the Partridge Review meeting in [part one here] the first half of this post from attending the HSCIC ‘Driving Positive Change’ meeting on July 21st. (official minutes are online via HSCIC >> here.)
Looking forward, how do we want our data sharing to be? I believe we must not lose sight of classical values in the rush to be centre stage in the Brave New World of medical technology. [updated link August 3rd]* Our medical datasharing must be above and beyond the best model standards to be acceptable technically, legally and ethically, worldwide. Exercised with discipline, training and precision, care.data should be of the musical equivalent of Chopin.
Not only does HSCIC have a pivotal role to play in the symphony that the Government wishes research to play in the ‘health & wealth’ future of our economy, but they are currently alone on the world stage. Nowhere in the world has a comparable health data set over such length of time, as we do, and none has ever brought in all it’s primary care records into a central repository to merge and link, as is planned with care.data. Sir Kingsley Manning said in the current July/August Pharma Times article, data sharing now has to manage its reputation, just like Big Pharma.
Pharma Times – July/Aug 2014 http://www.pharmatimes.com/DigitalOnlineArea/digitaleditionlogin.aspx
Countries around the world, will be watching HSCIC, the companies and organisations involved in the management and in the use of our data. They will be assessing the involvement and reaction of England’s population, to HSCIC’s performance. This performance will help shape what is acceptable, works well and failings will be learned from, by other countries, who will want to do the same in future.
Can we rise to the Challenge to be a world leader in Data Sharing?
If the UK Government wants England to be the world leader in research, we need, not only to be exemplary in how we govern the holding, management and release of data, but also exemplary in our ethics model and expectations of each other in the data sharing process.
Regular readers here or on twitter, may notice the new-look.
I’m moving away from The Amateur Book Blogger banner, and will be posting simply as me, as I go on. The start of the summer holidays seemed as good a day as any, to saunter out into the sunshine on my own. [I may even see if it’s worth updating my resultant twitter handle @TheABB]. The reason? This week, the View From Here Magazine announced it will be closing on November 1st, 2014. After seven years on the writing team, it is not only the end of an era, but perhaps the start of a something new.
I started on the comms side, announcing writing events and industry news, and later moved into interviews. It’s been an amazing experience. Editor Mike French was a great remote-mentor. We’ve met only once, at the launch of his latest novel, Convergence, in The Dandelion Trilogy. Mike both enabled and encouraged me to interview some great writers, editors, scouts and publishers, every quarter. I learned something new each time, from every contribution, and had great fun. All of which I enjoyed, but some stand out in the memory more than others, and every one was unique.
Thank you to all whom I have interviewed since 2006, but also to readers and fellow unpublished writers who supported me, the team, and made the community at The View From Here what it is. With eclectic tastes, I learned much on writing, but also enjoyed the art of the creative collective.
The most recent interview I did for them, was here, with Isabel Allende. In her wide ranging career, it was hard to know what to ask and how to narrow it down, but one thing stays with me, in all she said, on the role of a writer:
“Writers have no obligation to comply with the official story or the official version, their only obligation is with their own consciousness. Honesty above all.”
The other part of my writing recently has been more akin to her engagement in politics and civil society. I’ve been on twitter really only for the last nine months, throughout the difficult pregnancy of care.data, pronounced care [dot] data. If you missed it, that’s the government proposed scheme to suck up our GP medical records, merge them with data already held at the central Health and Information Centre from our hospital care, and then use the new, richer record for commissioning purposes and potentially more, as yet undefined. Since our hospital and other health sourced-data is already sold to private companies and will continue to be so in future, but without having asked for informed consent, I’ve been a very skeptical critic and lay voice for positive changes for these wide secondary uses. [In case you’ve landed here for the first time, I’ve a background in tech database implementations, communications and change, and I took it upon myself to fully understand and follow the subject, a year ago when I came across the topic online, by accident.]
It looks now, as though some improvements on past failings will happen, but much remains undefined in detail, and as we all know, that’s where the devil likes to sup. I look forward to seeing some of the recently discussed changes and definitions in the Care Act, for example, becoming concrete.
So, that’s the reason for the insignificant changes on my part, and should I explain the image? I’ve chosen my favourite coffee mug for my header photo, with my favourite scarf. I use both often. The latter, reminds me a little of Bridget Riley’s op art. As a retro fan that appeals to me. The former, depicts the cover of Susan Stebbing’s most popular work Thinking to some purpose (1939) which was described on the cover of the first Pelican Books edition as being:
“A manual of first-aid to clear thinking, showing how to detect illogicalities in other people’s mental processes and how to avoid them in our own”
The work arose out of a synopsis she wrote for a series of radio broadcasts intended for the BBC. Published on the eve of the Second World War, Stebbing wrote:
“There is an urgent need to-day for the citizens of a democracy to think well. It is not enough to have freedom of the Press and parliamentary institutions. Our difficulties are due partly to our own stupidity, partly to the exploitation of that stupidity, and partly to our own prejudices and personal desires.”
Her words seem very timely.
To borrow from Wikipedia here: “This metaphor seems to me to be appropriate, because potted thinking is easily accepted, is concentrated in form, and has lost the vitamins essential to mental nourishment. You will notice that I have continued the metaphor by using the word ‘vitamins.’ Do not accept the metaphor too hastily: it must be expanded.”
“Potted meat is sometimes a convenient form of food; it may be tasty, it contains some nourishment. But its nutritive value is not equivalent to that of the fresh meat from which it was potted. Also, it must have originally been made from fresh meat, and must not be allowed to grow stale. Similarly a potted belief is convenient; it can be stated briefly, sometimes also in a snappy manner likely to attract attention. A potted belief should be the outcome of a belief that is not potted. It should not be held on to when circumstances have changed and new factors have come to light. We should not allow our habits of thought to close our minds, nor rely upon catch-words to save ourselves from the labour of thinking. Vitamins are essential for the natural growth of our bodies; the critical questioning at times of our potted beliefs is necessary for the development of our capacity to think to some purpose.”
So here’s to that, my ‘critical questioning’ may have shifted from one arena into another, but I hope I continue ‘thinking to some purpose’.
I looked in two previous posts at the background theory [1] to commercial uses of our data, then, the background to my concerns of commercial use with data intermediaries. [2] This is now part three, my glimpse into commercial use in real-world practice. It’s become rather a saga.
Here’s the short version: “In general commercial uses of data, I am increasingly learning that if you don’t pay for the product, you are the product. We need to shout a bit louder, that we are not a product for sale. It’s not only that there is an increased risk in a move of our health records from binder to byte and broadening access to them. We take issue with the change of approved purposes from care, to commercial use.”
At the Health Select Committee on July 1st, [3] I believe Sir Manning misses the key issue the public has with care.data and health record sharing, when he gave a response to Q562 to David Tredinnick MP:
‘We made big mistakes over the last 10 years’
“I am saddened by some of the comments that have been made this afternoon about the lack of trust and also by the impugning of our motivation. […]
We made big mistakes over the last 10 years, and we have a once-in-a-generation chance to get it right. I am absolutely clear that we have to engage the public in an open debate about the balance of risks and benefits. There will always be risks with data. There were risks with the Lloyd George envelope; notes were lost, they flew and went all over the place. There will always be risks, but those risks and the benefits are both enhanced by the technology.”
Whilst I applaud Sir Manning’s apology, and his call for open debate, I think he misses here the fundamental point of disagreement the public has with the HSCIC current practice. Selling our health data.
It’s not only that there is an increased risk in a move from binder to byte and broadening their access.We take issue with the change of approved purposes from care, to commercial use.
And these commercial (ab)uses in current form must stop if we are to trust the governance system in future.
Health Records for Commercial sale
HSCIC currently sells our health records for commercial purposes, to intermediaries with commercial re-use licenses, and had no consent nor our permission for this in the past, it continues to do so in the present and appears to have no concern or intention to stop doing so, for the future.
Mr. Kelsey added at the HS Committee,
“We have a very big job to do, and I hope that you will hold us to account in delivering it.”
To which I can only reply, it is you who say it. But who is accountable? The Open Debate which Sir Manning calls for has not been taken up by NHS England. We are told this is a programme of national importance, one which Mr. Kelsey has repeatedly said, including to the Health Select Committee previously, on which the entire future of the NHS depends. Why then, no national discussion, no news since the pause and a focus on updated communications of the current plan. The current plan with flaws in consent collection, scope determination, confusion of purposes.
There are so many ways this could be improved and gotten right, but not by November and without public debate.
How can you insist a programme so vital for the entire future of the NHS yet encourage no public discussion? This seems to be a theme in NHS England recent programmes. [4] The decision to outsource the GP support services was taken in private sessions, not available to the public like the rest of the Board Meetings [5]. Other programmes, pilot and actual plans for implementation go on without public discussion.
There’s been no apology for the data sharing policy developed since 2010 which has encouraged commercial trading and enabled this erosion of security, confidentiality and trust in the data management system of our nation’s health records. No one at the Department of Health has said, we got this policy wrong. No one at NHS England, the same people if under a different label. Poor Sir Manning at the Information Centre who carried out their policy, has been left to say there were ‘big mistakes’ made. But not by him since July 2013.
Trust and care.data off course
That our trust now lies in tatters, is not the fault of the Health Select Committee member to whom Sir Manning says, he is saddened and disappointed. It’s not Joe Public’s fault who had no idea this was going on, until six months ago. Where did these policies and plans since 2010 come from? Where did the use of our data go so astray and why is flagship care.data now so terribly off course? Mr. Cameron outlined it in 2011. What happened in the three years?
Health records for sale
As I wrote in a previous post,
“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, this re-use of data is now becoming normalised.”
But should it be normal that our medical records are for sale?
When celebrity Michael Schumacher’s notes are for sale, [6] being offered concretely to the media, we all see that is wrong. Just imagine 70 million copies of Schumi’s record, each with our own name on it, being offered to anyone outside of those who need it for our care. Offered to these commercial for-profit data intermediaries. It’s not a theory – this is what is happening to our records, today. Don’t accept the ‘anonymised’ statements, they’re simply not true. Identifiable data and pseudonymous data has been sold. The register confirms it, and that was only a 10% sample.
“To earn the public’s trust in future, we must be able to show that our controls are meticulous, fool-proof and solid as a rock.”
I think banning data sharing for commercial use and re-use would be a good start.
What is it to be used for and why?
When we think of our health records being used by others, we need to separate the uses of the data, in order to understand different ways it is used, who uses it and why. Data once it is processed becomes knowledge which is used as Business Intelligence. It is common in discussion to conflate use in care with care.data. It’s even in the name. But the uses of care.data are secondary. Not to be used by clinicians caring for us, not replacing hospital notes to give to consultants when we are referred for a hospital stay. Not providing discharge papers. It’s only approved for commissioning and sketchily [imo] approved for risk stratification. [ref p.5 ] [8]
care.data extracted from GP surgeries, is not even approved for research purposes, but to read all the recent debates you’d think research depended on it. Research using GP extracted patient data, is not an approved use of care [dot] data. Research using GP extracted patient data is not an approved use of care [dot] data. Repeat, ad nauseaum.
What is already being done, and what is used legitimately i research such as public health (albeit without our past knowledge or consent), is with our hospital data, HES, SUS, Mental Health data, usually with CAG review, and through 251 approval sometimes through DAAG review at HSCIC – it is available and is on sale to all sorts of other non-care providers. And that is planned to continue.
The records extracted so far, when not used for research appear in recent years increasingly used for comparison, the concept of ‘ranking and spanking’ professionals and providers of healthcare. They are also used in commissioning, payment validation and understanding costs and spending. But beyond that, there are all sorts of others who still come under the umbrella of ‘health purposes’ but don’t directly benefit the NHS or individual patients. What is their demand and what are they being supplied?
In the newly created NHS marketplace, customers at individual level are patients, or at a market level they could be any part of the healthcare buying structure, a GP practice, a Clinical Commissioning Group, a Hospital Trust.
The challenge of any demand and supply chain process, is that you need a market willing to pay at the price you are prepared to sell. And you need to offer what they want to buy. For that, the buyers must see a value in the data they want to obtain. Where is the value for these areas of use: Generic NHS Business Intelligence, Generic Commercial Intelligence and Pharmaceutical intelligence?
Health records as Business Intelligence
Some companies take data and process it before selling it to NHS and other health providers in England. This provides a third party service and skill set which the HSCIC nor the NHS Trust for example, has themselves, such as IMS Health.
So business intelligence used for the benefit of the NHS, makes sense and is necessary to a greater or lesser degree depending on your attitudes to comparison websites, green/red flagging professionals and commissioning. Benchmarking was provided by Tribal until that part of their business was bought out by Capita.
These companies’ experience and market is healthcare. The kind of knowledge they can give to the NHS is highlighted in their case studies.
So for clinical care, and for commissioning at individual organisations, these tools are clearly useful and use individual patient level data. [9]
Al sorts of other places and individuals perform these services. They include a wide range of commercial organisations, small and large.
Health records as Commercial Marketing Intelligence
Commercial buyers however, can include wanting data for identity verification, fraud prevention and background checks. Services such as Experian offer. These may be what the loose definition in the Care Act would say are now banned, but are they? What is to say that a company which offers the use of private health services, healthy eating or pharmaceutical marketing is not providing information to others, for the promotion of health?
“Experian employs more than 12,500 people in 34 countries worldwide, supporting clients in more than 60 countries. Annual sales are $3.1 billion (£1.7bn/ v2.5bn).”
Identity verification can be done, matching data across a biographic footprint, ” in databases, established for 45 million UK citizens and hold in excess of 1 billion records.”
“Experian public sector currently works with 380 plus local authorities, 52 police and investigatory bodies, as well as central government agencies including DVLA, HMRC, DWP and the Cabinet Office.” [10]
There is clearly a lot of data sharing in the public sector, about which we may understand very little. But mostly the buyers of data want to sell something. Companies buy lists of people to use in marketing campaigns, who might be interested in what they’re selling — and companies also want to learn more about their current customers.
This is where I find the level of detail and what is done with our data, more than a little freaky.
Every UK consumer is classified into one of 22 types, aggregated into six groups. The 22 types are linked to six decision-making styles, providing insight into consumers’ motivations when using different media and the processes they go through in deciding about products and services.
I don’t know what segment I am in. But I know that I will have data stored in many of those different data sources they mention. So do they actually know more about my habits and inclination, that I have self-awareness? If their tool has over 850 million input sources which they process, it’s more than likely. 34 million email addresses, 20 million mobile phone numbers, 49.7m names and addresses.
Experian may well have much of this data from the electoral roll (unless like me, you opted out of these uses) but in the HSCIC January-April 2014 register of releases [7] data was given to Experian for use in Mosaic. (see July – 132kb right of page)
“Mosaic is Experian’s powerful cross-channel consumer classification designed to help you understand the demographics, lifestyles, preferences and behaviours of the UK adult population in extraordinary detail.” [12]
That they understand and track my behaviours probably better than I do, and at such detailed level, I find surprising and invasive. In fact, I find it threatening in a similar vein to the visceral reaction that the Facebook experiment generated this week online.
As SF Gate reported,
“Using unsuspecting members as human guinea pigs is repugnant. And when the biggest social network on the planet does it, can its leaders be trusted with their own technology?”
This idea that just because one can and the technology permits it, does not mean that one should. It just feels wrong to find out others may manipulate our thinking and behaviours in such a targeted way. Just as Experian does with consumer data:
“Within rural areas we are able to pick out the individual households that are likely to be commuting to towns and cities nearby…”[12]
Individual households? Understanding my behaviours, gives them information which they use to nudge or influence my decision making. Understanding our behaviour ‘in extraordinary detail’ helps companies market and sell more to customers.
There are other re-uses even for health purposes, which seem less transparent and more about us as general consumers, rather than for our health. For example, the use of HES data is in social marketing targeting:
“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 and Harvey Walsh.”
These companies have re-use licenses for data. what that means is better explained here by medconfidential. [14]
How will HSCIC know how data will be used after release and how will it be audited and how often? When it comes to human tissue, the HTA only audits tissue banks in the UK once every three years. That’s a long time in between audits if something has gone horribly wrong in best practice.
Health records as Commercial Pharmaceutical Intelligence
To global pharma it is again not the data itself which is of value, but in the knowledge it reveals. The pharma business intelligence. It can show at an individual level what is being prescribed or show any gaps it reveals, which will allow pharma, to address ‘unmet clinical need.’ The data already compares hospital prescribing and reports make recommendations used by NICE on what drugs to use and recommend. My concern is that to treat the worried well who have cash to spend, will deflect attention from the needs of the sick and poor and that even if only at postcode level, we will be targeted for pharmaceutical marketing.
“The parties will initially look at how anonymised, integrated health data can be used to identify unmet clinical need in patients with diabetes. In the UK, diabetes affects approximately 2.9 million adults overall, with more than 90% of these patients having type 2 diabetes. This makes diabetes one of the most common chronic medical conditions and represents a significant strain on U.K. health services.”
Astra has another Memorandum with IMS Health. So we, whose data it is, have zero transparency and can request no accountability for the use of our data once it has left the HSCIC.
And it matters because when there are data breaches in these companies, we should know whether our data has been involved.
In January 2012 AstraZeneca signed a three year partnership with IMS MOU[16] and stated it builds on AstraZeneca’s existing ‘real-world’ data and research partnership with HealthCore in the US, the health outcomes research subsidiary of WellPoint. Wellpoint which had a massive breach a year ago, July 2013. So how do we know where our data was stored, and if it were involved or not? Here is what pharma use data for, to analyse “unmet clinical need.”
“The partnership with IMS Health will give AstraZeneca access to pre-existing anonymised electronic health records, which include clinical outcome, economic and treatment pattern data. In addition, the companies will jointly develop a customised research and data analysis platform. The information will provide a deeper insight into how medicines that are already on the market are working in real-world settings across Europe, painting a picture of unmet needs …”
We can look at this more than one way. Some feel strongly commercial use should exclude Big Pharma. On the one hand, the State and Government does not own manufacturing of drugs nor medical products. Though we used to do both. Recently, that we did own, has been increasingly sold to commercial buyers or venture capitalists.
The State and pharma work together, often through University research, to create future health solutions, drugs and the drive towards personalised medicine and diagnostic tests. When companies which own our data are sold and bought internationally what happens to our data they own? Boots Alliance bought data from HSCIC, and they are about to be bought by US Walgreens. So many questions.
Those more informed than me will know all about the challenges of pharmaceutical companies, the patent cliff, mergers and diversification. IP, diagnostic tests and generics in the market. Big Pharma and the State are working together in much research to find solutions and discoveries to current and future medical issues.
How far does cooperation stretch and when does it become inappropriate? Is commercial interest supportive of State practice or driving decision making policy? Should commercial companies fund any costs at our NGOs? And do those which buy the most data, get a bigger slice of the influence of what conclusions reports using the data, reach? Whilst there is a public move to #Alltrials I believe we should demand #Allreports in the public interest as well. I would like to have transparency at HSCIC how their reports are funded, when working with partners which are frequently commercial pharma partnerships.
Mr. Hunt recently defended to the Health Select Committee the reasons why a commercially supported pharma lobbying group was used to advise on the NHS Commissioning plan – the Specialised Healthcare Alliance. Supported by 14 pharma companies, these corporate members are contributing £12,000 each towards the costs of the Alliance for 2014.
Are we really seeing transparency on who is driving change in our health service?
The Richness of our records open for Exploitation
The value of Big Data is only extracted by exploiting its richness. And these days, with mobile phones, social media and shopping habits tracked by the minute, the average citizen like me, it seems can’t easily avoid being part of it, whether we want to be or not.
But if we don’t even have the right to control and own our data and we can’t control the knowledge generated from it, how can we control who knows what about us and what they use it for? If we’re unaware of its existence, how can we understand its impact on our life to make free and uninfluenced choices in what we buy, for example? Or understand how we may be segmented and discriminated against. And this is aside from the assumption that the data held is accurate and that as a result, no mistaken judgements are being made about us.
As for our health data, how can we control its use by these massive data managers if we don’t even know who they are at the end of a chain of re-use licenses?
Put Business Intell, Commercial Intell and Pharma together
The vast amounts of data already held and analysed to the nth degree by these data intermediaries, means that making even more data available to them is going to increase the segmentation and risk of identification. They already have data on individuals and is it not enough that they make analysis at household level as shown by Mosaic? Individual health level data seems that they could put a final piece in the puzzle and know exactly who in which house had which ailments, their lifestyle risk factors could be refined and these data brokers would be able to look inside our very bodies.
One which fits data together, we do know from the HSCIC data release register, and press reports in March, is Harvey Walsh. The company tracks individuals pathway data, over time and the website now says:
“Harvey Walsh use non-sensitive and non-identifiable HES data for patient pathway mapping that is used by the healthcare industry with the NHS to improve the quality of healthcare management and service delivery by better understanding how patient cohorts move around the healthcare system.”
[Harvey Walsh’s system] “AXON holds non identifiable and non-sensitive HES (Hospital Episode Statistics) data and other sources of data including GP Practice Prescribing, QOF, Demographic and NHS personnel data sets.”
Data snapshots combine to give a Picture over a Lifetime
So now, not only can these companies understand us in infinite detail, but can do so over our lifetime. We are tracked over time and anaylsed not as a snapshot, but as a living album of snaps, moving across time. They know what we do commercially, in our lifestyle and how it interacts with our health and what may affect our consumer habits and help nudge our decision making. Put them together, and it starts to feel like I’m on The Truman Show.
I’d like to know though, once the data is processed, what happens to the new combined knowledge set, it creates? The original raw data as extracted may not be given to others, but is it the same product and protected, if it now shows up as a small piece, in a bigger jigsaw?
Omega Solver took their product offline this year, after privacy campaigners identified the risk of identifying individuals.
Acxiom as a world data leader example, is a company which provides consumer data and analytics for marketing campaigns and fraud detection. Its databases contain information about 700 million consumers worldwide.
“For more than 40 years, Acxiom has been a leader in harnessing the powerful potential of data.”
It seems others share my concerns, as this article on how data brokers use of our data is creepy, from Julia Angwen showed up in my alert feed this week, and another in ProPublica from last September. As she says,
You can see more on this, in her interview with PBS News:
Our lifetime data is attractive to commercial marketing and all sorts of organisations who wish to understand us and sell to us. The one purpose, possibly the least trusted I have not really touched on. Hospital records have been shared with insurers and used for refining policy. Records have been sold to re-insurers, even since January 2014. And these insurers mine and use data much more deeply than we want to imagine. In fact, as I finish this I see the FT front page tomorrow carries a current story how insurers trawl our Big Data.
FT Insurers trawl Big Data
HSCIC Data Sharing Agreements will prevent Data Merger?
IMS Health UK & Ireland’s general manager, Michael Sanvoisin shows that exploiting the different data sets ‘out there’ in Big Data, is kind of the whole point. [17]
“The smartest use of data will be the effective combination of all the various sources of open data and patient information services available in the marketplace, augmented by companies’ own internal information and data from other reliable and reputable sources.”
IMS Health is working in partnership with the MHRA – and in particular the clinical practice research datalink (CPRD) – to help the UK increase its capabilities to build cohorts of patients for clinical trials. This has led to the linkage of IMS Health’s Hospital Treatment Insights (HTI), the aggregation of HES and prescribing data, to the CPRD. This powerful linked dataset enables the identification of specific patient cohorts and allows companies to monitor patient flow between primary and secondary care. IMS Ardentia’s Costed Care Pathways (CCP) sequences clinical events together with detailed financial information to give a longitudinal view of a particular patient care pathway.” [17]
When these global companies have in addition, bought data from HSCIC, where is the transparency for patients to know what internal practice at these private companies prevents all data becoming one Big Data set, in identifiable or pseudonymous formats, and sold or shared onwards with others?
The Recent register states explicitly, that IMS will not do this, that the data will not be sold onwardly, but how about theknowledge they create from it?
“ANDromeda is an engagement tool enabling greater market access with a tailored need across all functions within pharmaceutical companies.
And in the UK, are involved in work shaping our health market: “that may involve looking at how primary care organisations operate or focusing even closer on area-level commissioning, such as GP consortiums.”
Where is our Data being Used?
“The effective combination of IMS Health’s proprietary data assets, in addition to the vast swathes of open data being made available, can help inform key strategic decisions for both the NHS and pharma. Moreover, it can drive an increase in joint working towards shared benefits and therefore transform healthcare services in the UK and beyond.”
“in the UK and beyond.” So I ask myself, which countries outside the UK have received our medical records? Remembering that non-US citizens have no privacy rights in the US, if it landed there, we can say good bye to ever getting control of that knowledge back again.
Indeed HES extracts have been given to places in the US, specifically the University of California, the FOI request I got back confirmed. The Partridge Report contained two examples of data which has gone to Kyoto University. Yes, Japan. And remember, if the data is completely aggregated and anonymised it’s not included in these registers, because it is open, green data. So what exactly went to California, Japan and who knows where else. No one knows 100%. The Report only sample tested 10% of all releases.
IMS received 251 access (which is required for confidential data without consent) for identifiable data extracted from hospital pharmacy systems, sent to HSCIC and linked with HES (hospital records). The main customer for these products will be the pharmaceutical industry. (Lines 101-2).
IMS Health is massive, as is the global health data they hold.
On the IMS One intelligent cloud, the company connects more than 10 petabytes of complex healthcare data on diseases, treatments, costs and outcomes to enable our clients to run their operations more efficiently.
Drawing on information from 100,000 suppliers, and on insights from more than 45+ billion healthcare transactions processed annually, IMS Health’s 9,500+ professionals drive results for over 5,000 healthcare clients globally. Customers include pharmaceutical, medical device and consumer health manufacturers and distributors, providers, payers, government agencies, policymakers, researchers and the financial community.
Another user of our data is Optum UK (formerly United Health Group, and if that sounds familiar it was Simon Stevens [18] last employer). I wonder for example, does that mean it is also used by Optum Insight in the US? This presentation by Christopher M. Blanchette, shows different data providers of ‘RWE’ real-world evidence and where their data is sourced.
If international companies have NHS England patient data and re-use licence, is it likely in to have been exported around the world or how can we know in which locations it is used? I want to know how often data is given directly to International companies? How often is data given to companies in the UK, who have foreign centres outside the UK, which would routinely share that data with their central systems and therefore export it? It is a basic right of data management to require fair processing for identifiable data, to know who has it for what purpose.
How do we protect consumers’ concerns?
And as US Commissioner Julie Brill’s report shows, in the States there are concerns how this data is used and they are acting on it. Are we doing the same here?
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, the data controller, the Health and Information Centre, does not know. And he can’t ask for what data is held in pseudonymous format – even though the data is pseudonymous with a key to make it linkable with new identifiable data coming in, so to me, that makes little sense. It is by its nature, re-identifiable.
But if HSCIC won’t release it in a Subject Access Request (SAR), we can then only surmise, whether our individual data was contained in bulk data transfers. So from the released data register, we should look at what types of companies are using pseudonymous (so called ‘amber’ data), and assume our own data was indeed included.
Overseas Data Distribution and Protection
care.data, it was said at the Health Select Committee meeting by Mr.Kelsey in March, was only for use in the UK but the HES/SUS data application form includes a field for use overseas. So, does that mean policy for export has changed for all data, or should they have spoken more precisely meaning only that “GP data extracted in care.data” was only to be used in the UK?
Because IMS, again, already has access to primary data from CPRD and secondary care data according to line 10 from HES. And whilst, it states “[Note added 28/3: The data are onwardly released only in aggregate form] I am curious – where does ‘onward’ mean? There is no Ltd. on the company name, no territory or geography indicated in the register. So if data is released to an American firm, should we assume it sits on US servers and is accessed directly by their US staff? Does onward only restrict them from giving the raw, identifiable data they received, to others outside IMS? Is it availble in non-aggregate form inside the whole of the IMS system? I, in the general public, can’t tell from the register and IMS is hardly going to tell me. We should be able to find out. I’ve found it a challenge, and my FOI request to HSCIC [14] to find out what data may have been given to US or Asian organisations, was tougher than my entire lifetime of dental appointments combined. It shouldn’t be difficult. Patients should be able to easily ask, to whom did you give my health data and where, for what?
Do we know enough about the plans to use and commercially re-use our data for commercial ‘health purposes’ as being broadly defined in the Care Act? If not, patients should be asking. GPs don’t have time.
Why does it matter? Because legal jurisdiction of data is still (perhaps outdatedly) physically geographic at least in aspects with which I am familiar. When working on global implementations of confidential employment data, we had to gain legal advice from each territory submitting data, on how we should legally properly manage data from over 50 countries in the world and its access by regional and global teams in the US, Europe or Asia. And on simple terms, we should always handle, process and use data in a way the individual expects and feels common-sensed appropriate to the purpose for which it was submitted. British citizens are not protected by US privacy laws because they apply only to US citizens.
“Existing laws do not sufficiently address data brokers’ handling of sensitive data in marketing or risk mitigation contexts,”
says Julie Brill’s statement. Well they don’t protect us Brits, at all, so I want to know if it’s being used abroad.
Few in England, will expect their data to have been made as freely available at identifiable individual pathway level, as it appears to have been in recent years. Do I at least have the chance to protect my children’s future data privacy, if not my own now?
Surely we can trust Data Protection Laws?
Because of the legal status of data which is deemed “de-identified” or “anonymized”, it is claimed they don’t violate our rights to health information privacy – Data Protection law accords us only the right to fair processing, not to prevent its processing, due to the the Health and Social Care Act 2012 which requires its extraction — but if it’s possible to re-identify longitudinal data sets – and if the whole point of getting these data sets together is to combine them, surely common sense would say, it may be legal, but that doesn’t make it right. There are other DPA expectations which HSCIC also fails to meet. The Minimum data required, for example. Deletion. Accuracy. I am guessing that every single one of the eight Principles have been broken by our data extracted before the HSC Act 2012. Yet, everyone seems to be ignoring this.
When it comes to Data Protection, identifiable data is treated differently from anonymous data. Amber individual level ‘pseudonymous’ data, is not the same as aggregated anonymous statistics and the care.data privacy impact assessment [19] confirms the risk of re-identification, yet the data is being treated as if it is anonymous. I can’t believe people working in the field believe themselves these data groups should be looked on as being equal. In my opinion, it’s not so much a case of wearing rose-tinted spectacles, it’s more like a blindfold on the wise monkeys; hear no evil, see no evil. [20]
I can quite clearly state on behalf of many, we feel that our rights to privacy have been and continue to be violated, no matter what the letter of the law says.
Whilst HSCIC may see only its own data sharing practices in a silo, that’s not how the impact of its sharing works in real life. It’s a join the dots between different data sets from different sources.
Can Good Governance Give us Confidence?
We are told that data-sharing agreements make it illegal for the data to be combined with other data held by the recipient, to make it identifying. But if the Data Controller doesn’t know what data the company already has, and doesn’t even keep track of what data has been given to them already, it must be impossible for individuals within these massive corporations to know the impact of adding their piece of the jigsaw puzzle. Over time, they will not track either, what from their company has already gone into creating the Big Data picture.
We could only rely on release controls and good governance, but for the past ten years reported in HSJ and the Partridge Review, it appears some datasets have been inappropriately shared without audit, which would have spotted the mistake. Governance is simply inadequate. In my opinion, not with malicious intent. Rather, simply, the data sharing strategy has been too fast for its own good practices to keep up. Now, it has to catch up fast.
As awareness increases, so too is the push back on the privacy grab. How do we feel about losing our individual rights, the removal of confidentiality and consent, the right to freedom from cold-calling, and to know who has our data for what reasons. And do we feel the same if we lose those rights in the name of commercial or public interests?
The British public is pushing back on banking failures and resents increasingly to see the minority of individuals benefiting commercially at the expense of the many. We resent the paternal state definition of the ‘Public Good’.
The public interest considered by CAG in reviews of data release applications, must consider protecting both the public interest in research access to confidential patient data and the public interest in a confidential health service. Add to that the public interest of providing a national health service, and its safe to say ‘the public interest’ will be hard to satisfy for all of the people, all of the time and will be subjective.
“that the purpose for which the data will be used should be in the public interest and for the provision of health and care services; [and] that any approved processing must respect and promote the privacy of patients and care service users… ” (Hansard, 10 March 2014, Col.137)
Perhaps even more subjective, is the atmosphere of public interestand how interested the public is, in how how level decisions affect us on the ground. Certainly, Snowden and other data sharing revelations have coloured the muddy backdrop of how our data is gathered and used by others, and increased calls for transparency.
The Department of Health will be furious with the Home Office I expect this weekend, as they triggered a massive outcry over the perceived lack of transparency and scrutiny afforded to MPs and civil society over the Data Retention and Investigatory Powers Bill. Even Radio 2 gave it 20 minutes coverage. [22] (From 01:36.40) This kind of governmental out-of-touchness with the public and the perceived desire to hide something in the rush to the new legislation, is what undermines trust in all areas of the public-state relationship.
It implies a paternal notion, of “we know best, so just trust us little children.” Well, that ain’t gonna fly. Seahaven is not “the way the world should be.”
Patient empowerment to own our Health Records
This flawed process, within and beyond NHS data sharing, has also created a sense of loss and disempowerment. Whilst presentations are all about ‘patient centred’ care, and ‘personalised medicine’ sounds so about the individual patient, it seems safe to say patients have been left out of the digital decision making and sharing how those decisions will affect the public on the ground. This for care.data, should have been central to plans to ensure support and success. There are still unfilled positions supposed to be filled by patient organisations or patients on the tech board.
It seems endemic to new programmes too. Or have patient organisations been widely involved in the genomic plans for the nation and not told us? Unlikely.
The talk thus far, does not match the walk. Knowledgable patient involvement is as desired by some of those leading parts of NHS patient engagement, as a chocolate teapot is useful. One is documented having said on another programme, “this was not a suitable point for patient involvement.” Either you want patients involved or not. Involved means from the beginning. Not as the decoration at the end, a way to tick the engagement box.
The notional idea of patient empowerment in this programme is tokenism, if the most basic principle of care, the only thing I can control in my consultation – my patient confidentiality – is treated with such little respect.
Is the public good really defined and does it outweigh the private good and our long established rights of consent and confidentiality? Does it vary depending on circumstance and if so, who decides?
It certainly doesn’t seem to be us, the patients in healthcare. Nor as citizens in any other field of our personal data.
If you don’t pay for the product, you are the product
In general commercial uses of data, I am increasingly learning that if you don’t pay for the product, you are the product. Maybe we need to shout a bit louder, that we are not a product. We do not all want the knowledge of our health & lifestyle to be for sale.
We’ve got used to these third party uses through the recent media revelations and the acceptance that current Government seems to be prepared to sell anything the State has in its possession. I wonder how representative that is of what the people would choose to do?
So at the risk of repetition, let’s not forget the basics:
The list of past customers in the Partridge Review of those who received data before April 2013 shows the extent of what was hidden from us for twenty years.
Should we be asking, what may be hidden still?
By stretching the scope of the potential discussion around the ‘industrialisaton’ and use of our health records for secondary purposes, we must not normalise the basics which we at first, found so surprising. We need to get them fixed first. Then, only then, will patients be willing to look at broader future scope. If I can’t trust you to manage my hospital record when I broke an ankle, why would I want to trust you with my genomes in future? It reveals a complete disconnect at NHS England level with the public in care.data thinking.
Come back to reality and listen to patients’ real concerns. We don’t want our data given to third parties, these data brokers and intermediaries or to continue re-use licenses. Even if it’s for ‘the promotion of health’ the purposes in the Care Bill.
And honestly? NHS England and the Department of Health shouldn’t want that acceptable in policy either, because they need to know who has our data, to govern it to make sure it is acceptable. As Sir Nick says in his report, the future data governance must be:
“meticulous, fool-proof and solid as a rock”
One more big mistake in who received our data in the future, and all cards will be off the table. For this to work, you need to properly manage it. And all this at the time where NHS England has now decided to outsource population wide databases, through the Steria outsourcing. Ha. Get that outsourcing security wrong, and for all your future programmes, as Truman would say, “Good morning, and in case I don’t see ya: Good afternoon, good evening, and good night!”
In the words of more Americans for whom I have a respect & love of their self-determined own words, Simon and Garfunkel, ‘Slow down, you move too fast.’
Julie Brill’s Statement made a recommendation in the US:
“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.”
We should feel that we consent to this mining of our health, wealth and lifestyles and know what is done with that knowledge. I feel disempowered because in finding out how my health data is used, I’ve discovered a brave new world of how my personal data is used. By commercial business. By Government. By suits and wonks as may be nicknamed. I am not equipped or informed enough to understand it all, but I’m doing my best to find out.
We need to trust in the people who manage these systems, who drive the policy and who advise the two, to work together and make technology work well for the rest of us. It should work well with privacy and security, and functionally.
Patients must speak up and Ask Questions
Patients must start asking more questions about these commercial uses and re-use licenses, because whilst the commercial intermediaries may access data for the purposes permitted in the Care Act, we are not a partner in patient engagement. Our data is being mined in the name of NHS improvement. Our samples being gathered in the name of science.
We are the product for sale. Our name, and everything else about us.
[3] Health Select Committee July 1st, 2014: http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/handling-of-nhs-patient-data/oral/11192.html
[9] IMS Health Ardentia http://www.imshealth.com/deployedfiles/imshealth/Global/Content/Technology/Technology%20Platforms/Ardentia/Ardentia_Royal_Free_PLICS.pdf
[10] Experian Public Sector http://www.experian.co.uk/assets/identity-and-fraud/authenticate-for-public-sector.pdf
[17] IMS Health using NHS patient data http://www.imshealth.com/deployedfiles/ims/Global/Content/Solutions/Healthcare%20Analytics%20and%20Services/Healthcare%20Outcomes/IMS_HTI.pdf
The Partridge Review came out on Tuesday 17th and everyone should read it. But not just the summary. Both the full version and [1] summary are here.
So what is positive about these massive revelations? At long last it appears that the hands have come off the ears and the real issues are being listened to.
My summary: “NHS England cannot now put a hand over its eyes & hope care.data issues are only about communications.”
I feel somewhat relieved that the issues many have been concerned about for the last ten months, have now been officially recognised.
Amongst them, it has confirmed the utter lack of clear, publicly transparent and some quite basic, governance procedures.
It’s no surprise then, that our medical records, on at least two occasions in this sample 10% review of the releases, have gone to undocumented destinations. (Let’s ignore the fact of the other 90%!? of which we have no visibility yet).
At least eight insurers or re-insurers were in this 10% sample, so how many times did such companies get it, in the other 90% which has not been reviewed and we haven’t heard about?
How will ‘promotion of health’ purposes exclude them in future? In my opinion, it won’t.
Why would an insurance company be excluded if it requests data in order to provide health care coverage?
This is the wording of the Act, not ‘for the benefits of the NHS’ or any other more ‘friendly’ patient facing framing.
At the NHS Open Day on Tuesday, the same day as the release, a panel spokesperson stated that commercial information intermediaries [2] will continue to be approved recipients. Gah – why this is such a bad idea, I wrote about here. [3]
The Partridge review said there had been no complaints. [4] MedConfidential pointed out an example of those of which they know. Kingsley Manning told the Health Select Committee [5] on 8th April, there had been seventeen opt outs of Hospital Episode Statistics, ever. Fourteen in 2013 and three prior to 2013.
“Q377Chair: There is not an opt-out rate for care.data yet, presumably.
Kingsley Manning: No, not on that, but in terms of the number of people who have acted to opt out, it is 3 opt-outs up until April 2013 and a further 14 opt outs since 1 April 2013.”
Would I be wrong to suspect each was accompanied by a complaint? You don’t usually opt out of something you are happy with.
The reason for these low numbers of both complaints and opt out in the wider public? WE DID NOT KNOW. The public didn’t know we had anything to be unhappy about. Many still do not.
As soon as I fully understood the commercial selling of my family’s patient records, this below is the query for advice / complaint I made in January to ICO, before the launch was postponed.
I wanted some guidance from an outside body, because I was being told the law permitted this extraction, so what good would a further complaint to HSCIC do? I had already written to my MP and had a response from the Secretary of State / Department of Health (which tried to tell me patient identifiable data was not shared with third parties), as well as feedback to my concerns raised by email with HSCIC, all of which only tried to reassure me. I had no one to otherwise raise concerns with. The ICO advisor I spoke to told me at that time, that they had had many similar complaints.
I’ll be blunt and say now, especially since the Open Day [more on that later, especially on the content of care.data FAQs we received], I think it’s fair to say I am far better informed about care.data than most in the public. When Mr. Kelsey asked for a show of hands, how many had heard of care.data, all put their hands up. Bearing in mind the rooms were full of highly involved people, NHS England staff, CCG and PPG leaders, and few ‘ordinary patients’ like me, and the agenda contained a section on care.data, it’s unsurprising we had heard of it. When Mr.Kelsey asked, “how many of you understand what it is?” the response was around 50%. I’d dispute also, that all of those 50% truly do.
Some of the comms material we were given is factually incorrect, for example, around research. Currently, GP held data planned for care.data extraction and its merger with HES, into Care Episode Statistics (CES), is approved for commissioning purposes but not for research by the GPES group. It’s not approved for research purposes, so its no good telling us how good it is to have it for the benefit of research. What has already been released for research, and continues to be so, is what was already extracted in the past, with or without consent, and informing patients.
Records will not be deleted which raises all sorts of historical reporting concerns if mistakes are identified in retrosepct.
I have spoken with several NHSE Communications people who genuinely asked me, or left me asking the question for them in my own mind, “If I don’t understand it, then how is the public expected to?”
The concerns I had now almost five months ago, seem vindicated by the report. The actions taken since, the loose wording of the Care Act 2014, and little evidence of intention to make any change which is binding i.e. the opt out is only granted at the whim of the Secretary of State, it’s not statutory and that there is no independent governance to be put in place , have done nothing to bolster my confidence these gaps have been filled.
Simon Denegri,Chair of INVOLVE – the UK’s national advisory group on public involvement – and NIHR National Director for Public Participation and Engagement in Research, wrote a response on his blog [6]. I agree with the spirit of his post, and positivity, [he also writes excellent haiku] but where I disagree I outline below. There is room for positive hope for care.data, but first, let’s properly address the past.
“I am sure that many better informed people than I will pore over the detail. Others will use it to strengthen their case that we should put a stop to any manner of data sharing.”
Perhaps most key, I disagree with his fears the report could be used by ‘others.’ I don’t know anyone who wants to see a stop to ‘any manner’ of data sharing, including me. It’s the *how* and *why* and *with whom* that still needs work. Some of us may not want it without active consent, but that is part of the how, not if. It’s not *any* manner that I object to, it’s *this* manner specifically.
I have read the Review in detail and whilst there is much positive in attitude in the Review, the reality of what difference this will make with any real bite, is hard to find.
For example, “The HSCIC will plan a new ‘data laboratory’ service which will protect the public’s information by allowing access to it in a safe environment with HSCIC managed networks and facilities.” But this is with caveats, as it’s the “default,” Tim Kelsey said on Tuesday to the NHSE Open House. It does not mean *all* and if global third party intermediaries and business intelligence companies are still to receive data, then I can’t imagine the global likes of IMS Health, or Experian, or Harvey Walsh will send someone along to Leeds every time they want to extract data. Who will be given special permissions and how will they be decided and recorded, how will it be documented what data they access, if they get a free pass?
Unknown others have direct access to the HES system now through HDIS. Public Health should rightly use our health data, but a transparent list of all approved organisations here too, would be a positive step.
Simon’s post continues,
“As you would expect from a previous Chair of INVOLVE, Nick Partridge, has secured fundamental changes in the governance of HSCIC and data releases going forward. These include patients and the public sitting on the main committees reviewing data releases, open publication of data releases and a programme of ‘active communication’ with the public”.
Patients and public on the DAAG committee. If they are informed about data governance law and good practices, yes, if it’s just ‘representative’, not so useful. But DAAG is HSCIC staffed, and HSCIC has a legal and policy remit from the Department of Health and in its roadmap to distribute data, and will create ‘a vibrant market of data intermediaries’, as it would be wrong to exclude private companies simply on ideological grounds. So the concept of ‘independent’ is flawed. Where are the teeth needed to reject an application, if it’s in the interest of the reviewing body, to accept it?
“It’s my view that the Partridge review, its recommendations, and the swift response from the Health and Social Care Information Centre (HSCIC), offers us the opportunity of a fresh start with the public on this issue.” [S.D.]
This could be used as an opportunity to brush the past aside and say time for a fresh start, but it can only be so if there is confidence of change.
NHS England cannot now put a hand over its eyes and hope the issues go away or that it’s only about communications.
The past needs fisking, issue by issue, to avoid they happen again. And the real risks need addressed, not glossed over. Why?
Because let’s assume the public all thinks it’s fine, and none of us opt out. Then through these still flawed process holes, a huge data leak. The public loses trust all over again, and the opportunity for the care.data benefits is lost forever.
Get it right now, and you build a trustworthy and seaworthy future, for the future public good.
There are other more detailed questions I would raise, [I previously worked in functional database design amongst other things] and I will believe these recommendations will have an effect, if and when I see the words become actions. The Review by PwC and Sir Nick Partridge is a positive listening and speaking exercise, but the plans must become reality with actions, some under legislation, in my view.
And perhaps the simplest, unspoken point seems to being deliberately ignored as if just not seen, unmentioned, except by data protection gurus [7]. There is legal obligation to provide information to citizens before their data is released, in a transparent way, to whom and for what purpose. What happened to Fair Processing? [8] Past and present?
Sir Kingsley Manning, Chair of HSCIC, asked in the Guardian on 22nd January [9] that we have ‘intelligent, grown up debate’ about data sharing. Well my hand is certainly off my mouth. I wrote a feature in my local paper and I’m still speaking to anyone I can to promote fact-based informed decision making. But wider Public Debate is still sorely lacking [BBC Question Time anyone?] Through it, I’d like to encourage wider knowledge of the why, who and what of secondary purposes of data sharing and to ensure we can get it done transparently and safely.
Why?
To ensure we, as patients, continue to trust telling our GPs and hospital consultants all the information that we need to, and have no fear it will be held against us by an insurer or others.
We need to trust we will not be penalised whether through disclosure, by stigma and exclusion from policy or care; or whether by opting out, we could be penalised for not participating and not get ‘advantages’ offered to others, just like store loyalty cards.
We may think the insurance debate is irrelevant, if like me, we are not ‘self-payers’ or don’t use a private insurer. With a £30bn gap in planned budget and needed spend over the next five years, someone is still going to be paying for our healthcare.
If it’s not the State, then who? The risk more of us will pay for our own care in future is real. If not for us, for our kids, and their privacy will be a whole different ball game if genomics gets involved.
Meanwhile, we are told for care.data identifiable personal data is crucial for patient safety tracking. In my opinion, patient safety will be harmed if confidence in confidentiality fails. The relationship between clinician and patient will be harmed. And no number of Dr. Foster Intelligence reports by tracking quality or safety, will be able to fix those failures which it has helped create.
Perhaps most tellingly, NHS England is still to make a statement on the Review. There is no news yet here.
It still seems to me the NHS England leadership and its data sharing policy carried out through IC past and present, wants to continue without grown up debate under the PR motto ‘it’s all going jolly well’, and to act with the attitude of a teenager, who with a shrug of the shoulders will tell you:
‘It’s easier to ask for forgiveness than permission.’
***********
January 25th, 2014 – my ICO complaint / guidance request
{abbreviated only to show issues I feel still need addressed}
Dear ICO
I would like to ask for your urgent advice.
I am a mother of X children under 12. […] Our confidential patient data is being extracted via care.data to the HSCIC. Until my recent research to understand what this was all about, I did not know that HSCIC stored all our patient confidential health data from all sorts of health providers: Hospitals, Mental Health, National Child Measurement Programme, [10] Immunisations and Health visitors.
I have not knowingly given my permission for our data to be stored or transmitted to or from HSCIC in any format in the past. If by signing a consent form for treatment I also signed consent for sharing with this central body, it was without my knowledge and therefore without informed consent.
I have significant concerns over its use, now that I understand how widely our patient data may be used and now even shared abroad. [11] […]
There is no public information on :
1. How long our data will be stored for – data retention and data deletion and cross border governance
2. There is no opportunity for health record deletion of anything which was simply a mistake i.e.: recorded on the wrong record, or a misinformed opinion on lifestyle entered by the GP, not fact
3. How will future governancebe assured that it will not be slackened to allow less strict pseudonymisation, and identifiable releases; for example to US firms who establish themselves in the NHS England healthcare market?
I do not believe that the legal rights created through the Health and Social Care Act are sufficient justification to overrule the Common Law of Confidentiality, and the Data Protection Act 1998. [And the data shared before 2012 was not covered by the Act which did not exist and was not retrospective.] Even if the dissent codes are applied, patient data has been or will be extracted to the HSCIC (without my permission) and it will contain identifiable items such as clinician name, practice and CCG locations, and referral dates which may be used as identifiers to connect with HES data stored at HSCIC – since HSCIC also holds data in the Personal Demographics Service [PDS], [12] I believe they may also link the data [13] then to my personal demographic identifiers. Just an undefined or internal governance procedure to suggest that they would not, when it is technically possible, is not sufficient oversight. […]
I do not consent for the use of our [hospital HES or other] data in health research – because it has not been explained to me, what that term means and the implications of this assumed consent.
I cannot know what the other future uses will be for our health information stored today. I do not feel that I can apply any fair processing to their health records due to the lack of publicly available information and scope of the full uses of their data today and in future. […]
[5] Health Select Committee 8th April 2014 http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/handling-of-nhs-patient-data/oral/8416.html
[6] Simon Denegri’s blog response to the Partridge Review http://simondenegri.com/2014/06/17/partridge-reviews-elegant-demolition-of-past-practice-on-personal-data-offers-opportunity-for-fresh-start-with-the-public/
[7] Information Rights and Wrongs – Jon Baines’ blog http://informationrightsandwrongs.com/2014/06/18/the-partridge-review-reveals-apparently-huge-data-protection-breaches/
[11] Data use in the USA Memorandum between DH, HSCIC and the US Dept of Health and Human Services to include exploring secondary stores http://www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf
[13] Data Linkage Service at HSCIC to manage the requests for data which is stored in different silos and brought together on request http://www.hscic.gov.uk/dles
Image courtesy of an interesting post on the history of the featured monkeys: http://frontiersofzoology.blogspot.co.uk/2013/04/why-are-three-wise-monkeys-usually-apes.html
“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] andHarvey 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.datascope 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.”
[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
[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
[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
[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
“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.
‘”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 commercialuses 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.
“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.
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.
[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’
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?
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.
![care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part one]](https://jenpersson.com/wp-content/uploads/2014/07/chopin-664x372.jpg)
