Category Archives: transparency

#caredata, care.data, communications, confidentiality, NHS, NHSEngland, privacy, transparency, trust, women

care.data – the cut-outs: questions from minority voices

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]

My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

After taking part in the care.data advisory group public workshop 10.30-1pm on Saturday Sept 6th in London, I took advantage of a recent, generous gift; membership of the Tate. I went to ‘Matisse – the cut outs’ art exhibition.  Whilst looking around it was hard to switch off the questions from the morning, and it struck me that we still have so many voices not heard in the discussion of benefits, risk and background to the care.data programme. So many ‘cut out’ of any decision making.

Most impressive of the morning, had been the depth and granularity of questions which were asked.  I have heard varying aspects of questions at public events, and the subject can differ a little based on the variety of organisations involved. However, increasingly, there are not new questions, rather I hear deeper versions of the questions which have already been asked, over the last eighteen months. Questions which have been asked intensely in the last 6 months pause, since February 2014 [2] and which remain unanswered. Those from the care.data advisory committee and hosting the event, said the same thing based on a previous care.data advisory event also.

What stood out, were a number of minority group voices.

A representative for the group Friends, Families and Travellers (FFT) raised a number of excellent questions, including that of communications and ‘home’ GP practices for the Traveller community. How will they be informed about care.data and know where their ‘home’ practice is and how to contact them? Whose responsibility will that be?

I spoke with a small group a few weeks ago simply about NHS use in general. One said they feared being tracked down through a government system [which was used for anything other than clinical care]. They register with new names if they need to access A&E. That tells you already how much they trust ‘the system’. For the most part, he said, they would avoid NHS care unless they were really desperately in need and beyond the capability of their own traveller community ‘nurse’. The exception was childbirth when this group said they would encourage expectant mums to go into hospital for delivery. They must continue to do so when they need to and must feel safe to do so. Whether in general they may use primary care or not, many travellers are registered at GPs, and unless their names have been inadvertently cleansed recently, they should be contacted before any data extraction as much as anyone else.

Our NHS is constitutionally there for all. That includes groups who may be cut off from mainstream inclusion in society, through their actions, inaction or others’ prejudice. Is the reality in this national programm actively inclusive? Does it demonstrate an exemplary model in practice of what we hear said the NHS aims to promote?

Transgender and other issues

The question was posed on twitter to the event, whether trans issues would be addressed by care.data. The person suggested, that the data to be extracted would “out us as probably being trans people.” As a result,  she said “I’d want to see all trans ppl excluded from care.data.”

Someone who addressed ‘her complex gender identity’ through her art, was another artist I respect, Fiore de Henriquez. She was ‘shy of publicity.’ One of her former studios is filled with work based on two faces or symbiotic heads, aside from practice pieces for her more famous commissioned work.For her biography she insisted that nothing be concealed. “Put in everything you can find out about me, darling. I am proud to be hermaphrodite, I think I am very lucky, actually.” However, in her lifetime she acknowledged the need for a private retreat and was shy until old age, despite her flamboyant appearance and behaviour. You can see why the tweet suggested excluding any transgender data or people.

‘Transgender issues’ is an upcoming topic to be addressed at the NHS Citizen even on 18th September as well. How are we making sure these groups and the ‘other’ conditions, are not forgotten by care.data and other initiatives? Minorities included by design will be better catered for, and likely to participate if they are not simply tacked on as an afterthought, in tick-box participation

However, another aspect of risk is to be considered – missing minorities 

Any groups who opt themselves out completely, may find that they and their issues are under represented in decision making about them by commissioners and budget planning for example.  If authorities or researchers choose to base decisions only on care.data these discrepancies will need taken into account.

Ciarán Devane highlighted this two-sided coin of discrimination for some people. There are conditions which are excluded from care.data scope. For example HIV. It is included in HARS reporting, but not in care.data. Will the conditions which are excluded from data, be discriminated against somehow? Why are they included in one place, not in another, or where data is duplicated in different collections, where is it necessary, where is the benefit? How can you make sure the system is safe and transparent for minorities’ data to be included,  and not find their trust undermined by taking part in a system, in which they may have fears about being identified?

Missing voices

These are just two examples of groups from whom there had been little involvement or at least public questions asked, until now. The traveller and transgender community. But there are many, notably BME, and many many others not represented at any public meetings I have been at. If they have been well represented elsewhere, any raw feedback, with issues addressed, is yet to be shared publicly.

Missing voices – youth

A further voice from which we hear little at meetings, because these meetings have been attended as far as I have seen so far, mainly by older people, is the voice of our youth.

They are left out of the care.data discussion in my opinion, but should be directly involved. It is after all, for them that we need to think most how consent should work, as once in, our data is never deleted.

Whilst consent is in law overridden by the Health and Social Care Act, it is still the age old and accepted ethical best practice. If care.data is to be used in research in future, it must design best practices now, fit for their future purposes.

How will our under-18s future lives be affected by choices others make now on their behalf?

Both for them as the future society and as individuals. Decisions which will affect research, public health planning and delivering the NHS service provision as well as decisions which will affect the risk of individual discrimination or harm, or simply that others have knowledge about their health and lifestyle which they did not choose to share themselves.

Some people assume that due to social networks, young people don’t care about privacy. This is just not true. In fact, studies show that younger people are more conscious of the potential harm to their reputation, than we may want to give them credit for.

This Royal Academy of Engineering report, [3]” Privacy and Prejudice – Young People’s views on the Development of Electronic Patient Records” produced in conjunction with Wellcome from 2010, examines in some depth, youth opinions of 14-18 year olds.  It tackles questions on medical data use: consent, control and commercialism. The hairy questions are asked about teen access to records, so when does Gillick become applied in practice and who decides?

The summary is a collection of their central questions and its discussion towards the end, which are just as valid for care.data today, as well as for considering in the Patient Online discussion for direct care access. I hope you’ll take time to read it, it’s worth it.

And what about the Children?

Some of our most vulnerable, will have their data and records held at the HSCIC. There are plans for expansion rapidly into social care data management, aligned with the transformation of health and social services. Where’s the discussion of this? Does HSCIC even have the legal capacity to handle children’s social care data?

How will at-risk groups be safer using this system in which their identities are less protected? How will the information gathered be used intelligently in practice to make a difference and bring benefit? What safeguards are in place?

“Future releases of new functionality are planned over the next 12 months, including the introduction of the Child Protection – Information Sharing application which will help to improve the protection of children who have previously been identified as vulnerable by social services.” (ref: HSCIC Spine transition)

“Domestic violence can affect anyone, but women,
transgender people and people from BME groups are at higher risk than the general population.”
(Ref: Islington’s JSNA Executive Summary – 9 – August 2014)

 

We must ask these questions about data sharing and its protection on behalf of others, because these under represented groups and minorities cannot themselves, if they are not in the room.

Where’s the Benefit?

We should also be asking the question raised at the event, about the benefits compared with the data already shared today. “Where’s the benefit?”, asked another blogger some time ago, raising his concerns for those with disabilities. We should be asking this about new dating sharing vs the many existing research databases and registries we already have, with years of history. Ciarán Devane wisely asked this on the 6th, succinctly asking what attendees had expressed.

“It will be interesting to know if they can demonstrate benefits. Not just: ‘Can we technically do this?’ but: ‘If we see primary care data next to HES data, can we see something we didn’t see before’?”

An attendee at the Healthwatch run care.data event in Oxford last week, asked the same thing. NHS England and IT providers would, one would think, be falling over themselves to demonstrate the cost/benefit, to show why this care.data programme is well managed compared with past failures. There is form on having expensive top down programmes go awry at huge public expense and time and effort. On NpfIT “the NAO also noted that “…it was not demonstrated that the financial value of the benefits exceeds the cost of the Programme.”

Where is the benefits case for care.data, to weigh against the risks? I have yet to see a publicly available business case.

The public donation

Like my museum membership, the donation of our data will be a gift. It deserves to be treated with the respect that each individual should deserve if you were to meet them face-to-face in the park.

As I enjoyed early evening sun  leaving the exhibition, the grassy area outside was packed with people. There were families, friends, children, and adults on their own. A woman rested heavily pregnant, her bump against her partner. Children chased wasps and stamped on empty cans. One man came and sold me a copy of the Big Issue, I glimpsed a hearing aid tucked into a young woman’s beehive hair, one amputee, a child with Down Syndrome giggling with a sister. Those glimpses of people gave me images I could label without a second glance. Disabled. Deaf. Downs. There were potentially conditions I could not see in others. Cancer. Crohn’s. Chlamydia. Some were drinking wine, some smoking. A small group possibly high. I know nothing about any of those individuals. I knew no names, no addresses. Yet I could see some familial relationships. Some connections were obvious. It struck me, that they represented part of a care.data population, whom buyers and researchers  may perceive as only data. I hope that we remember them as people. People from whom this programme wants to extract knowledge of their lifestyles and lives, and who have rights to express if, and how they want to share that knowledge. How will that process work?

Pathfinders – the rollout challenges that remain?

At the advisory group led meeting it was confirmed that pathfinders, would be chosen shortly.

[CCGs were subsequently announced here,  see related links, end of page for detail, note added Oct 7th]

But  the care.data programme is “still delivering without a business case”.  Despite this, “between two and four clinical commissioning groups will be selected, “in the coming weeks” to begin the pathfinder stage of the care.data programme, ” reports NIB meeting[8]

It reports what was discussed at the meeting.

“The pathfinders will test different communication strategies before moving forward with the data extraction part of the project.”

I for one would be extremely  disappointed if pathfinders go ahead in the ‘as is’ mode.  It’s not communications which is the underlying issue still. It’s not communications that most people ask about. It’s questions of substance, to which, there appear to be still insufficient information to give sound answers.

Answers would acknowledge the trust in confidentiality owed to the individual men, women, and children whose data this is. The people represented by those in the park. Or by the fifty who gave up their time on a sunny Saturday to come and ask their questions. Many without pay or travel expenses just giving up their time. Bringing their questions in search of some answers.

The pathfinder communications cannot be meaningfully trialled to meet the needs of today and the future design, when the substance of key parts of the message is uncertain. Like scope.

The care.data advisory group and the Health and Social Care Information Centre , based on the open discussion at the workshop both appear to be working, “anticipating things to come…” and to be doing their best to put processes and change in place today, which will be “in step with the future.”

To what extent that is given the right tools, time and support to be successful with all of the public, including our minorities, I don’t know. It will depend largely now on the answers to all the open questions, which need to come from the Patients and Information Directorate at the Commissioning Board, NHS England.

After all, as Mr.Kelsey himself says,

“The NHS should be engaging, empowering and hearing patients and their carers throughout the whole system all the time. The goal is not for patients to be the passive recipients of increased engagement, but rather to achieve a pervasive culture that welcomes authentic patient participation.”

What could be less empowering than to dismiss patient rights?

The challenge is: how will the Directorate at NHS England ensure to meet all these technical, governance and security needs, and yet put the most important factors first in the design; confidentiality and the voice of the empowered patient: the voice of Consent?

*****

This post captured my thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.” This was about the people side of things. Part two, focuses on the system part of that.

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Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

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[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] https://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1

 

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More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

#caredata, care.data, HES, HSCIC, leadership, privacy, research, scope, transparency, trust

care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part one]

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?”

Around 100 interested individuals filled a conference room at the King’s Fund, on Cavendish Square in London last Monday, July 21st, where the Health and Social Care Information Centre (HSCIC) [1] held a meeting to publicly discuss the Partridge Review [2] and HSCIC data sharing policies, practices and stakeholder expectations going forward.  Driving Positive Change.[3]

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

After the event, walking back to the train home, I passed the house from which Chopin left, to play his last concert. [4]

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.

And  what do you think of the show so far? [7]

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?

Will our health data sharing be a virtuoso performance [8]? Or will we end up with a second rate show, where we will look back and say, we had all the right notes, but played them all in the wrong order [9]?

{Update August 6th, official meeting notes courtesy of HSCIC}

I look forward to the future and address this more, as we did in the second part of the meeting, in my post Part Two. [10]

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[1] The Health and Social Care Information Centre – HSCIC

[2] The Partridge Review – links to blog post and all report files

[3] HSCIC Driving Positive Change http://www.hscic.gov.uk/article/4824/Driving-positive-change

[4] Chopin’s Last concert in London http://www.chopin-society.org.uk/articles/chopin-last-concert.htm

[5] What are we doing in England to be the world-class player that the Prime Minister said he wants? https://www.gov.uk/government/news/record-800-million-for-groundbreaking-research-to-benefit-patients

[6] A Health Research Remote Data Lab (HRRDL) concept for the ASH consultation – https://medconfidential.org/2014/hrrdls-for-commissioning/

[7] “What do you think of the show so far?” A classic Waldorf and Statler line from the Muppet Show. https://www.youtube.com/watch?v=jJNxj1FdKuo&list=PL1BCB0B838EBE07C6&index=12

[8] Chopin Rubenstein Piano Concerto no.2 with Andre Previn https://www.youtube.com/watch?v=T_GecdMywPw&index=1&list=RDT_GecdMywPw

[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]

**** In case care.data is news for you, here is a simple guide via Wired  and a website from GP and Caldicott Guardian Dr. Bhatia > the official NHS England page is here   ****

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Fun facts: From The Telegraph, 2010: Prince of The Romantics by Adam Zamoyski

“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.

#caredata, care.data, confidentiality, genomics, HES, HSCIC, leadership, NHSEngland, politics, privacy, Tech, transparency, trust

care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two]

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.

reputation
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.

How can we expect China [1] with whom the British Government recently agreed £14 billion in trade deals, [2] India, the country to which our GP support services are potentially poised to be outsourced through Steria [3] or any other organi Continue reading care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two] →

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

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

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

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

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

The Commissioner begins:

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

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

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

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

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

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

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

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

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


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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(b)the promotion of health.

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

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

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

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

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

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

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

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

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

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

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

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

As Sir Manning said,

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

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

Julie Brill’s Statement made a recommendation:

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

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

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

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

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

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

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

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

The care.data storm may not yet be over.

*****

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

******

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[16] Letter from Jeremy Hunto HSCIC regarding patient confidentiality

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

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

#caredata, communications, leadership, Tech, transparency

Appendix F. For successful technology, reality must take precedence over public relations.

Richard Feynman
Richard Feynman via brainpickings.org bit.ly/1q1qWLt

June 6th 1986. Six months after the disaster, the Report to the Presidential Commission was released about The Space Shuttle Challenger.

Just over twenty eight years ago, I, like fellow children and citizens around the world, had watched the recorded images from January 28th 1986. We were horrified to see one of the greatest technological wonders of the world break up shortly after launch and crash into the sea minutes later. The lives of Challenger’s seven crew were lost, amongst them the first ‘ordinary citizen’ and member of the teacher in space project, mother of two, Christa McAuliffe.

As part of the follow up audit and report, Richard Feynman’s personal statement was included as Appendix F. Personal observations on reliability of the Shuttle. You can read his full statement. Below are just his conclusions and valuable lessons learned.

“If a reasonable launch schedule is to be maintained, engineering often cannot be done fast enough to keep up with the expectations of originally conservative certification criteria designed to guarantee a very safe vehicle. In these situations, subtly, and often with apparently logical arguments, the criteria are altered so that flights may still be certified in time.

They therefore fly in a relatively unsafe condition, with a chance of failure of the order of a percent (it is difficult to be more accurate).

Official management, on the other hand, claims to believe the probability of failure is a thousand times less. One reason for this may be an attempt to assure the government of NASA perfection and success in order to ensure the supply of funds. The other may be that they sincerely believed it to be true, demonstrating an almost incredible lack of communication between themselves and their working engineers.

In any event this has had very unfortunate consequences, the most serious of which is to encourage ordinary citizens to fly in such a dangerous machine, as if it had attained the safety of an ordinary airliner.

The astronauts, like test pilots, should know their risks, and we honor them for their courage. Who can doubt that McAuliffe was equally a person of great courage, who was closer to an awareness of the true risk than NASA management would have us believe?

Let us make recommendations to ensure that NASA officials deal in a world of reality in understanding technological weaknesses and imperfections well enough to be actively trying to eliminate them. They must live in reality in comparing the costs and utility of the Shuttle to other methods of entering space. And they must be realistic in making contracts, in estimating costs, and the difficulty of the projects.

Only realistic flight schedules should be proposed, schedules that have a reasonable chance of being met.

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.”

Richard Feynman, 1918 -1988

“The Challenger accident has frequently been used as a case study in the study of subjects such as engineering safety, the ethics of whistle-blowing, communications, group decision-making, and the dangers of groupthink. It is part of the required readings for engineers seeking a professional license in Canada and other countries.” [Wikipedia]

Feynman’s Appendix F: Personal Observations on Reliability of the Shuttle is well worth a read in full.

From a business management point of view, Lessons Learned are integral to all projects and there is no reason why they cannot apply across industries. But they are frequently forgotten or ignored, in a project’s desire to look only ahead and achieve future deliverables on time.

Lessons learned can make a hugely important contribution to positive change and shaping outcomes. Assessing what worked well and how it can be repeated, just as important as learning from what went wrong or what was missing.

Public relations efforts which ignore learning from the past, and which fail to acknowledge real issues and gloss over reality doom a project to failure through false expectation. Whether due to naivety, arrogance, or under leadership pressure, it can put a whole project in jeopardy and threaten its successful completion.  Both internal and external stakeholder management are put at unnecessary risk .

In the words of Richard Feynman, “For successful technology, reality must take precedence over public relations.”

#caredata, care.data, communications, NHS, transparency, trust

care.data – Transparency and Remit vs Truth and Responsibility

A year ago Big Brother Watch wrote that an opt out right had been won from the original plan to extract all our GP records without any choice. Caught trying to avoid the DPA and Fair processing, ICO recommended the need for a public awareness campaign.

At that time, I was a merry mother unaware of the machinations of our civil society. Then the powers-at-be closed my local mini blood mobile (I had just started as a donor) and decided to sell off our plasma supply, which was considered a rather poor idea so I read all the Annual Reports and asked questions about it. And I started to pay rather more close attention to what was going on in health. Now I listen to Radio 4 not 2, I buy papers (actual, printed versions) and would you believe, watch Parliamentary TV. And if you want more scandal which actually matters more than your average soap, you should too.

On the 8th April the Health Select Committee (at least part of it) interviewed Sir Kingsley Manning and Max Jones from the Health and Social Care Information Centre. The hope for us, as citizens and patients whose data this current debate is about, is that we will gain insight and understanding into how our medical records have been used in the past and are being so now. This will enable us to trust in the intent of how HSCIC will handle our patient data in the future, whether under the care.data or any other label.

If HSCIC and Government wants to achieve this, they seem to be going a backwards way about it.

Stop talking transparency and remit, and start talking truth and responsibility.

The question was asked how decisions are made within HSCIC by their Data Access Advisory Group about our patient data management. Specifically, it discussed the subject of an application from last summer by the Cabinet Office OC/HES/030 – Project National Citizen Service Data Linkage Project. It was included only 6 months later in the January 2014 minutes.

The very application title, reveals its intent, to link the mental health and hospital records of our young people who take part in the National Citizen Service together with their NCS project gathered data.

Caught with this concrete ‘Out of Committee’ governance approach, the HSCIC staff were both adamant in response to the MP’s question in insisting that no data was shared. 

“Q230 Barbara Keeley: What was requested was linkage of data, wasn’t it? It was linkage to medical data.
Kingsley Manning: No, he was asked by the Cabinet Office to give professional advice on the consent model they were considering. He gave that advice, which was a perfectly sensible thing for him to do. That was the end of the matter.”

Well, I’m sorry but I’ve read the document, And the DAAG minutes say clearly “The intention was to link to HES/MHMDS in the future.” I paste it below.

So, that was not the end of the matter, but is in fact the beginning. The intent is for future data sharing. Our young people at the start of their adult lives, by the very fact of taking the initiative and enquiring to take part in the Activities / Community Project-based work of the NCS, will find their intimate health records linked with the project data, with an unspecified end date.This is a real and active request which was approved, not some past mistake to dismiss. It was and still is approved, “for future data sharing.”

Whilst I may believe HSCIC that no data was shared last summer,  and I might believe you were trying to be factual in answering the question, I do not believe that even you could think that consent advice was the sole intent of the DAAG approval, had you read the minutes of your own DAAG meeting. And clearly you had or would not have been so adamant in the answers.

The Guardian article Mrs. Keeley MP mentions, also had their own opinion of the relationships between the parties involved.

Bizarrely almost, we are repeatedly told as reassurance that any organisation with access to pseudonymous health data, which tries to re-identify the individuals whose data it was, would be doing so illegally. Yet the Cabinet Office wants to take medical records and match it to known individuals on their youth programme and keep and share those enriched records without it seems, any qualms at all?

Our trust needs to be based on absolute truth, not manufactured transparency. Truth is bigger and complete with background intent. Not just scraping out the minimum facts in carefully worded language to be legally compliant.

To increase our public trust, we have been told we will know who has had our data in the past, when and for what purposes. In Parliament on March 25th Dan Poulter Health Minister said,  “a report detailing all data released by the HSCIC from April 2013, (including the legal basis under which data was released and the purpose to which the data are being put), will be published by HSCIC on April 2.”

It didn’t happen. HSCIC made available only some. Those made under some sort of data agreement. What of those with direct access to HES at their site, or the police, others have asked?

The Commissioning Board NHS England, tells us repeatedly that they contacted every household in England by leaflet to tell us about care.data and our ‘choice’ to object.

It didn’t happen. Many did not get a leaflet, not just those who opted out of junk mail. Tim Kelsey said he was looking into it. With urgency. Two months later, not a cheep!

So far, we have no report or indication there will be any. Why there were not enough or not delivered leaflets? What they are doing to fix that? It cost the equivalent of at least 50 nurses’ annual salary and the best publicly avaialble information we have from the Information Commissioner’s Office, is that it should never have gone ahead at all. 

So who is taking responsibility for that? Over £1M of public money junked through some letter boxes for the dog to eat. Which no one could understand because it was deliberately obtuse.

And so we come to our future Data Controllers HSCIC. Who seem to have no control at all.

Based on their own admission they have no idea where our medical records are being used, by whom today, and yet we are expected to trust them to use care.data wisely in future?

Barbara Keeley: So have you got the information because I have asked for it twice, but not been given it? For all those 249 organisations with a commercial reuse licence, can we know who all the end users of our data are?

Kingsley Manning: No, because they are using it and putting it into additional services. So, for example, a company such as McKinsey or KPMG would have used it to support Monitor or the NHS TDA in advising on the transformation of health care services.

The Chair of the Heath and Social Care Information Centre has no idea know who has our medical and personal confidential data or what they are using it for.

You get the feeling now, that they are only looking into all of this because they got caught having had no audits in the past of data recipients. Sir Nick Patridge is now leading a review due in a couple of weeks. I sincerely and respectfully hope that his review is more transparent than the last.

Who has taken responsibility for where we have got to in the last year?

Government? Mr. Poulter, Hunt or Cameron, whose plan is this anyway? There has been nothing but dismissive comment which fails to address serious issues and party political point scoring, or no comment at all but how “fantastic for humanity” it will be. Yet care.data is meant ‘only for commissioning.’ See why we’re confused Mr. Hunt and Poulter when you both claim care.data has entirely different purposes? Where is the truth we can trust?

NHS England? Mr. Kelsey now seems to be hiding behind a tree. Or perhaps playing jazz as he tweeted the night before the Public Health Select Committee the last time. Whilst I appreciate it was at a health conference, Nero and Rome sprang to mind. I’ve asked nicely and been ignored, what happened and who is fixing it? Will there be some sort of public progress announcement from NHS England, perhaps from Ciarán Devane, who is on NHS England Board and now chairing the Care.data Advisory Committee trying to latch the stable door? There’s just been stunning silence since the pause announcement.

HSCIC? Clearly nothing to expect from them. Because Kingsley Manning and Max Jones seemed to believe everything was in their remit, legal, and not their fault if the directions from government and NHS England allowed sharing data with all comers. And their Get-Out-of-Jail-Free-Card, they shared concern with the Department of Health about the publicity campaign. (Admittedly, 3 months after the GPES advisory group and others had done so).

Amazingly, Kingsley Manning seemed to thrust the opt out rate from HES into the arena as some sort of achievement. “in terms of the number of people who have acted to opt out, it is 14 over the past four years.”

Which only confirms how few of us knew HSCIC stored it and could link Secondary Uses data with Personal Demographic data on demand. (Compared with how many are opting out now we know, of care.data).

And whilst until this whole debacle I and most of the public did not know our hospital records were shared with any other organisations, beyond the NHS and legitimate public research, we now find the gradually closing net around our health data uses, means understanding it has gone to all sorts of commercial organisations. And clearly HSCIC has been caught doing something which now feels wrong even if legal, the HSCIC defended not the action, but their legitimacy for doing so:

Kingsley Manning: We operate according to the Act as it has been passed. We make decisions on the basis of the current regulations. It is not our job to make a judgment on whether we agree or disagree with the nature of a commercial organisation. That is not a criterion on which we act.

Q270 Barbara Keeley: So you are prepared to release even sensitive data out to organisations that just want to do a price comparison website on different pay procedures between different hospital consultants. That was what you did.
Kingsley Manning: I am terribly sorry, but we are bound by the law and the regulations. Under the current regulations that is perfectly legal and legitimate. Indeed, it is arguable that it is a benefit to the health and social care system as a totality. That is an argument that you, Parliament and the public will have to consider.

As part of the public, I have considered it. Too often in the last 8 months. Even whilst making yellow pea soup today, I was thinking how wrong it is for the government to sell our confidential data without having asked us if they could have it in the first place. To take something without asking, we teach our children, is wrong.

Not one person responsible for their part in the execution of the care.data rollout has yet said they are sorry as an apology. I am terribly sorry here, was interchangeable with ‘well, pardon me.’ 

But a true apology for such an almighty mess (Ben Goldacre said so on twitter in better words on February 22nd, but I try and keep readable above a PG rating), would at least be an admission that there is room for improvement. Improvement we can hope to build trust upon. Right now, we have vital Public Health research which it appears, is now on hold and costing money, because it is lumped in with all these commercial uses.

People are opting out of clinical research. And withholding information from their GPs.

Between the three of your organisations, Government, NHS England and HSCIC, if you want us to trust your intentions for the handling of our NHS patient data in future, try harder. Try to seem truthful and seem like you care. And mean it.

Because right now, it only looks like you’re sorry you got caught. You’re playing pass-the-parcel with responsibility. And using our public money to do so.

Kingsley Manning said previously, we should have “intelligent grown up debate” around care.data. Please, lead the way. For right now, it feels like kids squabbling in the back of the car, hoping we’ll just muddle though to get to October and they can ask, “are we there yet?”

As anyone with kids will know, that doesn’t make for happy parents.


********* For reference, the Health Select Committee extract about the Cabinet Office OC/HES/030 – Project National Citizen Service Data Linkage Project *********

Barbara Keeley: There was a lot of saying, “It’s nothing to do with us, guv; this all happened in the past.” You answered the question in that way when this person was a very senior manager, to the extent that he accompanied the Secretary of State on a trip to the United States to sign a data-sharing memorandum of understanding, and, to me, it is astonishing that you should say that the person who had been the chair of the DAAG did not have that responsibility and that you are still wriggling to try to get out of that now. I am not happy with that answer, Chair; I just do not think that is acceptable. 

Kingsley Manning: I am sorry. We are trying to be as transparent as possible.

Barbara Keeley: I don’t think so. I really don’t think so.
Kingsley Manning: May I just talk you through the history of this so that you can get a sense of it? [see full text for history] At that point, we knew that Dr Davies was redundant. He had been made redundant on the abolition of the information centre, and we put in place a plan to deal with that. He was in post. We were not in a position—
Q222 Barbara Keeley: Sorry—you had a plan to make him redundant last year?
Kingsley Manning: No, no. He was made redundant by virtue of the abolition of the NHS IC. It was not our decision.
Q223 Barbara Keeley: So you kept him on for eight or nine months?
Kingsley Manning: We kept him on because we needed to have cover on clinical governance and on clinical advice.
Q224 Barbara Keeley: In fact, he was a very senior manager, and he did accompany the Secretary of State on the visit when they shared the memorandum of understanding. And—
Kingsley Manning: He did. I was there also.
Q225 Barbara Keeley: Let me say a bit more. This is the person that you were making redundant, but you let him chair the DAAG, and he made a number of controversial decisions, including the decision out of committee to release the sensitive medical records of individual teenagers—
Kingsley Manning: I am sorry; that is not true, I am afraid.
Q226 Barbara Keeley: It was reported to be true—
Kingsley Manning: I think you are referring to the fact that he was asked to give advice by the Cabinet Office. He had actually worked for the Cabinet Office on the matter. He gave advice on the consent model that they were going to use. We never released any data and we have not been asked for any data by the Cabinet Office on this matter.
Q227 Barbara Keeley: This was reported last summer by The Guardian newspaper that the sensitive medical records of teenagers on the National Citizen Service were released. That was apparently “an out-of-committee decision” by the chair. Dr Mark Davies was allowed to make decisions out of committee as the chair, and that decision was apparently taken last summer.
Max Jones: I can clarify that Mark Davies did provide advice, as is one of DAAG’s functions, on the consent model, which was being considered by the Cabinet Office, but we have not received a request for that data, nor have we provided any data. The discussion that Mark had was referenced and recorded in the January—I think it was January; I’ll check in a minute—DAAG minutes.
Q228 Barbara Keeley: At least six months after the discussions took place.
Max Jones: That may be the case.
Q229 Barbara Keeley: So this is the person that you are going to make redundant—
Max Jones: No data was requested nor shared. Advice was requested on the consent model, which was given.
Q230 Barbara Keeley: What was requested was linkage of data, wasn’t it? It was linkage to medical data.
Kingsley Manning: No, he was asked by the Cabinet Office to give professional advice on the consent model they were considering. He gave that advice, which was a perfectly sensible thing for him to do. That was the end of the matter.
 Max Jones: And that was recorded in the minutes of DAAG held—
Q231 Barbara Keeley: Yes, I have a copy of that in front of me. You talked earlier, and it is quite important, about transparency. To have recorded this six months after it happened and to then be trying to change something—I am not aware that The Guardian was challenged on the fact that data had been released. It seems there is a very hurried after-the-event style of things happening here, and that is not good for transparency. This is being talked about quite a bit. People’s confidence in what you do has been really undermined by this and the fact that there could have been any suggestion of linkage to medical records for those people taking part in the National Citizen Service. For heaven’s sake, there are all kinds of undertakings made to them as they sign up to that service, and quite rightly. They even have an opt-in for their personal data, so to even consider that, and not to have documented what was happening until six months after the event, just makes you look shady.
 Kingsley Manning: I agree, but we did not have a data request. I absolutely agree, by the way, with your essential point, which is the sensitivity of linking these data in any way with receipt of data—benefits and all the rest of it.

#caredata, care.data, communications, leadership, transparency, words

Care.Data – Raw Highlights from The Health Select Committee

Words from The Health Select Committee 8th April 2014 – created via Wordle

From the Health Select Committee hearing on Tuesday April 8th, I have waded through all the words to come out with what I think are raw highlights of the key learnings and issues raised. The original in context, is here. The image is an indication of the emphasis of who spoke about what, based on word count alone.

Highlights from the Health Select Committee Members:

“…because what was happening in that meeting was that a lot of wriggling was going on”
“But you wrote to us, Mr Jones, with Mr Kelsey. Following on from my colleagues, we are not quite sure that the answers are very helpful. Could you turn to the letter and I will ask you for some information? This is very concerning and I hope this will be published on someone’s website—either yours or certainly the Health Committee’s website—so that people can see some of these answers and follow them up.”
“When things go wrong, as they appear to have done, we are entitled to ask you questions. I am absolutely appalled. I think the majority of us are, which is why you are back here again to try to work out why you don’t know what is going on in your organisation. This is a simple thing. It is either in the agreement, or it is not. “
“If we go back to the insurance actuaries—the Staple Inn Actuarial Society—these comments are from the report that it produced on the use of 188 million records taken from HES. It talked about the data as being “highly detailed”. We get an answer back saying that the data are in aggregated and anonymised form. Don’t forget that the HES database started off as an admin database for handling payments and information about patients. It was never set up to feed into the insurance industry, was it? After it had run all the things that it wanted for commercial reasons against hospital data, it said that HESID “does allow all periods of care for” a patient “to be identified and linked””
“Well, there is, because normally in the civil service, when there is a debate about something, civil servants will prepare a report, and find out the information and give it to the Minister, so that the Minister tells Parliament the correct position. That is not happening here, is it? A Minister can go into the Chamber and say something that is totally wrong…”
“We need to know what is out there now. There is a very strong feeling—I subscribe to it—that this data is not protected enough and has been let go. It is out there. You mentioned that there were 249 commercial reuse licences, of which 112 are left, but some of the ones I mentioned are also selling it on to other people. We have had lots of examples.”
“I looked at this [HES & other systems opt out] form and I found it difficult. We have been navigating around this system. After all these quite intrusive demands for information, we get on to an explanation of what happens if you request your patient information to be removed or anonymised. It states that “your data will be anonymised rather than removed”, but it goes on to say that there is a further step where you can request removal of your records from the NHAIS. Then it says this most damning thing: if you do that, your GP would no longer wish to have you on their list, and you would not be called for screening for things such as aortic abdominal aneurysm, which is a serious condition. Effectively, that is saying to people, “Yes, we can remove your records, but your GP wouldn’t want you on his list, and you wouldn’t be called for quite serious medical screening.” Surely there is something that falls short of that where a person can say, “I don’t want my records sold to these commercial companies, or to be used by insurance actuaries or comparison websites; I just want them used for my care.” I have asked the Minister this. You have produced a form that, I have to tell you, is quite scary. It is quite intrusive and it is quite scary. It says that if you fill it right to the end—it is quite confusing as to whether there are different steps here—your GP would no longer wish to have you on their list, and you wouldn’t be called for screening for serious medical conditions.” [note this is not the care.data opt out, but an additional choice]
“What we are talking about is audit. Can you audit? There are apparently going to be audits. Can you audit all the data releases? Can you say for all the HES data where it has gone, who is using it and for what?”
“there is a real difference from your pronouncements of what you say is the situation with data and what the people out there—commercial organisations that have HES data and already have large databases—are saying.”
“You have been seeking to demonstrate to us that you believe that the control regime you apply is effective for HES data, but now we are saying that for GP data, the control regime in future will be fundamentally different.”
“You said it would be treated differently “at its launch”. What changes do you anticipate? In other words, are we actually saying that we will pretend to give you additional security until we get that information from the public and the GPs, and after that we will subject it to different tests? In other words, this is a con job isn’t it? Dick Turpin with or without a mask is still Dick Turpin.”
“We don’t. There is actually no right to opt out in law. The Secretary of State has agreed that any objection will be dealt with, but we do not have a legal right.”
“That is CPRD, isn’t it? Is there any plan to bring CPRD under the HSCIC?”
“But the question I put to the Minister, which we do not seem to be getting to, is that I think there is a very strong drive for people to say, “I want my individual health records to be used for my care, and even for commissioning that care, but not for all these other uses.”  I think that is a very powerful desire. Why shouldn’t people ask for that?  The data is about them.”
“The implied consent model breaks down at the point at which people’s data starts to be used for marketing purposes.”
“It is different if your data is being used by researchers and academics, and by people who have built up a career and have integrity.”
“A lot of people are not comfortable that their data are used for such things, and nor am I.  You say that, constitutionally, you cannot make that distinction, but that is the point at which we lose confidence in the consent that was always there.”
““Without pseudonymisation, you risk substantial levels of patient and citizen objections. Without pseudonymisation, you lose data and devalue your dataset. Without pseudonymisation, the GP patient relationship is damaged and care may be impaired.” I must say, I think the patient reasons are a lot more compelling than the IT management reasons.”
“would it not be prudent to wait until you have that report on cyber-security before we press ahead with the data extraction?”

Highlights from the Health and Social Care Information Centre (HSCIC) Max and Manning:
“we have inherited the duties and responsibilities of the information centre and its 500 people, although they have been rewritten in the Act, but that is one part of what is now an organisation of 2,200 people”
“if you can demonstrate where we have not acted within the current law and the current regulations…”
“We need to be much more transparent about that.”
“The security threat and the volume of data are much greater, and the public’s confidence in public bodies to handle data—not just us, but across the whole public sector—has significantly changed. ”
“When I became chairman last June, it was clear that the approaches that had been adopted by the information centre were no longer entirely appropriate, given both the degree of data we were able to collect and a change in public expectations. It was also clear that some of the processes that the previous information centre had been operating were not as transparent or as consumer-friendly, if you like.”
“We think that, as of April 2013, there were 249 organisations that had extant data-sharing agreements issued by the NHS information centre…those data-sharing agreements applied to where we are issuing pseudonymised or identifiable data. This is where there is a theoretical risk of identification, so that is where we have data-sharing or data-reuse agreements in place.  There were 249 in April that had been issued by the NHS IC of which, in April this year, there remain 112, so they are running off as we go forward.”
“One of the areas that we think they should look at is indeed the extent to which we share or should share data with other Government bodies. This is an area where there is a lack of clarity and a great deal of sensitivity. We know from our research, by the way, that one area where we have absolute sensitivity is in this. People are very, very worried about the use of their medical records in any way that might have an impact on their tax returns, their benefits payments, their housing, or any of these things. This is where we would very much welcome the advice of Parliament and CAG—the extent to which this is possible. At the moment, as you know, we have not released any data to DWP or any such body but we absolutely recognise that it is a key issue.”
“The organisation used our logo without coming to us to seek our permission to do so. They were entitled to have access to that data under the agreement which they had..”
“We have an accountable relationship with our sponsor branch within the Department of Health, which results in us having a formal monthly meeting. I meet the permanent secretary on a monthly basis. That is the nature of an arm’s length body. We are accountable, then, through our attempt to be as transparent as possible to the public and Parliament.”
“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.”
“.. I have a suspicion that it is because they [GPs] will not get paid if you are not on the list*.  You won’t appear on the register, and if you are not on the register, they won’t get paid.” [*not with reference to care.data but to the ‘third’ opt out form to opt out for other systems stored at HSCIC].
“At its launch it will be fundamentally different, because that was the basis on which the independent advisory group agreed to the extraction going forward. That was the basis, as I understand it, that NHS England negotiated with the RCGP and the BMA and other representatives. I think that is entirely appropriate.”
“As you are probably aware, there is considerable pressure from medical charities and researchers on the limitations—”
“There are no plans that I am aware of. Just for clarity we do handle data on behalf of CPRD to ensure the pseudonymisation process. We act as a contractor for CPRD”
“I cannot answer that question. I do not have that responsibility. You have to address the question to NHS England.”
“We are extremely concerned about the current threats to data security across the whole health and social care system. We will be carrying forward a series of actions, as I said, to significantly increase our surveillance and measures to attempt to get an enhanced level of assurance across the system as a whole.”
“The record of our ability to deliver high-quality technology systems is in the fact that the lights are on and on all the time in the NHS.”
“We are planning [for care.data launch] on the basis of what has been the last announcement, which is that it will be, I think, in October.”
“We have a good record. I used to be part of the Connecting for Health regime. We had a good working relationship with Atos running the choose and book service. Its delivery and performance on this first extract with the GP extraction software over the last few weeks has been encouraging.”
“Some of the older systems we have within the health and social care system simply cannot handle objections.”
“Patients have the ability to record two types of objection. The first type of objection is to any detailed information about them leaving their GP practice to the HSCIC. “
“The issue regarding what we would call dynamic consent—giving consent for different purposes—is one that we are conscious of. We think that we need to move in that direction.”
“I completely accept that the current consent models are too limited and that the objection process is too complicated. We need to be able to make it reversible as well.”
“the position in terms of care.data is entirely circumscribed.  We have already identified that that data is to be used only for very specific purposes; it will not go beyond that purpose.”
“All Governments have seen that as being a base upon which we can support and promote our health care and pharmaceutical industries. The health care research industry in this country is worth £5 billion a year, which is critical to the UK economy, and it is fundamentally linked to availability of data. The fact that we have that data is critical to the continuation of that research industry in this country. We must therefore balance issues such as privacy, access and the support of the industry. People have to have that debate, but we need to identify benefits from this data, as well as the issues you have raised.”
“Secondly, we have to recognise that we as the HSCIS have an awful lot of other information. When we think about pseudonymisation, we are going to link these data we collect to other data sources”
“We are therefore talking to the research community. It may well be a sensible solution with regard to supporting commissioning, where we may look at the costs and feasibility, to move to a situation where we will effectively provide an analytical service where researchers and others can effectively undertake the research within our data lab. That is something we think is a very good idea. HMRC do it already, and we have looked at that, and also the CMS in the States, which is the equivalent body to ourselves. We think it is very good. I am meeting with the MRC in the near future to discuss it for researchers. “
“In so doing, there was a view taken by the Department of Health and their lawyers that the document that we then produced did not meet the constitutional requirements of being a code of practice. What we did do was publish a guide to confidentiality which meets all the requirements of the code of practice. “
“In terms of your care record, if you opt out of type 1, your data will not be transferred for the purpose of the care.data programme for secondary uses. It won’t affect, by the way, the transfer of data for direct care.  It won’t impact on any direct service to you as a patient.”
“In terms of the number of people who have acted to opt out, [from secondary uses of hospital data, HES] it is 14 over the past four years.”
“we welcome the proposed involvement of the CAG, which would bring precisely that ethical and moral dimension to these decisions. We agree entirely that that dimension has been absent in the past..”
“It does cover HES data. At the moment, the only users of that HDIS service are in the public sector, not the private sector, during the trial period. We also make sure that all individuals who are users have been through individual training.”
“There are always going to be lots and lots of people who want to accumulate lots and lots of data in their own boxes. One of the reasons why we are interested in exploring the idea is because we are getting a plethora of databases being accumulated in universities and various other places. That gives us a technical problem because of the transformation errors that arise. These databases therefore are changed as they go through time.  I suspect that we are always going to have individuals who say, “I want to have my particular database.” We will have to discuss whether that will be feasible; there will always be that tension.”
“I know it is antiquated, but the danger is not the technology, but the people.”
“it deals with security and may include matters that we do not want to have in the public domain, but I am sure we could share it with the Committee on an individual basis. However, I do not want to go through the detail.”
“Our website is incredibly complicated, to say the least—I think we all recognise that. It is extremely good if you plough through it, but if you are unlucky, you will end up downloading 10 million lines of prescribing data.”
“You have raised an interesting point. When somebody says they do not want us to hold their record, do we delete it?”

HSCIC website

#caredata, HES, NHS, QOF, research, scope, scope creep, SCR, Tech, transparency

What is Care.data? Defined scope is vital for trust.

It seems impossible to date, to get an official simple line drawn around ‘what is care.data’. And therefore scope creep is inevitable and fair processing almost impossible. There is much misunderstanding, seeing it as exclusively this one-time GP load to merge with HES. Or even confusion with the Summary Care Record and its overlap, if it will be used in read-only environments such as Proactive care and Out-of-hours, or by 111 and A&E services.  The best unofficial summary is here from a Hampshire GP, Dr. Bhatia.

Care.data is an umbrella initiative, which is planned over many years.

Care.data seems to be a vision. An ethereal concept of how all Secondary Uses (ref.p28) health and social care data will be extracted and made available to share in the cloud for all manner of customers. A global standard allowing extract, query and reporting for top down control by the men behind the curtains, with intangible benefits for England’s inhabitants whose data it is. Each data set puts another brick in the path towards a perfect, all-knowing, care.data dream. And the data sets continue to be added to and plans made for evermore future flows. (Community Services make up 10 per cent of the NHS budget and the standards that will mandate the national submission of the revised CIDS data is now not due until 2015.)

Whilst offering insight opportunity for top down cost control, planning, and ‘quality’ measures, right down to the low level basics of invoice validation, it will not offer clinicians on the ground access to use data between hospitals for direct care. HES data is too clunky, or too detailed with the wrong kinds of data, or incomplete and inaccurate to benefit patients in care of their individual consultants. Prof Jonathan Kay at the Westminster Health Forum on 1st April telling hospitals, to do their own thing and go away and make local hospital IT systems work. Totally at odds with the mantra of Beverley Bryant, NHS England of, ‘interoperability’ earlier the same day. An audience question asked, how can we ensure patients can transfer successfully between hospitals without a set of standards? It is impossible to see good value for patients here.

Without a controlled scope I do not wish to release my children’s personal data for research purposes. But at the moment we have no choice. Our data is used in pseudonymous format and we have no known publicly communicated way to restrict that use. The patient leaflet, “better data means better care” certainly gives no indication that pseudonymous data is obligatory nor states clearly that only the identifiable data would be restricted if one objected.

Data extracted now, offers no possibility to time limit its use. I hope my children will have a long and happy lifetime, and can choose themselves if they are ‘a willing research patient’ as David Cameron stated in 2010 he would change the NHS Constitution for. We just don’t know to what use those purposes will be put in their lifetime.

The scope of an opt-in assumption should surely be reasonably expected only to be used for our care and nothing else, unless there is a proven patient need & benefit for otherwise? All other secondary uses cannot be assumed without any sort of fair processing, but they already are.

The general public can now see for the first time, the scope of how the HSCIC quango and its predecessors have been giving away our hospital records at arms-length, with commercial re-use licenses.

The scope of sharing and its security is clearly dependent on whether it is fully identifiable (red),  truly anonymous and aggregated (green, Open data) or so-called amber. This  pseudonymous data is re-identifiable if you know what you’re doing, according to anyone who knows about these things, and is easy when paired with other data. It’s illegal? Well so was phone hacking, and we know that didn’t happen either of course.  Knowledge once leaked, is lost. The bigger the data, the bigger the possible loss, as Target will testify. So for those who fear it falling into the wrong hands, it’s a risk which we just have to trust is well secured. This scope of what can be legitimately shared for what purposes must be reined in.

Otherwise, how can we possibly consent to something which may be entirely different purposes down the line?

If we need different data for real uses of commissioning, various aspects of research and the commercial ‘health purposes,’ why then are they conflated in the one cauldron? The Caldicott 2 review questioned many of these uses of identifiable data, notably for invoice validation and risk stratification.

Parents should be able to support research without that meaning our kids’ health data is given freely for every kind of research, for eternity, and to commercial intermediaries or other government departments. Whilst I have no qualms about Public Health research, I do about pushing today’s boundaries of predictive medicine. Our NHS belongs to us all, free-at-the-point-of-service for all, not as some sort of patient-care trade deal.

Where is the clear definition of scope and purposes for either the existing HES data or future care.data? Data extractions demand fair processing.

Data is not just a set of statistics. It is the knowledge of our bodies, minds and lifestyle choices. Sometimes it will provide knowledge to others, we don’t even yet have ourselves.

Who am I to assume today, a choice which determines my children have none forevermore? Why does the Government make that choice on our behalf and had originally decided not to even tell us at all?  It is very uncomfortable feeling like it is Mother vs Big Brother on this, but that is how it feels. You have taken my children’s hospital health records and are using them without my permission for purposes I cannot control. That is not fair processing. It was not in the past and it continues not to be now.  You want to do the same with their GP records, and planned not to ask us. And still have not explained why many had no communications leaflet. Where is my trust now?

We need to be very careful to ensure that all the right steps are put in place to safeguard patient data for the vital places which need it, public health, ethical and approved research purposes, planning and delivery of care. NHS England must surely step up publicly soon and explain what is going on. And ideally, that they will take as long as necessary to get all the right steps in the right order. Autumn is awfully close, if nothing is yet changed.

The longer trust is eroded, the greater chance there is long term damage to data quality and its flawed use by those who need it. But it would be fatal to rush and fail again.

If we set the right framework now, we should build a method that all future changes to scope ensure communication and future fair processing.

We need to be told transparently, to what purposes our data is being used today, so we can trust those who want to use it tomorrow. Each time purposes change, the right to revoke consent should change. And not just going forward, but from all records use. Historic and future.

How have we got here? Secondary Uses (SUS) is the big data cloud from which Hospital Episode Statistics (HES) is a subset. HES was originally extracted and managed as an admin tool. From the early days of the Open Exeter system GP patient data was used for our clinical care and its management. When did that change? Scope seems not so much to have crept, but skipped along a path to being OK to share the data, linked on demand even with Personal Demographics or from QOF data too, with pharma, all manner of research institutions and third party commercial intermediaries, but no one thought to tell the public. Oops says ICO.

Without scope definition, there can be no fair processing. We don’t know who will access which data for what purposes. Future trust can only be built if we know what we have been signed up to, stays what we were signed up to, across all purposes, across all classes of data. Scope creep must be addressed for all patient data handling and will be vital if we are to trust care.data extraction.

***

 

#caredata, choice, communications, NHS, Tech, transparency

care.data – 2. A mother’s journey in Oz: communication & choice

David Aaronovitch’s Times’ opinion article on March 27th stated data privacy fears have made health-data sharing “toxic” and that campaigners are nothing but a ‘man with a megaphone’, like the Wizard of Oz. My response, part two. Communications & Choice.

1939 – The Wizard of Oz – MGM

Honesty, clarity and real communication, not PR, is fundamental to a renewal of trust across these areas.

The announcement via HSJ today comes, that the HSCIC Chair had concerns over the impact of the care.data leaflet drop, and asked the Department of Health to intervene. One wonders then, who made the decision to go ahead? 

On care.data communications, the Times commentator said HSCIC has probably thought, “Stick out a leaflet, bish, bash, bosh.” The result seems to be more ding, dong. The balloon upped and left before anyone was ready to go  and ICO, GPs, representatives from the BMA and others, including the campaign group, had well founded, and serious concerns.

I spoke with HSCIC communications and managers directly last October, as well as my MP and the Department of Health, to flag how misleading I felt it was for patients to say ‘your name is not extracted’ when it is held at HSCIC already but most of us did not know that. Many of the same leaflet concerns were, much more significantly than by little ol’ me, raised by both GPES advisory group in September and ICO before the launch. So now, despite the £1-2M state funded doormat drop leaflet & cartoon, it’s all up in the air.

(Whilst I know for HSCIC with its own budget of £220M and control of a £1BN annual spend, it may be peanuts, but what a waste of money. At a conservative estimate of £1M for the leaflet drop, at least 50 nurses could have been employed for a year on that. That makes me cross.) We still have no explanation of why so many did not get delivered, what they did when they heard they had not been nor any plans to clarify that. It was our money spent. We deserve to know.

I received a reply to my October letter, from the Secretary of State to assure me that ‘patient identifiable data was not and will not be shared with third parties’. I think with subsequent information coming out about releases, that is at best, may I say, questionable? It has been shown that patient data at individual level has been shared, and we know with researchers for sure. They are not my clinicians, they are not the only third party who may have access. It’s clearly documented by CAG and releases by DAAG from 2013 have just been released in detail for the first time today.

Through the campaign groups’ and ICO intervention that demanded a national communications programme and the subsequent ICO FOI release about the leaflet review and its shortcomings, we go a significant step forwards towards transparency why the leaflet failed to work for patients. It shows that all the issues we found after the event; junk mail vs letter, hard to reach groups, unclear language, missing opt out form, lack of internal communication and the Information Commissioner’s concerns were clearly known but ignored in advance. Why it happened, who made the decision to go ahead anyway and what follow up will be, remains to be seen. With all the past experience and tools at the disposal of NHS England it is stretching my credulity to believe it was simply poorly executed. Let’s not forget, the original plan was to not tell us at all.

We need to stop hearing we need a fix to communications. I’m trying to understand why, with everything at their disposal, they could want or have allowed to let such a thing happen? It was no surprise the leaflet drop was a disaster. HSCIC communications, leaders and now it seems the Department of Health knew clearly. So why go ahead?

The point of the communication should have been to give us fair processing and the leaflet said, ‘you have a choice.’ I have a duty to my children to safeguard their own health, its provision in a safe State health service and to safeguard their autonomy for future. As it stands, it seems an impossibility to choose all three.

Whilst the leaflet nominally gives us a choice, I struggle to see what value it is. It is some, but limited. The only choice we have truly, is before the extraction happens. A GP in Hampshire devised this flow chart to try to help his patients understand it. Anyone can object now and opt in later. But once opted in, there is no get out clause.

If I don’t opt my children out now, they are in for life whether they later want to exercise their Right to be be Forgotton, or not. If I change my mind later and want to opt out (after a media scandal huge breach, for example. Or perhaps my child grows to become a public figure, or contracts a rare condition and we worry about discrimination), it is impossible. Records will just be re-labelled as pseudonymous. Really?

So, if I share their data for secondary purposes by doing nothing, by allowing their data sharing with even health purposed non-NHS intermediaries who sign up to care.data, it feels like I may as well flog it on ebay myself. But although I want to share it, under good governance only for their care and its commissioning, that is impossible.

Surely we should be able to have their health records used only for their care and its direct management, in all forms? Pseudonymous is not anonymous. But we’ve been given a very limited choice. We can only restrict fully ‘identifiable’ data flows according to the leaflet.
The data that HSCIC already holds, is simply given a new label, the HES ID instead of my NHS number, and linked depending on the bespoke request design, I don’t know what else modified, and then exchanged for cash with buyers from commercial health analysts to medical researchers to intermediaries. Amendment to the Care Bill changes nothing, because as long as ‘health purposes’ are served, the customers are deemed acceptable.

What real kind of patient choice is that? Is my hospital data in pseudonymous, potentially re-identifiable form required from all, for all purposes, for all time whether I like it or not? They haven’t given us that choice in the only communication which we were meant to have received (but no one in my area did), the leaflet ‘Better information, means better care‘.

Right now, the only options are to restrict fully identifiable patient confidential data sharing. The leaflet says this means 1) you can restrict a flow between GP and HSCIC of the NHS Number, DOB, Postcode and Ethnicity, and/or 2) flowing out from the HSCIC, for anything other than commissioning to the regional DSCRO (One of 11 Data processing Centres at regional level). The second option also prevents researchers, even with Regulation 5, Section 251 approval, from obtaining red, fully identifiable data.

However, the objection code is not yet operational, so right now, our fully identifiable hospital data may be released without our knowledge or consent. Other data, considered non-personal, diagnoses, GP practice code, other local IDs from our records can still be shared. And according to September meeting minutes, there is no need to respect an objection for pseudonymous data.

To restrict identifiable flow for care.data from the GP record, we need to apply the code 9Nu0 to our record. 9Nu4 restricts the identifiable HES data flow. But NHS number is extracted with anonymous and aggregated data to identify who opts out. Since that must be matched with HES data to find the record we want restricted already at HSCIC, I don’t see how that can  work without landing, matching and being pseudonymised for all of us. I await to be corrected.

We cannot restrict pseudonymous, potentially identifiable data sharing from HES at all. Patients were not told us before HES was extracted, that it would have all these secondary uses, and now they tell us, tough luck? Without fair processing, it’s not even legal. The Health and Social Care Act, the Secretary of State’s direction of Section 251, and waiving the common law of confidentiality all still require us to be informed before the event.

There is no clarity on the options offered in the leaflet or mention of sharing pseudonymous data even if you opt out. That is not choice. The only publicly loud supporters of real choice are campaigners who provided an opt out form, that official channels still have not.

Six weeks into the six month pause, there has been no public communication to give us any clue what is going on to improve the situation, neither by NHS England nor the Secretary of State for Health.  This is not good communication. And knowing that many parents, including friends, have no idea about the initiative I just feel this is wrong.

I’ve written to my MP for the second time. I found in the whirlwind of information and my frustration, that Twitter #caredata and #datasharing offers an informed group of interested individuals. Thank goodness for their support, insights & banter in this tumultuous journey trying to understand what is going on. Until the ‘pause’, HSCIC and NHS England staff would engage and answer questions, too. Now they seem to have gone very quiet.

Like Dorothy, after seeing behind the curtain of how political and state decisions are made and executed, I have been surprised that so much happens ‘about us, without us,’ and will now never be quite as naive. We all deserve the full story, as patients and citizens. According to Jeremy Hunt at frequent presentations, and Tim Kelsey at Strata and other events, we are on the cusp of a brave new world of health data use and its wide ranging impact in our future healthcare provision of personalised medicine. If they expect to use me in that, I want to know how. So right now, there is no way I’m going home, until we know how the story ends.

Now, all this is not very constructive. Not like me at all. But what is past cannot be brushed away without clear answers. That would effectively say, ‘we don’t care we wasted your state money. We don’t care we misled you. We don’t care what you think.’ Get out the broomstick and clear up what went wrong and why. Then we can start fresh and see if together we can find solutions which fit the needs.

We are more than a cohort, and we are not a commodity. We need change.

If we should be Cameron’s ‘willing research patients’, then tell us precisely what that involves. Give me a definition with a limited scope. I support appropriate research use. Aside from the fact that we didn’t know about this either, research approved by CPRD, Thin, QResearch all have a different approach however, from the commercial and apparently limitless dynamic of care.data. It is quite one thing for researchers to access data and contact us for trials. Quite another to find without our knowledge our data may have been exchanged for cash and I want to know it has not been used in research abroad nor with projects with which my ethics may fundamentally disagree.

Data is not just a collection of codes and academic algorithims. It is the detailed knowledge of the inner workings of our mind, bodies and lifestyle which we entrusted to our medical guardians. Of individual people who did not ask nor sign up to become part of Big Data.Treat my children’s data with the respect that it deserves.

No number of animations, leaflets or letters with ‘improved communication’ is going to gloss over the fundamental fixes needed in handling patient data. Show us the flaw and what you have done to fix it. Along the lines of, ‘you said’, ‘we did’. Real communication.

And if you do decide to give us real choice, then make it statutory for life. Choice will only be worth having if we know that what we choose today, does not get transformed into something else tomorrow. It needs more than a magic wand to wave away the issues. Let’s hope the new care.data advisory group, can make it happen.

#caredata, choice, communications, Tech, transparency

care.data – 1. A mother’s journey in Oz: transparency.

1939 The wizard of Oz MGM

David Aaronovitch’s Times’ article on March 27th stated data privacy fears have made health-data sharing “toxic” and that campaigners are nothing but a ‘man with a megaphone’, like the Wizard of Oz.

Mr. Aaronovitch chose the perfect fairy tale, but like Dorothy, it landed the wrong way round.

It is long overdue that the curtain of secrecy, behind which the mechanics of the Health and Social Care Information Centre has operated, was finally pulled away. Our medical records shared and sold for over 25 years? We had no idea, yet now find out with whom and how it has been used only though the campaigners. 

The group the article described as ‘not speaking for most of us’, MedConfidential, has in fact spoken with support from leading figures across a wide range of professional organisations, including before the Health Select Committee alongside the Chair of the BMA GP Committee on Feb 25th.  They have spoken about patient choice and fair processing, technical security issues and good governance to get the care.data scheme right, and secure a good future foundation on which to build safe & trusted patient data practices.

I should think ‘not most of us’, but in fact all of us, want to get these things right. These things need to be right, in order for the informed public to support the system. Not just come autumn, but for life. Otherwise they risk revolt and more than just this system, will lose support.

Yet six weeks into the six month delay, we see no publicly communicated changes.

The toxic ‘smoke and mirrors’ lack of transparency to date must change, this scheme is too important to hide away and get wrong. This sort of attitude is precisely why it has repeatedly cost the country billions in failed IT programmes over 10 years whether at the MOD, BBC or Department of Health. The NPfIT via the now named HSCIC, continue making the same mistakes at arms-length from the DH and whilst refusing to apologise, projects carry on regardless, wasting money, time, public and professional trust.

Kingsley Manning, Chair of HSCIC said last week, “One of our key measures of success might have been that we were safely below the radar of public attention.” He may as well have said, “Pay no attention to the man behind the curtain!”

He stated an “innocent lack of transparency” has fuelled suspicion that arrangements for organisations’ use of data were “unfairly tipped in favour of profit making”. Perhaps it’s rather the HSCIC 2013-15 Roadmap which gives us fact, not suspicion. By 2015 HSCIC  would ‘agree a plan for addressing the barriers to entry into the market for new commercial ventures’ using our data provided by the HSCIC and:

“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.”

Working with care.data is promised as a sweetener to commercial business, to ‘innovators of all kinds’  including Google for unproven State economic development and gain. Why should any commercial monkeys, even under the wings of ‘healthcare purposes’, carry off a piece of our most intimate personal data without asking our permission, when we go for healthcare at our most vulnerable and trusting?

Thank goodness for the privacy campaigners, the Freedom of Information requestors, the experts and professionals who altruistically take the time and trouble to champion the patient and public interest. Otherwise, we would not have been informed at all of plans.

The rights of fair processing and Data Protection appear to be trampled upon in the rush to implement the increased sharing of pseudonymous data, which is not anonymous yet not protected.

MedConfidential offers a simple method to enable the opt outof identifiable data flows which NHS England did not do. A right to objection was offered by the Secretary of State for Health and would be upheld as, ‘a constitutional rather than legal right.’ The Commissioning Board NHS England’s unclear leaflet wording and no form compared with the SCR opt out makes the intent of the process hard to understand.

We need honesty, clarity and communication, not PR. Transparency is fundamental to a renewal of trust across these areas.

Don’t tell us one thing and say another to business and government. Talk to us without spin. Give us clarity of purpose, choice, good independent governance, defined scope and an ongoing communications plan. Let me understand why you need fully identifiable data and how it will be used by whom and how you will protect pseudonymous, re-identifiable records. Don’t appear to use technicalities to get what you want. Not only must our data protection be legal, but be seen to be legally appropriate. Listen to the informed critics. Ensure ethics champion commercial decision making. Address the risks as well as the benefits and tell us your forward plans. Then perhaps, you will have paved the pathway to properly use our world class data in the world class NHS, for the public good.

Oh, and please get rid of the monkeys.