Tag Archives: data sharing

#caredata, care.data, communications, NHSEngland, trust

care.data communications and core concepts [Part one]

“My concerns about care.data are heightened, not allayed by the NHS England apparently relentless roll-out and focus on communications. Whilst they say it will take as long as it needs, there is doublespeak talk of Oct-Nov. pilots. It is still all about finding the right communications, not fixing flaws in core concepts.”

Today at the Health Select Committee Mr. Tim Kelsey, on behalf of NHS England, said that care.data pilots will be in October/ November and in the meantime they are listening to the “constructive challenge to NHS England how to build trust in the [care.data] programme.”

Here’s my real experience of that listening, why it may not help and what still needs done. (And in under 4 months if in time to be of any use for the pathfinder pilots, which are only of use to the whole if done properly. )

[Part one]  care.data communications and core concepts – Ten takeaways from the Open House event.

The NHS England led Open House Day [1] on June 17th was a listening opportunity according to the draft agenda for:

“patients and the public to influence the work of NHS England at national and regional level.”

Here are some of the things I learned:

1. Public Awareness

Mr.Kelsey asked the room (he was in London, other locations took part by live link) how many have:

a) heard of care (dot) data and

b) how many think they understand what it is is?

We couldn’t see his room, but he said ‘about half’ understood it. Our room’s show of hands was similar.

My reaction: One would expect everyone attending to have heard of it, the event after all was billed as in part about care.data. The level of understanding should be higher than the average in the public, since many (in Basingstoke at least) were NHS England or more involved than the average citizen.

Feedback overall was consistent with the latest MORI Ipsos poll [2] commissioned by the Joseph Rowntree Reform Trust in which the minority know it well and over 50% say they have never heard of it. That’ s a long way to go to reach people, inform them adequately to meet legal Data Protection minimums and let them enact their patient choice.

ipsosmori_q4know

2. Communications Message & Scope

A consistent, frequent communications message is that ” there are FAQs and materials, we have the answers, we just need to communicate them better.”

My response: communication is failing because the core scope of what care.data is, is fluid. Without something concrete and limited, it cannot be explained neatly. As one NHS England communications member of staff said to me this week, ‘we haven’t got an elevator pitch.’  So it’s not about the materials or the methods, it’s the substance that is flawed. When you’re talking about extracting, storing, sharing and selling some of our most intimate information, a vague notion of pooled experience is not good enough to trust. People want to know exactly what information, is being shared for what purpose, with whom, where. And how long will they keep it for?  NHS England simply do not have the answers to that, so, that elevator pitch? It’s never going to get off the ground in a meaningful way. And anything less than the answers to those questions, doesn’t meet the Fair Processing requirement of Data Protection Law.

Today at the Health Select Committee Mr.Kelsey was asked, will patients be able to trace in future where their data went? There was a rare and stunning silence. And after a benefits statement, there was still no answer given to the question. [update: Hansard now available, Q525/526]

Scope cannot be fluid and changing – the use of our personal information that we sign up to today, must stay what we agreed to tomorrow.

Data Protection requires that the minimum data is extracted so this ever increasing scope creep, but only *one* chance at opt out are at odds with each other.  What plans are in place to meet Data Protection fair processing EVERY time new things should be added and more data could be extracted? It’s a legal necessity. An ongoing change communications process MUST be in place.

3. Timing

Mr. Kelsey said, on rollout timing that NHS England would take it  ‘as slowly as we need to.’

My response: This reiterates the ‘no artificial deadlines’ but appears to be doublethink in contrast with the statement confirming  ‘autumn 2014’ extraction for Pathfinder (pilot) 100-500 practices. How will the pathfinder (pilot) locations be ready to test a communications process which as yet does not exist? How will it pilot a consent process for young people, the vulnerable, those with complex health system needs, the at risk, those outside ‘the system’ with GP records? A process which by its nature must be applied to any opt in or opt out choice, if others make a decision on their behalf yet from the meetings’ discussion, whose informed consent appears not even begun to be considered?  Or how will solutions to past Data protection Law failings be found from thin air, when data has been breached in the past, continues to be shared in the present and there is no solution to resolving those failings for the future?

4. Language simplification

There is a tendency to oversimplify the language of the Care Act, into ‘care.data will not be used for any purpose other than ‘health benefit’ – whereas benefit is not mentioned in the wording:

Care Act 2014My response: Is to question why this is? Does benefit sound better than promotion perhaps? Again, words should be used accurately.

5. Users simplification of the Care.Act wording

The actual wording is ‘the promotion of health’.

NHS England are similarly very keen to point out explicitly that care.data  cannot possibly be used for insurance or marketing purposes, such as junk mail.

My response:  Yet again, the wording of the Care Act does not state this explicitly. In fact, it leaves pharmaceutical marketing for example, quite open, ‘for the promotion of health’. And there is no legal barrier in the Care Act per se, for firms which receive data for one purpose, such as BUPA the hospital provider in London, using it for another, such as BUPA as refining premiums. BUPA Health Dialog received individual level patient data in the past. How do those patients know what it was then used for or shared with? Perhaps Data Sharing Agreements can specify this, but the Care Act, does not.

Claims to rule out “solely commercial” can’t be backed up by the wording of the Act. Will “the promotion of health” still permit uses such as marketing by pharmacies or ‘healthy eating’ campaigns from big food chains?  There is no obvious definition – and leaves wide interpretation open.

When Sir Manning spoke at the Health Select Committee he (rightly) said HSCIC can only restrict and determine what they do ‘within the law’. The law needs to be tight if the purposes are to be tight. Loose law, loose uses.

6. Use by Data Intermediaries to continue

care.data will continue to be on offer to third party Data Intermediaries it was confirmed in the panel Q&A.

My response: some third party intermediaries in part perform outsourced data services for the NHS. But do they also use the data within their own business to inform their business intelligence markets? They sell knowledge gleaned from raw data onwards,  or have commercial re-use licenses for raw data over which we in the public have no visibility or transparency.  We cannot see within these businesses how they build their own ‘Chinese walls’, self-imposed restrictions to ensure security between different parts of the same umbrella organisation. Allowing third parties to re-sell data means control over its use, owners and management is lost forever. Not secure, transparent or trustworthy. I explore their uses with commercial brokers more here in a previous post. [3] Considering I was told that my personal confidential data will not be shared with third parties, in a letter signed by the Secretary of State for Health, I am most unhappy about this. I will find it hard to trust new statements of best intent, without legislation to govern them.

7. Data Lab – restricting user access

Mr. Kelsey indicated that going forward the default access to our health data will be on the premises of HSCIC, the so called “Fume cupboard” or “Data Lab.” However he noted, this would not be for all, but be the ‘default’.

”The default will be access it on the premises of the IC. That won’t be universal for all organisations….”

My questions: Whilst a big improvement from giving away chunks of raw data via CD or to remote users, these processes need documented and publicly communicated for us to trust they will work. When will it be built and operational? How will we know who all the end users are if the same rules do not apply to all? How will those exceptions be granted? Documented? Audited? Will raw data extraction still be permitted? It’s the exceptions which cause issues and in future, the processes and how they are seen to be governed must be whiter than white. For those with direct access, users of the HDIS or HES, will a transparent list of users be published? At least for now, they do not show up on extraction audits so the public cannot see what those users access or why. So, a good step, but can’t stand alone.

Until this secure data lab is physically built, any data extracted cannot go into it. That won’t happen by October/November I should think. So will NHS England be prepared to extract data anyway, into a setting they *know* is LESS secure and a NOT yet a safe setting?

8. Governance

We were informed, an Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, has agreed to advise the care.data Programme Board to evaluate the first phase pathfinder (pilot) stage.

My feedback: I find this interesting not least because the Information Governance Review [4] under her direction in March 2013 decided that commissioning purposes were insufficient reason to extract identifiable data. Personal confidential data should only be disclosed with consent or under statute and “while the public interest can also provide a legal basis for disclosure it should not be relied upon for routine data flows. [footnote, p.63]”

What value is Independent Governance if it has no legislative teeth and can only advise? At the Health Select Committee today, he said she would be able to offer a view, and a number of parties will be able to express views & be ‘in agreement’. But I wonder who owns the ultimate final go/ no-go decision whether the pilot should progress to full roll-out?

9. Anonymous Sounds Safer

Feedback on the handout: The care.data notes need not only to be accurate but transparently truthful.

In my opinion, words are again misused words to indicate that data is anonymous. 1706204_datauses Whilst the intention of the merged CES output (GP records combined with HES files) may be that some users will see only pseudonymous data, the extracted and stored data is identifiable unless opted out. Name is held in the Personal Demographics Service. [5] This is one of the key communications messages I have taken up with HSCIC, NHS England, raised to the DH through my MP. To reassure the public by saying name is not stored, is deliberately deceptive unless it states simultaneously that it may already be held in the PDS and/or linked on demand.[6]

1706datauses

The Partridge Review [7] has dispensed with the notion that data is anonymous once and for all. Now it must be managed accordingly as identifiable data within Data Protection law and communications must stop misusing the anonymous concept to reassure the public.

“It’s a beautiful thing, the destruction of words.”                                 ( George Orwell, 1984)

10. My own experience of engagement

The most interesting part of the day for me personally however, were the discussions which were unstructured and when we were free to talk amongst ourselves. Unfortunately, that was very little. The structure (at least in Basingstoke and appeared similar on screens elsewhere) was based around tables of about 10 which included at least two NHS England staff at each.

At the end of the morning session, before lunch, as the other participants had left the table, a Communications person and I got into conversation on the differences between care.data, the Summary care Record (SCR) and where Patient Online was to fit in our understanding of which data was used for which purpose.

We discussed that since care.data is only monthly retrospective extracts, not for real-time record access, it would not be a suitable basis for Patient Online access – care.data is for secondary uses. So, we moved onto the challenges of SCR access at local level and how it will be possible to offer everyone Patient online when so many have opted out of the Summary Care Record. We began to talk stats of SCR availability and actual use in hospitals.[8]

Sadly, the table facilitator appeared to decide at that point, that our discussion needed guidance and rushed to fetch a senior member of staff from Strategic systems. And rather than engaging me in what had been a very positive, pleasant two-way conversation, with the Comms person asking me questions and our exchange of views, the Strategic Head took over the conversation with her NHSE team member, effectively restricting further discussion, even with her body positioning and language. Being informed is OK, as long as its the ‘right’ information?

I don’t think that’s what patient engagement is about. The subject needs real, hard discussion, not just managed exchange using pre-designed template cards of topics that we are told we ‘should’ discuss. Perhaps ignorance is strength, but in my opinion, keeping Communications staff informed only ‘on message’ and not of the wider facts and concerns is shortsighted and does them, and patients, a disservice, but then again:

“If you want to keep a secret, you must also hide it from yourself.” (George Orwell, 1984)

For [Part two] care.data communications and core concepts – Questions, Communications and Actions : link here >>

*****

[1] The NHS England Open House recording June 17th http://www.nhsengland-openhouse.public-i.tv/core/portal/NHSopenhouse

[2] IPSOS Mori poll conducted for the Joseph Rowntree Foundation: http://www.ipsos-mori.com/Assets/Docs/Polls/jrrt-privacy-topline-nhs-2014.pdf

[3] My post on uses of our records with commercial Data Brokers – https://jenpersson.com/flagship-care-data-2-commercial-practice/

[4] The Information Governance Review ‘Caldicott 2‘ https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

[5] The Personal demographics Service at HSCIC (including name) http://systems.hscic.gov.uk/demographics/pds/contents

[6] The Data Linkage Service at HSCIC http://www.hscic.gov.uk/dles

[7] The Partridge review: http://www.hscic.gov.uk/datareview

[8] Summary Care Record use statistics https://www.whatdotheyknow.com/request/scr_care_settings_with_viewing_c#incoming-446569

***

Fun fact: George Orwell’s Nineteen Eighty-Four is currently number 5 in the UK Classics Fiction Amazon ranking. And 86th in fiction overall. Sales up over 5,000% in the US since the Snowden revelations, a year ago.

MORE BACKGROUND ON THE EVENT:

Within the other programmes of Patient Online and Patient Participation, care.data was a one hour session. It included the blue plasticine people short animation, a speech by Mr.Kelsey, a 15 minute table discussion on one pre-given theme from a range of four, reading aloud the summary of that discussion from each table within the room, one question per venue raised outside the room to the panel via video link in London, and their answers. Our discussion topics were brief, controlled and relatively superficial. It could have been a productive day’s workshop on only that.

The Open House  took place simultaneously in four venues across England, Basingstoke, Leicester, York and London, connected through a live videolink at a number of points throughout the day. The recording in part, can be viewed here.

I attended the Basingstoke event, particularly keen to learn about national programmes such as care.data and hear about any updated plans for its rollout, to learn about patient online, and to meet the NHS England team in the South as well as other interested people like me. I hoped for some real public discussion and to hear others get their questions aired, shared and on the table for resolution.

I met one other ‘only’ patient and whilst I was kindly told by a further active PPG organiser, that I should never refer to myself as ‘only’ a patient, but you know what I mean. I’ve applied as a lay rep on our local CCG for an opening next year, until then, I’m learning as much as I can from others. Other attendees I met were those already more closely involved with NHS England in some way already. As NHS England staff, facilitators, representatives from Clinical Commissioning Groups, Patient Leaders and PPG leaders.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

caredatatimeline

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[3] care.data addendum Sept 2013

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

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

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

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

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

[8] HSCIC 2013-15 Roadmap

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

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

[11] The HSCIC Data Linkage price list

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

[13] Data Protection Standards – retention, principle 5

[14] care.data programme overview April 2013

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

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

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

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

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