Tag Archives: #caredata

Building Public Trust in care.data sharing [1]: Seven step summary to a new approach

Here’s my opinion after taking part in the NIB #health2020 Bristol event 24/7/2015 and presentation of plans at the June King’s Fund hosted event. Data sharing includes plans for extraction and uses of primary care data by third parties, charging ahead under the care.data banner.

Wearing my hat from a previous role in change management and communications, I share my thoughts in the hope the current approach can adapt and benefit from outside perspectives.

The aim of “Rebuilding and sustaining Public trust” [1] needs refocused to treat the cause, not only the symptoms of the damage done in 2014.  Here’s why:

A Seven Step Top Line Summary

1. Abstract ‘public trust’ is not vital to the future of data sharing. Being demonstrably worthy of public trust is.

2. Data-sharing is not vital to future-proof the NHS. Using knowledge wisely is.

3. A timed target to ‘get the public’s data’, is not what is needed. Having a stable, long term future-proofed and governable model is.

4. Tech solutions do not create trust. Enable the positive human response to what the org wants from people, enabling their confident ‘yes to data-sharing.’ [It might be supported by technology-based tools.]

5. Communications that tell the public ‘we know best, trust us’ fail.  While professional bodies [BMA [2], GPES advisory group, APPG report calling for a public benefits plan, ICO, and expert advice such as Caldicott] are ignored or remain to be acted upon, it remains challenging for the public to see how the programme’s needs, motives and methods are trustworthy. The [Caldicott 2] Review Panel found that commissioners do not need dispensation from confidentiality, human rights & data protection law.” [3] Something’s gotta give. What will it be?

6. care.data consistency. Relationships must be reliable and have integrity.
“Trust us – see the benefits” [But we won’t share the business cost/benefit plan.]
“Trust us – we’re transparent” [But there is nothing published in 2015 at all from the programme board minutes] [4]
“Trust us – we’ll only use your data wisely, with the patient in control” [Ignore that we didn’t before [5] and that we still share your data for secondary uses even if you opted out [6] and no, we can’t tell you when it will be fixed…]

7. Voices do not exist in a vacuum. Being trustworthy on care.data  does not stand alone but is part of the NHS ‘big picture’.
Department of Health to GPs: “Trust us about data sharing.’  [And ignore that we haven’t respected many of  your judgement or opinions.]
NHS England to GPs: “Trust us about data sharing.’  
[And ignore our lack of general GP support: MPIG withdrawal, misrepresentation in CQC reports] NHS England and Department of Health to professionals and public: “The NHS is safe in our hands.’ Everyone: “We see no evidence that plans for cost savings, 7 day working, closures and the 5YFV integration will bring the promised benefits. Let us ‘see the holes’, so that we can trust you based on evidence.”

See the differences?

Target the cause not Symptom:

The focus in the first half, the language used by NHS England/NIB/ DH, sets out their expectations of the public. “You must trust us and how you give us your data.”

The focus should instead to be on the second half, a shift to the organisation, the NHS England/NIB/ DH, and set out expectations from the public point-of-view. ” Enable the public to trust the organisation. Enable individual citizens to trust what is said by individual leaders. This will enable citizens to be consensual sharers in the activity your organisation imposes – the demand for care.data through a statutory gateway, obliging GPs to disclose patient data.

The fact that trust is broken, and specifically to data-sharing that there is the deficit [A] between how much the public trusts the organisation and how the organisation handles data, is not the fault of the public, or “1.4 M NHS staff”, or the media, or patient groups’ pressure. It’s based on proven experience.

It’s based on how organisations have handled data in the past. [5] Specifically on the decisions made by DH, and the Information Centre and leaders in between. Those who chose to sell patient data without asking the public.

The fact that trust is broken is based on how leadership individuals in those organisations have responded to that. Often taking no responsibility for loss.

No matter how often we hear “commissioners will get a better joined up picture of care needs and benefit you”, it does not compensate for past failings.

Only demonstrable actions to show why it will not happen in future can start that healing process.

Target the timing to the solution, not a shipping deadline

“Building trust to enable data sharing” aims at quick fixes, when what is needed is a healing process and ongoing relationship maintenance.

Timing has to be tailored to what needs done, not an ‘artificial deadline’. Despite that being said it doesn’t seem to match reality.

Addressing the Symptoms and not the Cause, will not find a Cure

What needs done?

Lack of public trust, the data trust deficit [A] are symptoms in the public to be understood. But it is the causes in the organisations that must be treated.

So far many NHS England staff I have met in relation to care.data, appear to have a “them and us” mentality. It’s almost tangibly wrapped up in the language used at these meetings or in defensive derision of public concerns: “Tin foil hat wearers”, “Luddites” [7] and my personal favourite, ‘Consent fetishists.’ [8] It’s counter productive and seems borne from either a lack of understanding, or frustration.

The NIB/DH/NHS England/ P&I Directorate must accept they cannot force any consensual change in an emotion-based belief based on past experiences, held by the public.

Those people each have different starting points of knowledge and beliefs.  As one attendee said, “There is no single patient replicated 60 million times.”

The NIB/DH/NHS England/ P&I Directorate can only change what they themselves can control. They have to model and be seen to model change that is trustworthy.

How can an organisation demonstrate it is trustworthy?

This means shifting the focus of the responsibility for change from public and professionals, to leadership organisation.

There is a start in this work stream, but there is little new that is concrete.

The National Data Guardian (NDG) role has been going to be put on a legal footing “at the earliest opportunity” since November 2014. [9] Nine months.

Updated information governance guidance is on the way.

Then there’s two really strong new items that would underpin public trust, to be planned in a ‘roadmap’: the first a system that can record and share consent decisions and the second, to provide information on the use to which an individual’s data has been put.

How and when those two keystones to public trust will be actually offered appear unknown. They will  encourage public trust by enabling choice and control of our data. So I would ask, if we’re not there yet on the roadmap, how can consent options be explained to the public in care.data communications, if there is as yet no mechanism to record and effect them? More on that later.

Secondly, when will a usage report be available? That will be the proof to demonstrate that what was offered, was honoured. It is one of the few tools the organisation(s) can offer to demonstrate they are trustworthy: you said, we did. So again, why jeopardise public trust by rolling out data extractions into the existing, less trustworthy environment?

How well this is done will determine whether it can realise its hoped for benefits. How the driving leadership influences that outcome, will be about the organisational approach to opt out, communicating care.data content decisions, the way and the channels in which they are communicated, accepting what has not worked to date and planning long-term approaches to communicating change before you start the pathfinders. [Detailed steps on this follows.]

Considering the programme’s importance we have been told, it’s vital to get right. [10]

i believe changing the approach from explaining benefits and focus on public trust, to demonstrating why the public should trust demonstrable changes made, will make all the difference.

So before rolling out next data sharing steps think hard what the possible benefits and risks will be, versus waiting for a better environment to do it in.

Conclusion: Trust is not about the public. Public trust is about the organisation being trustworthy. Over to you, orgs.

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To follow, for those interested in nitty gritty, some practical suggestions for progress in Building Public Trust in data sharing:

This is Part one: A seven step top line summary – What I’d like to see change addressing public trust in health data sharing for secondary purposes.

Part two: a New Approach is needed to understanding Public Trust For those interested in a detailed approach on Trust. What Practical and Policy steps influence trust. On Research and Commissioning. Trust is not homogeneous. Trust  is nuanced even within the single relationship between one individual and another. It doesn’t exist in a vacuum.

Part three: Know where you’re starting from. What behaviours influence trust. Fixing what has already been communicated is vital before new communications get rolled out. Vital to content of your communications and vital for public trust and credibility.

Part four: Communicate the Benefits won’t work – How Communications influence trust. For those interested in more in-depth reasons, I outline in part two why the communications approach is not working, why the focus on ‘benefits’ is wrong, and fixes.

Part five: Future solutions – why a new approach may work better for future trust – not to attempt to rebuild trust where there is now none, but strengthen what is already trusted and fix today’s flawed behaviours; honesty and reliability, that  are vital to future proofing trust

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Background References:

I’m passionate about people using technology to make their jobs and lives better, simpler, and about living well. So much so, that this became over 5000 words. To solve that, I’ve assumed a baseline knowledge and I will follow up with separate posts on why a new approach is needed to understanding “Public Trust”, to “Communicating the benefits” and “Being trustworthy and other future solutions”.

If this is all new, welcome, and I suggest you look over some of the past 18 months posts that include  public voice captured from eight care.data  events in 2014. care.data is about data sharing for secondary purposes not direct care.

[1] NHS England October 2014 http://www.england.nhs.uk/2014/10/23/nhs-leaders-vision/

[2] BMA LMC Vote 2014 http://bma.org.uk/news-views-analysis/news/2014/june/patients-medical-data-sacrosanct-declares–bma

[3] Caldicott Review 2: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf

[4] Missing Programme Board documents: 2015 and June-October 2014

[5] HSCIC Data release register

[6] Telegraph article on Type 2 opt out http://www.telegraph.co.uk/news/health/news/11655777/Nearly-1million-patients-could-be-having-confidential-data-shared-against-their-wishes.html

[7] Why Wanting a Better Care.Data is not Luddite: http://davidg-flatout.blogspot.co.uk/2014/04/why-wanting-better-caredata-is-not.html

[8] Talking to the public about using their data is crucial- David Walker, StatsLife http://www.statslife.org.uk/opinion/1316-talking-to-the-public-about-using-their-data-is-crucial

[9] Dame Fiona Caldicott appointed in new role as National Data Guardian

[10] Without care.data health service has no future says director http://www.computerweekly.com/news/2240216402/Without-Caredata-we-wont-have-a-health-service-for-much-longer-says-NHS

Polls of public feeling:

[A] Royal Statistical Society Data Trust Deficit http://www.statslife.org.uk/news/1672-new-rss-research-finds-data-trust-deficit-with-lessons-for-policymakers

(B] Dialogue on data – work carried out through the ADRN

 

 

care.data : the economic value of data versus the public interest?

 This is a repost of my opinion piece published in StatsLife in June 2015.

The majority of the public supports the concept of using data for public benefit.[1] But the measurable damage done in 2014 to the public’s trust in data sharing [2] and reasons for it, are an ongoing threat to its achievement.

Rebuilding trust and the public legitimacy of government data gathering could be a task for Sisyphus, given the media atmosphere clouded by the smoke and mirrors of state surveillance. As Mark Taylor, chair of the NHS’s Confidentiality Advisory Group wrote when he considered the tribulations of care.data [3] ‘…we need a much better developed understanding of ‘the public interest’ than is currently offered by law.’

So what can we do to improve this as pilot sites move forward and for other research? Can we consistently quantify the value of the public good and account for intangible concerns and risks alongside demonstrable benefits? Do we have a common understanding of how the public feels what is in its own best interests?

And how are shifting public and professional expectations to be reflected in the continued approach to accessing citizens’ data, with the social legitimacy upon which research depends?

Listening and lessons learned

Presented as an interval to engage the public and professionals, the 18 month long pause in care.data involved a number of ‘listening’ events. I attended several of these to hear what people were saying about the use of personal health data. The three biggest areas of concern raised frequently [4] were:

  • Commercial companies’ use and re-use of data
  • Lack of transparency and control over who was accessing data for what secondary purposes, and
  • Potential resulting harms: from data inaccuracy, loss of trust and confidentiality, and fear of discrimination.

It’s not the use of data per se that the majority of the public raises objection to. Indeed many people would object if health data were not used for research in the public interest. Objections were more about the approach to this in the past and in the future.

There is a common understanding of what bona fide research is, how it serves the public interest, and polls confirm a widespread acceptance of ‘reasonable’ research use of data. The HSCIC audit under Sir Nick Partridge [5] acknowledged that some past users or raw data sharing had not always met public expectations of what was ‘reasonable’. The new secure facility should provide a safe setting for managing this better, but open questions remain on governance and transparency.

As one question from a listening event succinctly put it [6]:

‘Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.’

Using the information gleaned from data was often seen as exploitation when used in segmenting the insurance markets, consumer market research or individual targeting. There is also concern, even outright hostility, to raw health data being directly sold, re-used or exchanged as a commodity – regardless whether this is packaged as ‘for profit’ or ‘covering administrative costs’.

Add to that, the inability to consent to, control or find out who uses individual level data and for what purpose, or to delete mistakes, and there is a widespread sense of disempowerment and loss of trust.

Quantifying the public perception of care.data’s value

While the pause was to explain the benefits of the care.data extraction, it actually seemed clear at meetings that people already understood the potential benefits. There is clear public benefit to be gained for example, from using data as a knowledge base, often by linking with other data to broaden scientific and social insights, generating public good.

What people were asking, was what new knowledge would be gained that isn’t gathered from non-identifiable data already? Perhaps more tangible, yet less discussed at care.data events, is the economic benefits for commissioning use by using data as business intelligence to inform decisions in financial planning and cost cutting.

There might be measurable economic public good from data, from outside interests who will make a profit by using data to create analytic tools. Some may even sell information back into the NHS as business insights.

Care.data is also to be an ‘accelerator’ for other projects [7]. But it is hard to find publicly available evidence to a) support the economic arguments for using primary care data in any future projects, and b) be able to compare them with the broader current and future needs of the NHS.

A useful analysis could find that potential personal benefits and the public good overlap, if the care.data business case were to be made available by NHS England in the public domain. In a time when the NHS budget is rarely out of the media it seems a no-brainer that this should be made open.

Feedback consistently shows that making money from data raises more concern over its uses. Who all future users might be remains open as the Care Act 2014 clause is broadly defined. Jamie Reed MP said in the debate [8]: ‘the new clause provides for entirely elastic definitions that, in practice, will have a limitless application.’

Unexpected uses and users of public data has created many of its historical problems. But has the potential future cost of ‘limitless’ applications been considered in the long term public interest? And what of the confidentiality costs [9]? The NHS’s own Privacy Impact Assessment on care.data says [10]:

‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.

Who has quantified the cost of that loss of confidence and have public and professional opinions been accounted for in any cost/benefit calculations? All these tangible and intangible factors should be measured in calculating its value in the public interest and ask, ‘what does the public want?’ It is after all, our data and our NHS.

Understanding shifting public expectations

‘The importance of building and maintaining trust and confidence among all stakeholder groups concerned – including researchers, institutions, ethical review boards and research participants – as a basis for effective data sharing cannot be overstated.’ – David Carr, policy adviser at the Wellcome Trust [11]

To rebuild trust in data sharing, individuals need the imbalance of power corrected, so they can control ‘their data’. The public was mostly unaware health records were being used for secondary purposes by third parties, before care.data. In February 2014, the secretary of state stepped in to confirm an opt-out will be offered, as promised by the prime minister in his 2010 ‘every patient a willing research patient’ speech.

So leaving aside the arguments for and against opt-in versus opt-out (and that for now it is not technically possible to apply the 700,000 opt-outs already made) the trouble is, it’s all or nothing. By not offering any differentiation between purposes, the public may feel forced to opt-out of secondary data sharing, denying all access to all their data even if they want to permit some uses and not others.

Defining and differentiating secondary uses and types of ‘research purposes’ could be key to rebuilding trust. The HSCIC can disseminate information ‘for the purposes of the provision of health care or adult social care, or the promotion of health’. This does not exclude commercial use. Cutting away commercial purposes which appear exploitative from purposes in the public interest could benefit the government, commerce and science if, as a result, more people would be willing to share their data.

This choice is what the public has asked for at care.data events, other research events [12] and in polls, but to date has yet to see any move towards. I feel strongly that the government cannot continue to ignore public opinion and assume its subjects are creators of data, willing to be exploited, without expecting further backlash. Should a citizen’s privacy become a commodity to put a price tag on if it is a basic human right?

One way to protect that right is to require an active opt-in to sharing. With ongoing renegotiation of public rights and data privacy at EU level, consent is no longer just a question best left ignored in the pandora’s box of ethics, as it has been for the last 25 years in hospital data secondary use. [13]

The public has a growing awareness, differing expectations, and different degrees of trust around data use by different users. Policy makers ignoring these expectations, risk continuing to build on a shaky foundation and jeopardise the future data sharing infrastructure. Profiting at the expense of public feeling and ethical good practice is an unsustainable status quo.

Investing in the public interest for future growth

The care.data pause has revealed differences between the thinking of government, the drivers of policy, the research community, ethics panels and the citizens of the country. This is not only about what value we place on our own data, but how we value it as a public good.

Projects that ignore the public voice, that ‘listen’ but do not act, risk their own success and by implication that of others. And with it they risk the public good they should create. A state which allows profit for private companies to harm the perception of good research practice sacrifices the long term public interest for short term gain. I go back to the words of Mark Taylor [3]:

‘The commitment must be an ongoing one to continue to consult with people, to continue to work to optimally protect both privacy and the public interest in the uses of health data. We need to use data but we need to use it in ways that people have reason to accept. Use ‘in the public interest’ must respect individual privacy. The current law of data protection, with its opposed concepts of ‘privacy’ and ‘public interest’, does not do enough to recognise the dependencies or promote the synergies between these concepts.’ 

The economic value of data, personal rights and the public interest are not opposed to one another, but have synergies and a co-dependency. The public voice from care.data listening could positively help shape a developing consensual model of data sharing if the broader lessons learned are built upon in an ongoing public dialogue. As Mark Taylor also said, ‘we need to do this better.’

*******

[1] according to various polls and opinions gathered from my own discussions and attendance at care.data events in 2014 [ refs: 2, 4. 6. 12]

[2] The data trust deficit, work by the Royal Statistical Society in 2014

[3] M Taylor, “Information Governance as a Force for Good? Lessons to be Learnt from Care.data”, (2014) 11:1 SCRIPTed 1 http://script-ed.org/?p=1377

[4] Communications and Change – blogpost http://jenpersson.com/care-data-communications-change/

[5] HSCIC audit under Sir Nick Partridge https://www.gov.uk/government/publications/review-of-data-releases-made-by-the-nhs-information-centre

[6] Listening events, NHS Open Day blogpost http://jenpersson.com/care-data-communications-core-concepts-part-two/

[7] Accelerator for projects mentioned include the 100K Genomics programme https://www.youtube.com/watch?v=s8HCbXsC4z8

[8] Hansard http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140311/debtext/140311-0002.htm

[9] Confidentiality Costs; StatsLife http://www.statslife.org.uk/opinion/1723-confidentiality-costs

[10] care.data privacy impact assessment Jan 2014 [newer version has not been publicly released] http://www.england.nhs.uk/wp-content/uploads/2014/01/pia-care-data.pdf

[11] Wellcome Trust http://blog.wellcome.ac.uk/2015/04/08/sharing-research-data-to-improve-public-health/

[12]  Dialogue on Data – Exploring the public’s views on using linked administrative data for research purposes: https://www.ipsos-mori.com/researchpublications/publications/1652/Dialogue-on-Data.aspx

[13] HSCIC Lessons Learned http://www.hscic.gov.uk/article/4780/HSCIC-learns-lessons-of-the-past-with-immediate-programme-for-change

The views expressed in this article originally published in the Opinion section of StatsLife are solely mine, the original author. These views and opinions do not necessarily represent those of The Royal Statistical Society.

Are care.data pilots heading for a breech delivery?

Call the midwife [if you can find one free, the underpaid overworked miracle workers that they are], the care.data ‘pathfinder’ pilots are on their way! [This is under a five minute read, so there should be time to get the hot water on – and make a cup of tea.]

I’d like to be able to say I’m looking forward to a happy new arrival, but I worry care.data is set for a breech birth. Is there still time to have it turned around? I’d like to say yes, but it might need help.

The pause appears to be over as the NHS England board delegated the final approval of directions to their Chair, Sir Malcolm Grant and Chief Executive, Simon Stevens, on Thursday May 28.

Directions from NHS England which will enable the HSCIC to proceed with their pathfinder pilots’ next stage of delivery.

“this is a programme in which we have invested a great deal, of time and thought in its development.” [Sir Malcolm Grant, May 28, 2015, NHS England Board meeting]

And yet. After years of work and planning, and a 16 month pause, as long as it takes for the gestation of a walrus, it appears the directions had flaws. Technical fixes are also needed before the plan could proceed to extract GP care.data and merge it with our hospital data at HSCIC.

And there’s lots of unknowns what this will deliver.**

Groundhog Day?

The public and MPs were surprised in 2014. They may be even more surprised if 2015 sees a repeat of the same again.

We have yet to hear case studies of who received data in the past and would now be no longer eligible. Commercial data intermediaries? Can still get data, the NHS Open Day was told. And they do, as the HSCIC DARS meeting minutes in 2015 confirm.

By the time the pilots launch, the objection must actually work, communications must include an opt out form and must clearly give the programme a name.

I hope that those lessons have been learned, but I fear they have not been. There is still lack of transparency. NHS England’s communications materials and May-Oct 2014 and any 2015 programme board minutes have not been published.

We have been here before.

Back to September 2013: the GPES Advisory Committee, the ICO and Dame Fiona Caldicott, as well as campaigners and individuals could see the issues in the patient leaflet and asked for fixes.The programme went ahead anyway in February 2014 and although foreseen, failed to deliver. [For some, quite literally.]

These voices aren’t critical for fun, they call for fixes to get it right.

I would suggest that all of the issues raised since April 2014, were broadly known in February 2014 before the pause began. From the public listening exercise,  the high level summary captures some issues raised by patients, but doesn’t address their range or depth.

Some of the difficult and unwanted  issues, are still there, still the same and still being ignored, at least in the public domain. [4]

A Healthy New Arrival?

How is the approach better now and what happens next to proceed?

“It seems a shame,” the Walrus said, “To play them such a trick, After we’ve brought them out so far, And made them trot so quick!” [Lewis Carroll]

When asked by a board member: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach? it wasn’t very clear. [full detail end of post]

First they must pass the tests asked of them by Dame Fiona [her criteria and 27 questions from before Christmas.] At least that was what the verbal background given at the board meeting explained.

If the pilots should be a dip in the water of how national rollouts will proceed, then they need to test not just for today, but at least for the known future of changing content scope and expanding users – who will pay for the communication materials’ costs each time?

If policy keeps pressing forward, will it not make these complications worse under pressure? There may be external pressure ahead as potential changes to EU data protection are expected this year as well, for which the pilot must be prepared and design in advance for the expectations of best practice.

Pushing out the pathfinder directions, before knowing the answers to these practical things and patient questions open for over 16 months, is surely backwards. A breech birth, with predictable complications.

If in Sir Malcolm Grant’s words:

“we would only do this  if we believed it was absolutely critical in the interests of patients.” [Malcom Grant, May 28, 2015, NHS England Board meeting]

then I’d like to see the critical interest of patients put first. Address the full range of patient questions from the ‘listening pause’.

In the rush to just fix the best of a bad job, we’ve not even asked are we even doing the right thing? Is the system designed to best support doctor patient needs especially with the integration “blurring the lines” that Simon Stevens seems set on.

If  focus is on the success of the programme and not the patient, consider this: there’s a real risk too many opt out due to these unknowns. And lack of real choice on how their data gets used. It could be done better to reduce that risk.

What’s the percentage of opt out that the programme deems a success to make it worthwhile?

In March 2014, at a London event, a GP told me all her patients who were opting out were the newspaper reading informed, white, middle class. She was worried that the data that would be included, would be misleading and unrepresentative of her practice in CCG decision making.

medConfidential has written a current status for pathfinder areas that make great sense to focus first on fixing care.data’s big post-election question the opt out that hasn’t been put into effect. Of course in February 2014 we had to choose between two opt outs -so how will that work for pathfinders?

In the public interest we need collectively to see this done well. Another mis-delivery will be fatal. “No artificial timelines?”

Right now, my expectations are that the result won’t be as cute as a baby walrus.

******

Notes from the NHS England Board Meeting, May 28, 2015:

TK said:  “These directions [1] relate only to the pathfinder programme and specify for the HSCIC what data we want to be extracted in the event that Dame Fiona, this board and the Secretary of State have given their approval for the extraction to proceed.

“We will be testing in this process a public opt out, a citizen’s right to opt out, which means that, and to be absolutely clear if someone does exercise their right to opt out, no clinical data will be extracted from their general practice,  just to make that point absolutely clearly.

“We have limited access to the data, should it be extracted at the end of the pathfinder phase, in the pathfinder context to just four organisations: NHS England, Public Health England, the HSCIC and CQC.”

“Those four organisations will only be able to access it for analytic purposes in a safe, a secure environment developed by the Information Centre [HSCIC], so there will be no third party hosting of the data that flows from the extraction.

“In the event that Dame Fiona, this board, the Secretary of State, the board of the Information Centre, are persuaded that there is merit in the data analysis that proceeds from the extraction, and that we’ve achieved an appropriate standard of what’s called fair processing, essentially have explained to people their rights, it may well be that we proceed to a programme of national rollout, in that case this board will have to agree a separate set of directions.”

“This is not signing off anything other than a process to test communications, and for a conditional approval on extracting data subject to the conditions I’ve just described.”

CD said: “This is new territory, precedent, this is something we have to get right, not only for the pathfinders but generically as well.”

“One of the consequences of having a pathfinder approach, is as Tim was describing, is that directions will change in the future. So if we are going to have a truly fair process , one of the things we have to get right, is that for the pathfinders, people understand that the set of data that is extracted and who can use it in the pathfinders, will both be a subset of, the data that is extracted and who can use it in the future. If we are going to be true to this fair process, we have to make sure in the pathfinders that we do that.

“For example, at the advisory group last week, is that in the communication going forward we have to make sure that we flag the fact there will be further directions, and they will be changed, that we are overt in saying, subject to what Fiona Caldicott decides, that process itself will be transparent.”

Questions from Board members:
Q: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach?
What are the top three objectives we seek to achieve?

TK: So, Dame Fiona has set a series of standards she expects the pathfinders to demonstrate, in supporting GPs to be able to discharge this rather complex communication responsibility, that they have under the law  in any case.

“On another level how we can demonstrate that people have adequately understood their right to opt out [..]

“and how do we make sure that populations who are relatively hard to reach, although listed with GPs, are also made aware of their opportunity to opt out.

Perhaps it may help if I forward this to the board, It is in the public domain. But I will forward the letter to the board.”

“So that lays out quite a number of specific tangible objectives that we then have to evaluate in light of the pathfinder experience. “

Chair: “this is a programme in which we have invested a great deal, of time and thought in its development, we would only do this  if we believed it was absolutely critical in the interests of patients, it was something that would give us the information the intelligence that we need to more finely attune our commissioning practice, but also to get real time intelligence about how patients lives are lived, how treatments work and how we can better provide for their care.

“I don’t think this is any longer a matter of huge controversy, but how do we sensitively attune ourselves to patient confidentiality.”

“I propose that […] you will approve in principle the directions before you and also delegate to the Chief Executive and to myself to do final approval on behalf of the board, once we have taken into account the comments from medConfidential and any other issues, but the substance will remain unchanged.”

******

[4] request for the release of June 2014 Open House feedback still to be published in the hope that the range and depth of public questions can be addressed.

care.data comms letter

******
“The time has come,” the walrus said, “to talk of many things.”
[From ‘The Walrus* and the Carpenter’ in Through the Looking-Glass by Lewis Carroll]

*A walrus has a gestation period of about 16 months.
The same amount of time which the pause in the care.data programme has taken to give birth to the pathfinder sites.

references:
[1] NHS England Directions to HSCIC: May 28 2015 – http://www.england.nhs.uk/wp-content/uploads/2015/05/item6-board-280515.pdf
[2] Notes from care.data advisory group meeting on 27th February 2015
[3] Patient questions: http://jenpersson.com/pathfinder/
[4] Letter from NHS England in response to request from September, and November 2014 to request that public questions be released and addressed

The Economic Value of Data vs the Public Good? [3] The value of public voice.

Demonstrable value of public research to the public good, while abstract, is a concept quite clearly understood.

Demonstrating the economic value of data for private consumer companies like major supermarkets is even easier to understand.

What is less obvious is the harm that the commercial misuse of data can do to the public’s perception of all research for the public good.[6]

The personal cost of consumer data exploitation, whether through the loss of, or through paid-for privacy, must be limited to reduce the perceived personal cost of the public good.

By reducing the personal cost, we increase the value of the perceived public benefit of sharing and overall public good.

The public good may mean many things: benefits from public health research like understanding how disease travels, or good financial planning, derived from knowing what needs communities have and what services to provide.

By reducing the private cost to individuals of the loss of control and privacy of our data, citizens will be more willing to share.

It will create more opportunity for data to be used in the public interest, for both economic and social gain.

As I outlined in the previous linked blog posts, consent [part 1] and privacy [part 2] would be wise investments for its growth.

So how are consumer businesses and the state taking this into account?

Where is the dialogue we need to keep expectations and practices aligned in a changing environment and legal framework?

Personalisation: the economic value of data for companies

Any projects under discussion or in progress without adequate public consultation and real involvement, that ignore public voice,  risk their own success and with it the public good they should create.

The same is true for commercial projects.  For example, back to Tesco.

Whether the clubcard data management and processing [8] is directly or indirectly connected to Tesco, its customer data are important to the supermarket chain and are valuable.

Former Tesco executive, spoke about that value in a 2013 interview:

“These are slow-growing industries,” Leahy said. “The difference was in the use of data, in the way Tesco learned about its customers. And from that, everything flowed.”[9]

By knowing who, how and when citizens shop, it allows them to target the sales offering to make people buy more or differently. The so-called ‘nudge’ moving citizens in the direction the company wants.

He explained how, through the Clubcard loyalty program, the supermarket was able to transition from mass marketing to personalized marketing and that it works in other areas too:

“You can already see in some areas where customers are content to be priced as customers: risk pricing with insurance and so on.

“It makes a lot of sense in health pricing, but there will be certain social policy restriction in terms of fair access and so on.”

NHS patient data and commercial supermarket data may be coming closer in their use than we might think.

Not only closer in their similar desire to move towards personalisation [10] but for similar reasons, in the desire to use all the data to know all about people as health consumers and from that, to plan and purchase, best and cheapest…”in reducing overall cost.”

It is worth thinking about in an economy driven by ideological austerity, how reducing overall cost will be applied, by cutting services or reducing to whom services are offered.

What ‘nudge’ may be applied through NHS policies, to move citizens in the direction the drivers in government or civil service want to see?

What will push those who can afford it, into private care and out of those who the state has to spend money on, if they are prepared to spend their own, for example.

What is the data that citizens provide through schemes like care.data designed to achieve?

“Demonstrating The Actual Economic Value of Data”

Tim Kelsey, speaking at Strata in 2013 [11] talked about: “Demonstrating The Actual Economic Value of Data”. Our NHS data are valuable in both economic and social terms.

[From 12:17] “It will help put the UK on the map in terms of genomic research. The PM has already committed to the UK developing 100K gene sequences very rapidly. But those sequences on their own will have very limited value without the reference data that lies out there in the real world of the NHS, the data we’ll start making available form next June […]. The name of the programme by the way is care dot data.”

The long since delayed care.data programme plans to provide medical records for secondary use, as reference data for the 100K genomics programme. The programme has the intent to “create a lasting legacy for patients, the NHS and the UK economy.”

With consent.

When the CEO of Illumina talks about winning a US $20bn market [12] perhaps it also sounds economically appealing for the UK plc and the austerity-lean NHS. Illumina is the company which won the contract for the Genomics England project sequencing of course.

“The notion here is that it’s really a precursor to understand the health economics of why sequencing helps improve healthcare, both in quality of outcome, and in reducing overall cost. Presuming we meet the objectives of this three-year study–and it’s truly a pilot–then the program will expand substantially and sequence many more people in the U.K.” [Jay Flatley, CEO]

The idea of it being a precursor leaves me asking, to what?
“Will expand substantially” to whom?

As more and more becomes possible in science, there will be an ever greater need for understanding between how and why we should advance medicine, and how to protect human dignity. Because it becomes possible may not always mean it should be done.

Article 21 of the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the application of biology and medicine, also says:  “The human body and its parts shall not, as such, give rise to financial gain.”

How close is profit making from DNA sequencing getting to that line?

These are questions that raise ethical questions and questions of social and economic value. The social legitimacy of these programmes will depend on trust. Trust based on no surprises.

Commercial market research or real research for the public good?

Meanwhile all consenting patients can in theory now choose to access their own record [GP online].  Mr Kelsey expressed hopes in 2013 that developers would use that to help patients:

“to mash it up with other data sources to get their local retailers to tell them about their purchasing habits [16:05] so they can mash it up with their health data.”

This despite the 67% of the public concerned around health data use by commercial companies.

So what were the commercially sensitive projects discussed by NHS England and Tesco throughout 2014? It would be interesting to know whether loyalty cards and mashing up our data was part of it – or did they discuss market segmentation, personalisation and health pricing? Will we hear the ‘Transparency Tsar‘ tell NHS citizens their engagement is valued, but in reality find the public is not involved?

To do so would risk another care.data style fiasco in other fields.

Who might any plans offer most value to – the customer, the company or the country plc? Will the Goliaths focus on short term profit or fair processing and future benefits?

In the long run, ignoring public voice won’t help the UK plc or the public interest.

A balanced and sustainable research future will not centre on a consumer pay-for-privacy basis, or commercial alliances, but on a robust ethical framework for the public good.

A public good which takes profit into account for private companies and the state, but not at the expense of public feeling and ethical good practice.

A public good which we can understand in terms of social, direct and indirect economic value.

While we strive for the economic and public good in scientific and medical advances we must also champion human dignity and values.

This dialogue needs to be continued.

“The commitment must be an ongoing one to continue to consult with people, to continue to work to optimally protect both privacy and the public interest in the uses of health data. We need to use data but we need to use it in ways that people have reason to accept. Use ‘in the public interest’ must respect individual privacy. The current law of data protection, with its opposed concepts of ‘privacy’ and ‘public interest’, does not do enough to recognise the dependencies or promote the synergies between these concepts.”

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

The public voice from care.data listening and beyond, could positively help shape the developing consensual model if given genuine adequate opportunity to do so in much needed dialogue.

As they say, every little helps.

****

Part one: The Economic Value of Data vs the Public Good? [1] Concerns and the cost of Consent

Part two: The Economic Value of Data vs the Public Good? [2] Pay-for-privacy and Defining Purposes.

Part three: The Economic Value of Data vs the Public Good? [3] The value of public voice.

****

[1] care.data listening event questions: http://jenpersson.com/pathfinder/

[2] Private Eye – on Tesco / NHS England commercial meetings https://twitter.com/medConfidential/status/593819474807148546

[3] HSCIC audit and programme for change www.hscic.gov.uk/article/4780/HSCIC-learns-lessons-of-the-past-with-immediate-programme-for-change

[4] EU data protection discussion http://www.digitalhealth.net/news/EHI/9934/eu-ministers-back-data-privacy-changes

[5] Joint statement on EU Data Protection proposals http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/WTP055584.pdf

[6] Ipsos MORI research with the Royal Statistical Society into the Trust deficit with lessons for policy makers https://www.ipsos-mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx

[7] AdExchanger Janaury 2015 http://adexchanger.com/data-driven-thinking/the-newest-asset-class-data/

[8] Tesco clubcard data sale http://jenpersson.com/public_data_in_private_hands/  / Computing 14.01.2015 – article by Sooraj Shah: http://www.computing.co.uk/ctg/feature/2390197/what-does-tescos-sale-of-dunnhumby-mean-for-its-data-strategy

[9] Direct Marketing 2013 http://www.dmnews.com/tesco-every-little-bit-of-customer-data-helps/article/317823/

[10] Personalisation in health data plans http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-002-Adult-Social-Care-Informatics.pdf

[11] Tim Kelsey Keynote speech at Strata November 2013 https://www.youtube.com/watch?v=s8HCbXsC4z8

[12] Forbes: Illumina CEO on the US$20bn DNA market http://www.forbes.com/sites/luketimmerman/2015/04/29/qa-with-jay-flatley-ceo-of-illumina-the-genomics-company-pursuing-a-20b-market/

Public data in private hands – should we know who manages our data?

When Tesco reportedly planned to sell off its data arm Dunnhumby [1] in January this year, it was a big deal.

Clubcard and the data which deliver customer insights – telling the company who we are, what we buy and how and when we shop using ‘billions of lines of code’ – will clearly continue to play a vital role in the supermarket customer relations strategy, whether its further processing and analysis is in-house or outsourced.

Assuming the business is sold,  clubcard shoppers might wonder who will then own their personal data, if not the shoppers themselves? Who is the data controller and processor? Who will inform customers of any change in its management?

“Dunnhumby has functioned as a standalone outfit in the past few years, offering customer information services to other retailers around the world, and could operate in a similar way for Tesco post-acquisition.”

I haven’t seen in the same media that the Dunnhumby speculation turned into a sale. At least not yet.

In contrast to the commercial company managing customer data for those who choose to take part, the company which manages the public’s data for many state owned services, was sold in December.

For an undisclosed value, Northgate Public Services [2] part of NIS was sold in Dec 2014 to Cinven, a European private equity firm.

What value I wondered does the company have of itself, or what value is viewed intrinsic to the data it works with – health screening, the National Joint Registry and more? It formerly managed HES data. What was part of the deal? Are the data part of the package?

Does the public have transparency of who manages our data?

Northgate has, according to their website, worked with public data, national and local government administrative data since 1969, including the development and management of the NNADC, “the mission critical solution providing continuous surveillance of the UK’s road network. The NADC is integrated with other databases, including the Police National Computer, and supports more than 3 million reads a day across the country.”

Northgate manages welfare support payments for many local authorities and the Welsh Assembly Government.

Data are entrusted to these third parties by the commercial or public body, largely without informing the public.

One could argue that a ‘named owner and processor’ is irrelevant to the public, which is probably true when things are done well.

But when things go wrong or are changed, should ‘the supplier’ of the data, or rather the public whose data it is, not be told?

If so, citizens would be informed and know who now accesses or even owns our public data that Northgate had in the past. Different firms will have different levels of experience, security measures and oversight of their practices than others. To understand how this works could be an opportunity for transparency to create trust.

Trust which is badly needed to ensure consensual data sharing continues.

So what will the future hold for these systems now owned by a private equity firm?

The buyer of Northgate Public Services, Cinven, has experience making a profit in healthcare.

We hear few details of plans available in the public domain about the NHS vision for data management and its future in public research.

We generally hear even less about the current management of the public’s data unless it is in a crisis, as front page stories will testify to over the last year. care.data has been in good company generating anger, with HMRC, the electoral register and other stories of legal, but unexpected data use of citizens’ data.

As a result we don’t know what of our public data is held by whom.

The latest news reported by the DM [3] will not be popular either given that 2/3rds of people asked in research into public trust over the governance of data [4] have concerns about public data in the hands of private firms:

Controversial plans to give private companies such as Google responsibility for storing people’s private personal health data could be revived, a minister has suggested.”

Could there ever be privatisation plans afoot for HSCIC?

It’s going to be interesting to see what happens next, whoever is making these decisions on our behalf after May 7th.

Certainly the roadmap, business plan, SIAM goals, and framework agreement [5] have given me cause to consider this before. The framework agreement specifically says change to its core functions or duties would require further primary legislation.”
[HSCIC DH framework agreement]

hscic_DH_framework

 

Changes to the HSCIC core remit, such as privatising the service, would require a change in legislation which would by default inform parliament.

Should there not be the same onus to inform the public whose data they are? Especially with “protection of patients being paramount”.  One could say protections should apply to our consumer data too.

Regardless of whether data are managed in-house or by another third party, by the state or commercial enterprise, if third parties can be outsourced or even sold, should consumers not always know who owns our data and of any changes in that guardianship?

Taking into account the public mistrust of commercial companies’ data management I would like to think so.

Further privatising the workings of our state data without involving the public in the process would certainly be a roadmap to driving public confidence on data sharing into the ground.

So too, when it comes to public trust, we might find when the commercial sale of consumer Clubcard data goes ahead, every little does not help.

****

Refs:

[1] Computing 14.01.2015 – article by Sooraj Shah: http://www.computing.co.uk/ctg/feature/2390197/what-does-tescos-sale-of-dunnhumby-mean-for-its-data-strategy

[2] Northgate sale to Cinven http://www.northgate-is.com/press-release-nps.html / http://www.northgatepublicservices.co.uk/

[3]  On the future of data handling http://www.dailymail.co.uk/news/article-3066758/Could-Google-look-NHS-data-Controversial-plans-revived-minister-says-technology-firms-best-placed-look-information-securely.html

[4] Ipsos MORI research with the Royal Statistical Society into the Trust deficit with lessons for policy makers https://www.ipsos-mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx

[5] HSCIC DH Framework agreement http://www.hscic.gov.uk/media/13866/Framework-Agreement-between-the-Department-of-Health-and-the-HSCIC/pdf/Framework_Agreement_between_the_Department_of_Health_and_the_Health_and_Social_Care_Information_Cent.pdf

The future of care.data in recent discussions

Questions were raised at two health events this week, on the status of the care.data programme.

The most recent NHS England announcement about the care.data rollout progress, was made in October 2014.

What’s the current status of Public Information?

The IIGOP review in December 2014 [1], set 27 criteria for the programme to address.

The public has not yet seen a response, but according to the GPES minutes one was made at the end of January.

Will it be released in the public domain?

An updated privacy impact assessment “was approved by the care.data programme board and will be published in February 2015.” It has not yet been made public.

Limited and redacted programme board materials were released and the public awaits to see if a business case or more will be released in the public interest.

Risks and issues have been redacted or not released at all, such as the risk register.

There is no business case in place, confirmed page 6 of the October 2014 board minutes – I find that astonishing.

It is hard to know if more material will be made public as recommended in their own transparency agenda.

What is the current state of open questions?

Professionals and public are still interested in the current plan, and discussions this week at the Roy Lilley chat with Dr. Sarah Wollaston MP, again raised some open questions.

1. What happened to penalties for misuse and ‘one strike and out’ ?

Promised  in Parliament by Dr. Dan Poulter,  Parliamentary Under Secretary of State at the Department of Health, a year ago – questions on penalties are still being asked and  without a clear public answer of all that has changed since then and what remains to be done:

care.data penalties are unclear

Poulter on care.data penalties

[Hansard, March 25 2014 ] [2]

Some changes are being worked on [written evidence to HSC]*[7] planned for autumn 2015 – but does it clarify what has happened concretely to date and how it will protect patients in the pathfinder?

“The department is working to table these regulations in Parliament in 2015, to come into force in the autumn.”

Did this happen? Are the penalties proportionate for big multi-nationals, or will other safeguards be introduced, such as making misuse a criminal offence, as suggested?

2. What about promises made on opt out?

One year on the public still has no fair processing of personal data released by existing health providers. It was extracted in the past twenty-five years, the use of which by third parties was not public knowledge. (Data from hospital visits (HES), mental health, maternity data etc).

The opt out of all data sharing from secondary care such as A&E, stored at the HSCIC, was promised by Jeremy Hunt, Secretary of State for Health, a year ago, on February 25th 2014.

It has still not come into effect and been communicated:

Jeremy Hunt on care.data opt out

[Hansard February 25 2014, col 148] [3]

Jeremy Hunt MP

 

In fact the latest news reported in the media was that opt out ‘type 2’ was not working, as expected. [4]

Many in the public have not been informed at all that they can request opt out, as the last public communication attempt failed to reach all households, yet their data continues to be released.

3. What about clarifying the purposes of the Programme?

The public remains unclear about the purpose of the whole programme and data sharing, noted at the Roy Lilley event:

A business case, and a risk benefit analysis would improve this.

Flimsy assurances based on how data may be used in the initial extraction will not be enough to assure the public how their data will be used in future and by whom, not just the next six months or so.

Once released, data is not deleted, so a digital health footprint is not just released for care.data, it is given up for life. How much patients trust the anonymous, pseudonymous, and what is ‘de-identified’ data depends on the individual, but in a world where state-held data matching form multiple sources is becoming the norm, many in the public are skeptical.[5]

The controls over future use and assurances that are ‘rock solid’, will only be trustworthy if what was promised, happens.

To date, that is not the case or has not been communicated.

What actions have been taken recently?

Instead of protecting the body, which in my opinion has over the last two years achieved external scrutiny of care.data and ensuring promises made were kept, the independent assurance committee, the IAG, is to be scrapped.

The data extraction and data release functions are to be separated.

This could give the impression that data is no longer to be extracted only when needed for a specific purpose, but lends weight to the impression that all data is to be “sucked up” and purposes defined later. If care.data is purposed to replace SUS, it would not be a surprise.

It would however contravene fair processing data protection which requires the purposes of use to be generally clear before extraction.  Should use change, it must be fair. [For example, to have had consent for data sharing for direct care, but then use the data for secondary uses by third parties,  is such a significant change, one can question whether that falls under ‘fair’ looking at ICOs examples.]

So, what now, I asked Dr. Poulter after the Guardian healthcare debate on Tuesday evening this week on giving opt out legal weight?
(I would have asked during the main session, but there was not enough time for all questions).

care.data opt out open question

 

He was not able to give any concrete commitment to the opt out for HES data, or care.data, and simply did not give any answer at all.

What will happen next? Will the pathfinders be going live before the election in May? I asked.

Without any precise commitment, he said that everything was now dependent on Dame Fiona’s IIGOP response to the proposals [made by NHS England].

cd_metw2 Dan Poulter MP

 

What has happened to Transparency?

The public has not been given access to see what the NHS England response to the IIGOP/ Caldicott December review was.

The public has no visibility of what the risks are, as seen by the programme board.

The public is still unclear on what the expected benefits are, to measure those risks against.

And without a business case, the public does not know how much it is costing.

Without these, the public cannot see how the care.data board and DH is effectively planning, measuring progress, and spending public money, or how they will be accountable for its outcomes.

The sad thing about this, is that transparency and “intelligent grown up debate” as Sir Manning called for last year, would move this programme positively ahead.

Instead it seems secretive, which is not building trust.  The deficit of that trust is widely recognised and still needs solidly rebuilt.

Little seems to have been done since last year to make it so.

“Hetan Shah, executive director of the Royal Statistical Society said, ‘Our research shows a “data trust deficit”. In this data-rich world, companies and government have to earn citizens’ trust in how they manage and use data – and those that get it wrong will pay the price.” [Royal Statistical Society, 22 July 2014][6]

Shame.

Care.data is after all, meant to be for the public good.

care.data purposes are unclear
It would be in the public interest to get answers to these questions from recent events.

 

refs:

1. IIGOP care.data report December 2014 https://www.gov.uk/government/publications/iigop-report-on-caredata

2. Hansard March 25th 2014: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140325/halltext/140325h0002.htm

3. Hansard February 25th 2014: http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140225/debtext/140225-0001.htm

4. NHS England statement on Type 2 opt out http://www.england.nhs.uk/2015/01/23/data-opt-out/

5. Ipsos MORI June 2014 survey: https://www.ipsos-mori.com/researchpublications/researcharchive/3407/Privacy-and-personal-data.aspx

6. Royal Statistical Society on the ‘trust deficit’ http://www.statslife.org.uk/news/1672-new-rss-research-finds-data-trust-deficit-with-lessons-for-policymakers

7. *additional note made, Sun 15th incl. reference HSC Letter from HSCIC

care.data – one of our business cases is missing

“The government takes the view that transparency is vital to healthy public services. It has created a new Statistics Commission to improve the quality of information collected (and to end arguments about “fiddling” figures).” [Tim Kelsey, New Statesman, 2001] [1]

In a time of continuing cuts to budgets across the public sector the members of the public have every right and good sense to question, how is public money spent and what is its justification.[#NHS2billion]

For the flagship data extraction care.data programme, it is therefore all the more surprising, that for the short and long term there is [2]:

a) no public proof of how much the programme is costing,
b) little around measurable tangible and intangible benefits,
c) or how the risks have been evaluated.

The Woolly Mammoth in the Room

The care.data programme has been running under its ‘toxic’ [3] brand in a similar form now, for two years.

When asked directly on costs at the Health Select Committee last month, the answer was, at best, woolly.

“Q655   Rosie Cooper: While I appreciate that, can you give us any rough figures? What would a CCG be contributing to this?

Tim Kelsey: I cannot answer that question, but we will very rapidly come back to you with the CCGs’ own estimates of the costs of the programme and how much of that cost is being met by the programme.” [Hansard January 2015][4]

The department appears very unwilling to make public and transparent its plans, risks and costs. I’ve been asking for them since October 2014, in a freedom of information request. [5]

They are still not open. Very much longer will look decidedly shady.

A few limited and heavily redacted parts were released [2] in poor quality .pdf files in Jan 2015, and don’t meet my request as there’s nothing from April-October 2014, and many missing files:

Transparent?

As I followed the minutes and materials released over the last 18 months this was a monstrous gap [7], so I have asked for it before.[8]

I had imagined there was reticence in making it public.
I had imagined, the numbers may be vague.
I hadn’t imagined it just didn’t exist at all.

For the programme whose watchword is transparency, this is more than a little surprising.  A plan had to be drafted to drive transparency, after the FOI was received [which I believe fails section 22 refusal criteria, as the decision to publish was made after the FOI]

– here’s the plan [9] – where are the outcomes?nessie

Is the claim that without care.data the NHS will fail, [10] no more than a myth?

 

Why does the business case and cost/risk analysis matter? What is the future of our data ownership?

 

Because history has a habit of repeating itself and there is a terrible track record in NHS IT which the public cannot afford [22] to allow to repeat, ever again.

The mentality that these unaccountable monster programmes are allowed to grow unchecked, must die out.

Of the NPfIT, Mr Bacon MP said: “This saga is one of the worst and most expensive contracting fiascos in the history of the public sector.”

Last autumn, a new case history [23] examined its rollout, including why local IT systems fail to deliver patient joined up digital records.

Yet, even today, as we hear that IT is critical to the digital delivery of NHS care and we must all be able to access our own health records, we read that tech funds are being cut.

Where is common sense and cohesion of their business planning?

These Big Data programmes do not stand alone, but interact with all sorts of other programmes, policies, and ideas on what will be done and what is possible in future for long term data purposes.

The public is not privvy to that to be able to scrutinise , criticise and positively contribute to plans. That seems short-sighted.

And what of previous data-based ventures? Take as a case study the Dr. Foster IC Joint Venture [NAO, February 2007] [24]

“The Information Centre spent £2.5 million on legal and consultancy advice in developing the joint venture, and setting up the Information Centre. The Information Centre contends that £855,000 of the money paid to KPMG was associated with costs for setting up the Information Centre which included business planning.

However, they could not provide an explicit breakdown of these costs […] We therefore calculate that the total cost to the taxpayer of a 50 per cent share is between £15.4 million and £16.3 million.”

“The Information Centre paid £12 million in cash for a 50 per cent share of the joint venture (see Figure 2 overleaf).

The UK plc made a sizeable investment here. The UK state invested UK taxes in this firm – so what’s the current business case for using data? How transparent are our current state assets and risks?

Being a shareholder in one half, it is fair to ask who are we now sharing the investment risk with or was this part sold soon after?[25] Was that investment a long-term one, or always meant to be so short term and are there any implications for the future of HSCIC?

In 2011 this report [26] another investment group, Bamboo holdings [related to other investor companies], wanted but did not succeed in selling its Dr. Foster stock at an acceptable price, said the portfolio introduction due in their words, to ‘poor performance’.  [Annual investor review from 2013 [p.5]

So what risks does the market see as a whole which are not made available to the public which affect how data is used and shared?

What of the other parts of Dr. Foster Research and so on, we, the state, went on to buy or sell later? It appears complex.

Is the commercial benefit to be made for private companies, seen as part of the big picture benefit to the UK plc or where does state investment and expectation for economic growth fit in?

What assessment has been made of the app market in the NHS and how patient data is expected in future to be held by the individual, released by personal choice to providers through phones?

Is a state infrastructure being built which in the surprisingly short term, may see few healthy people who store their data in it or will we see bias to exclude those with the money and technology to opt out who prefer to keep their health data in a handheld device?

What is the government plan for the future of the HSCIC and our data it manages? The provider Northgate was just bought by European private equity firm Cinven, which now manages a huge swathe of UK’s data [32] and HSCIC brought others in-house. [33]

“Its software and services are used by over 400 UK local authorities, all UK police forces, social housing providers in the UK and internationally, and NHS hospitals. Its IT projects support the sharing of information for criminal intelligence and investigations across UK police forces and the management of health screening records in the UK and in Ireland.”

All the easier to manage – or to manage to sell off?

Is the business plan future-proofed to survive the new age of health data management?

One of the problems with business cases for programmes which drag on and get swamped down in delays, is they become obsolete.

The one year mark has now passed in the announced care.data pause, announced on February 18th 2014.

The letter from Mr.Kelsey on April 14th 2014, said they would use the six months to listen and act on the view of patients, public, GPs and stakeholders.

Many of the open questions remain without any reply at all, never mind public answers to solutions to open issues.

The spine proposal by medConfidential [30] is one of the best and clearest proposals I have found with practical solutions to the failed opt out 9Nu4 for example.

Will these be addressed, or will NHS England answer the Data Guardian report and 27 questions [31] from December?

Is care.data arthritic or going quietly extinct? The last public information made available, is that it is rolling on in the background towards the pathfinders.

“By when will NHS England commit to respect the 700,000 objections to secondary data sharing already logged but not enacted?” [updated ref June 6th 2015]

How is the business plan kept up to date as the market moves on?

Is Big Data in the NHS too big to survive or has the programme learned to adapt and changed?

As Peter Mills asked a year ago, “Is the Government going to take this, as a live issue, into the next general election? Or will it (like the National Programme for IT) continue piecemeal, albeit without the toxic ‘care.data’ banner? “

The care.data programme board transparency agenda in Nov 2014 : “The care.data programme has yet to routinely publish agendas, minutes, highlight reports and finalised papers which arise from the care.data Programme Board.

“This may lead to external stakeholders and members of the public having a lack of confidence in the transparency of the programme.”

We all recognise the problem, but where’s the solution?

Where’s the cost, benefit and risk analysis?

Dear NHS England. One of your business cases is missing.
Why has the public not seen it?
Why are you making it hard to hunt down?
Why has transparency been gagged?

Like Dippy, the care.data business case belongs in the public domain, not hidden in a back room.

Like the NHS, the care.data full risk & planning files belong to us all.

Or is the truth that, like Nessie, despite wild claims, they may not actually exist?

***

more detail:

[1] New Statesman article, Tim Kelsey, 2001

[2]http://www.england.nhs.uk/ourwork/tsd/care-data/prog-board/ care.data programme board webpage

[3] http://www.infosecurity-magazine.com/news/nhs-caredata-pr-fiasco-continues/

[4] http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/handling-of-nhs-patient-data/oral/17740.html

[5] https://www.whatdotheyknow.com/request/caredata_programme_board_minutes?nocache=incoming-621173#incoming-621173

[6] http://www.england.nhs.uk/wp-content/uploads/2015/02/cd-prog-brd-highlt-rep-15-12-14.pdf

[7] http://www.telegraph.co.uk/news/science/science-news/11377168/Natural-History-Museums-star-Dippy-the-dinosaur-to-retire.html

[8] http://jenpersson.com/care-data-postings-summary/

[9] http://www.england.nhs.uk/wp-content/uploads/2015/02/propsl-transpncy-pub-cd-papers.pdf

[10] http://www.computerweekly.com/news/2240215074/NHS-England-admits-failure-to-explain-benefits-of-caredata

[11] http://nuffieldbioethics.org/blog/2014/care-data-whats-in-a-dot-and-whats/

[12] http://www.theinformationdaily.com/2014/03/26/business-scents-boom-in-personal-information-economy

[13] http://www.hscic.gov.uk/article/3887/HSCIC-publishes-strategy-for-2013-2015

[14] http://jenpersson.com/flagship-care-data-2-commercial-practice/

[15] http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/141015-0001.htm

[16] http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/141015-0001.htm

[17] http://www.legislation.gov.uk/ukpga/2014/23/pdfs/ukpga_20140023_en.pdf

[18] http://jenpersson.com/hear-evil-evil-speak-evil/

[19] https://www.whatdotheyknow.com/request/nhs_patient_data_sharing_with_us

[20] http://www.hscic.gov.uk/hesdatadictionary

[21] http://www.bbc.co.uk/news/uk-politics-24130684

[22]  http://www.nao.org.uk/wp-content/uploads/2007/02/0607151.pdf

[23] http://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf

[24] http://www.nao.org.uk/wp-content/uploads/2007/02/0607151.pdf

[25] http://www.healthpolicyinsight.com/?q=node/688

[26]http://www.albion-ventures.co.uk/ourfunds/pdf%20bamboo/Bamboo%20IOM%20signed%20interims%2030611.pdf

[27] http://www.v3.co.uk/v3-uk/news/2370877/nhs-needs-patients-digital-data-to-survive-warns-health-chief

[28 ]http://uk.emc.com/campaign/global/NHS-Healthcare-Report-2014/index.htm

[29 ] http://uk.emc.com/campaign/global/NHS-Healthcare-Report-2014/index.htm

[30] https://medconfidential.org/wp-content/uploads/2015/01/2015-01-29-A-short-proposal.pdf

[31] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/389219/IIGOP_care.data.pdf

[32] http://www.privateequitywire.co.uk/2014/12/23/215235/cinven-acquire-northgate-public-services

[33] http://www.ehi.co.uk/news/EHI/9886/hscic-starts-sus-and-care-id-transfer

 

The care.data coach ride: communications – all change or the end of the line?

Eleven months ago, care.data was put on hold and promises made to listen to professional and public opinion, which would shape programme improvement.

Today, Sir Bruce Keogh of NHS England said: “an unprecedented shift of resources and care into GP surgeries was necessary to help the NHS withstand the twin pressures of rising demand and tight budgets.”
[The Guardian, 19 Jan 2015]

care.data right now, seems like the straw on the camel’s back that GPs do not need, and that in its current format, many patients do not want.

Why the rush to get it implemented and will the costs of doing so, – to patients, to professionals and to the programme – be worth it?

What has NHS England heard from these listening events?

The high level ‘you said, we did’ document, sharing some of the public concerns raised with care.data, has been published by NHS England.

It is an aggregated, high level presentation, but I wonder if it really offers much more insight than everyone knew a year ago? It’s a good start, but does it suggest any real changes have taken place as a result of listening and public feedback?

Where are we now, what does it tell us, and how will it help?

Some in the media argue, like this article, that a:

“massive privacy campaign effectively put a halt to it last year.”

In reality it was the combination of the flaws in the care.data plans for the GP  data extraction and sharing programme, and past NHS data sharing practices, which was its own downfall.

Campaigners merely pointed these flaws out.

Once they were more apparant, many bodies involved in good data sharing and those with concerns for confidentiality, came together with suggestions to make improvements.

But to date and a year after patients first became aware of the issues, even this collaboration has not yet solved patients’ greatest concern, that data is being given, without the individuals’ knowledge or consent, to third parties for non-clinical care, without oversight once they receive it.

The HSCIC 2013-15 Roadmap outlined 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 was first promised, to ‘innovators of all kinds’  just as HES was delivered to commercial businesses, [including reportedly Google, and PA Consulting getting 15 years of NHS data], all with unclear and  unproven patient benefit or UK plc economic development and gain.

 

Patients are concerned about this.

 

They have asked about the assurance given that the purposes are more defined but still don’t rule out commercial users, re-use licences have not been categorically ruled out, and patients have asked further, detailed questions, which are still open.

View some of them for yourself here:  including coercion, disability inclusion, and time and time again concerns over the accuracy and quality of records, which may be uploaded, and mistakes never deleted upon which judgments are made, from records which the patient may never have seen.

care.data events have been hosted by and held for a group of charities, other care.data listening events held by the care.data advisory group, [include Peterborough and Coin Street, London]  [you can view the 26th November Manchester event with questions from 33 minutes in] and those held as part of the NHS Open House event in June [from 01:13.06 in the NHS Open House video], all asked sensible detailed questions on process and practice which are still to be addressed, which are not in the high level ‘you said, we did.’

Technical and practical processes of oversight have been changed to improve the way in which data was shared, but what about data use that has been the crux of patient concern?

How will the questions that remain unanswered be addressed? – because it seems the patient letter, posters and flyers won’t do it.

What now?

Communications are rolling out in pathfinders

All year the message has been the same: communication was poor.

“We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.” [October 2014, Mr. Kelsey, NHS England]

The IIGOP report on care.data outlined in December 2014 what still remains to be done and the measures required for a success.

These go far beyond communications issues.

But if pathfinders are being asked to spend time and money now, it must be analysed now, what will new communications materials look like, compared with those from a year ago.

Whilst I would agree that communications were poor, the question that remains to be asked is why? Why was communication poor? Why did a leaflet that was criticised by ICO, criticised by the GPES advisory group, criticised by many more and glaringly a failed piece of communication to outsiders, why was all that advice and criticism ignored and it got sent [or not sent] to patients across England?

[Sept 2013 GPES Advisory] “The Group also had major concerns about the process for making most patients aware of the contents of the leaflets before data extraction for care.data commenced”.

We could say it doesn’t matter. However it is indicative of the same issues now, as then, and throughout the year. There has been lots of positive advice given, shared, and asked for at patient listening events. If this is the extent of “you said, we did”, feedback is still being ignored. That matters.

Because if it continues to be, any new communications will have the same failure-to-launch that they did a year ago.

In the last year we have heard repeatedly, that the pause will enable the reshaping of communications materials.

Sadly, the bell hasn’t rung yet, on what really needs done. It looks to me as though the communications people have done their best, dealing with glaring gaps in content.

Communications materials are not ready, because it’s not clear where care.data is going, or what’s the point of the trip.

bellbroken

 

All change?

It has failed to address the programme as a change issue.

That is what it is at its core, and it is this failure which explains why it has met so much resistance.

If the 26th November Manchester questions are anything to go by the reason for the change as to why our data is needed at all, remains very unclear, for professionals and patients.

How patients will be empowered to manage its ongoing changes into the future, is also undefined.

In addition, there has been little obvious, measurable change in the substance of the programme communication in the last 12 months.

New materials suggest no real changes have taken place as a direct result of listening to public feedback at all. They may have from feedback that was given before the pause, but what impact has the pause had?

If you disagree, look over the GP care.data leaflet from 2013 and see what changes you would make now. Look at the 2013 patient leaflet and see what substantial improvement there is. Look at the basic principles of data protection and see if the care.data programme communications clearly and simply address them any better now.

What are the new plans for new communications, and how do they pick up on the feedback given at ‘hundreds’ of listening events?

The communications documents are a good start at addressing a complex set of questions.

However, whilst they probably meet their spec it doesn’t meet their stated objective: to show clear ‘we did’ nor a clear future action plan.

The listening feedback may have been absorbed, but hasn’t generated any meaningful new communications output.

It shows as far as listening goes, real communications in this one-way format, may have reached the end of the line.

How can patients make a decision on an unknown?

The new communications in posters and the ‘you said, we did’, state that access to the information collected will be limited in the pathfinder – but it does not address the question in the longer term.

This is a key question for patients.

It should be simple. Who will have access to my data and why?

No caveats, no doubts, no lack of clarity.

Patients should be properly informed how ALL their data is being used that is held by HSCIC. The opt out talked in February 2014 of two options; for data to be extracted under care.data at GPs and all the other data already stored at the HSCIC from hospitals and elsewhere. To explain those two different options patients first need told about all the data which is stored, and how it is used.

Talk about the linkage with other datasets, the future extraction and use of social care data, the access given via the back office to police and other non-health government departments. Stop using ‘your name will not be used’ in materials like the original patient leaflet – It may be factual for care.data per se, but is misleading on what of our personal data is extracted and used without our consent or awareness – most of us don’t know the PDS extracts name at all.

Being cagey does not  build trust. Incomplete explanation of uses would surely not meet the ICO data protection requirements of fair processing either. And future uses remain unexplained.

For care.data this is the unknown.

NHS England is yet to publish any defined future use and scope change process, though its plan is clearly mapped:

caredatatimeline

 

There must be a process of how to notify patients either of what will be extracted, or who will be given access to use it > a change process. A basic building block for fair processing. Not a back door.

It needs to address: how is a change identified, who will be notified within what time frame before the extraction, how will the training and access changes be given, and how will patients be informed of the change in what may be extracted or who may be using it and be given the right to change their opt in / out selection. The law requires fair processing BEFORE the change happens.

We patients should also be made aware what impact this choice has on data already extracted, and that nothing will be deleted from our history. Even if its clearly a mistake. How does that affect reports?

Communication is impossible whilst the content & scope is moving.

I’ve been banging on, quite frankly,  about scope, since March.

This is what needs done. Pull over, and get the fixes done.

> Don’t roll out any comms in a pathfinder yet. They’re not ready.

> First sort out the remaining substance so you know what it is that materials are communicating.  What, who, why, when, how?

The IIGOP report lists clearly all that needs done and how to measure their success: it’s not communications, it’s content.

The final technical, security and purposes pieces still need resolved; practical questions on opt out,  legislation needed to make sure the  opt out really is robust, that the so-called ‘one strike and out’ isn’t just a verbal assurance but actually happens, and that future access is defined beyond the pathfinder – who will have access at and outside the new secure lab – not only for the pilot, but future.

Get the definition of scope limited so as to meet fair processing, and get the future scope change communication process ironed out.

How will patients be communicated to not only now, not in a pathfinder, but for every change that happens in the future which has a fair processing requirement?

Only then can the programme start to truly address change and communications with meaningful messages. Until then, it’s PR.

Once you know what you’re saying, how to say it becomes easy.

If it’s not proving easy to do well, we need to ask why.

change>>>References>>>

 1. You said, we did NHS England presentation

2. IIGOP report into care.data

3. Pharmacists to access DWP data – example of scope change who accesses data and why, which fails fair processing without a change process in place to communicate

>>>>>>>>>

For anyone interested in considering the current materials in detail, see below: this doesn’t address the posters shared in the Manchester event or what is missing, but many of the messages are the same as in the ‘you said, we did’ and it’s a start.

>>>>>>>>>

Addendum:

1. The “co-production” approach to materials

2. Why a scope change management process is vital to trust for care.data.

3. Some feedback on the high level ‘you said, we did’ document

4. What do communications require to improve from those before?
5. Hard questions

 

1. The “co-production” approach to materials

The IIGOP report on care.data outlined in December 2014 asked a very sound question on page 8:

“What are the implications of using locally developed communications material (“co-production”) for subsequent national rollout ?”
The Programme is developing a “co-production” approach to initial GP and patient-facing material, based on feedback from the care.data “listening period” and from local events and formal research.
“The intent is to ensure that there is local ownership of material used to communicate with professionals and patients in the Pathfinder stage.”
To ask a basic tenet of change management: what’s in it for them?
It’s unclear to what level of detail the national materials will go, and how much local sites will create.

 

If I were at CCG or GP level and responsible for ‘local ownership’ of communications from this national programme, I’d be asking myself why I am expected to reinvent the wheel? I’d want to use national standards as far as possible.

Why should local organisations have to produce or design materials which should be communicating the intent of a programme whose purpose is to be identical for every one of the 62 million in England registered with a GP? Let’s hope the materials are national.

What benefit will a local level site see, by designing their own materials – it will cost time and money – where’s the benefit for the patients in each practice, for the GPs and the programme?
Is it too cynical to ask, has NHS England not got the resources to do this well and deliver ready-done?
If so, I should urge a rethink at national level, because in terms of time and people’s effort this multiple duplication will be a costly alternative.
It also runs the risk of costly mistakes in accuracy and inconsistency.
There appears to date to be no plan yet how future changes will be communicated. This must be addressed before the pathfinder and in any current communication, and all local sites need the same answer because the new decisions on extraction, will be at national level.

2. Some feedback on the high level ‘you said, we did’ document:

page 9: “present the benefits” – this fails to do so  – this is however not a failing of this presentation – there is simply still no adequate cost benefit document available in the public domain.

page 11: “keep data safe” – the secure lab is mentioned – a great forwards step compared with HES access – and it states analysts will only access it there in the pathfinder – but what about after that?

page 13: “explain the opt out clearly”: “You can opt out at any time. Just talk to your GP Practice.” > I have, but as far as I know my data is still released by the HSCIC from HES and wider secondary collections of data, which I did not know were extracted and did not consent to being used for secondary purposes. Opt out doesn’t appear to actually work. Please let me know if that’s a misunderstanding on my part. I’d be delighted to hear it is functional.

page 15: “legislative changes” – the biggest concern patients raise over and over again, is sharing data beyond their direct care with commercial companies and for non-NHS purposes. This has not been excluded. No way round that. No matter how you word it and made harder by the fact that data was released from HES in July to Experian for use in mosaic. If that makes the definition, then it’s loose.

The one-strike-and-out is not mentioned in materials, although it was discussed on Nov 26th in Manchester. When is the legislation to actually happen?

Both this and the opt out are still not on a robust legal basis – much verbal assurance has been given on “legislative changes” but they are meaningless if not enacted.

page 17: “access safeguards” – the new audit trail is an excellent step. But doesn’t help patients know if OUR data was used, it’s generic. We need some sort of personal audit trail of our consent, and show how it is respected in what data is released, to who, when, and why. The over emphasis of ‘only with legal access’ is overdone as 251 has been used to approve data access for years without patient knowledge or consent. If it is to be reassuring, it is somewhat misleading; data is shared much more widely than patients know. If it is to answer questions asked in the listening feedback events, there needs to be an explanation of how the loop will be closed to feed the information back and how it will be of concrete benefit.

And in general:

Either “this will not affect the care you receive”  or it will. Both sentences cannot be true.  Either way, there should be no coercion of participation:

“If you decide to opt out it won’t affect the care and treatment you receive. However, if significant amounts of people do opt out, we won’t be able to collect enough information to help us improve NHS services across the nation.”
Agreement must in usual medical environments, be given voluntarily and freely, without pressure or undue influence being exerted on the person either to accept or refuse.

3. What do communications require to improve from those before?

a. Lessons Learned for improvement:

The point of the pause was in order to facilitate the changes and improvement needed in the programme, whose flaws were the reason to stop in February. All the questions need shared so that all the CCGs can benefit from all the learning. If all the flaws are not discussed openly, how can they be fixed? Not only being fixed, but being seen to be fixed would be productive and useful for the programme. [The IIGOP report on care.data outlined in December 2014 covers these.]

b. Consistency:

Raw feedback will be vital for CCGs and GP practices to have. It has not been released and the ‘you said, we did’ is a very high level aggregate of what was clear last February. Since then, the detailed questions are what should be given to give all involved the information to able to understand, and to have the answers for consistently.

This way they will be properly prepared for the questions they may get in any pilot rollout. If questions have already been asked in one place, the exact same answer should be reproduced in another.

c. Time-saving:

If the same question has already been asked at a national or regional event, why make the local level search for the same answer again?  This could be costly and pointless multiplied many times over.

d. Accuracy:

Communications aren’t always delivered correctly. They can be open to misinterpretation or that the comms team simply gets facts wrong.  That would fail data protection requirements and fail to protect GPs. How will this accuracy be measured if done at local level and how will it be measured and by whom?

The IIGOP report asked: “What are the success criteria for the Pathfinders? How will we know what has worked and what has not? “

I know from my own experience that either the communications team or consultants can misunderstand the facts, or something can easily become lost in translation, from the technical theory to the tangible explanation.

4. Future change: Control of scope change for linkage and  access

Current communications may address the current pathfinder extraction, but they are not fit for purpose for a rollout which is intended to be long term and ever changing.

So what exactly is it piloting? – a “mini” approach? – if so, to what purpose? or is it just hoping to get X amount of data in, done and dusted, as ‘a start.’

If the pathfinder patients are only told a sub-set of information in a pilot rollout, we should ask:

a. why? Is this in order to make the idea sound more appealing?

b. how will it be ensured that their consent, or lack of objection, is fully informed and therefore meets Data Protection requirements?

and finally

c. how will future changes be communicated? This must be addressed before the pathfinder and in any current communication.

For example; who gets access to data may change so you can’t say only “” access to the information collected will only be given to a limited number of approved analysts who will have to travel to a new secure data facility that the HSCIC is setting up.”

Pharmacists who have access to this data for direct care, may also now be getting access to DWP data.

“the Royal Pharmaceutical Society has already said that the new measures could affect trust between patients and pharmacists.” [EHI Dec 30th 2014]

When patients signed up for the SCR at a GP practice they may not realise it is shared with pharmacies. When data is shared with the Department of Work and Pensions, citizens may not realise it could be shared with pharmacies.  Neither told the other when signing up that future access would allow this cross referencing and additional access.

This is a real life scenario that should not be glossed over in a brochure. A hoped for ‘quick-fix’ now, will simply cause later problems, and if data is used inappropriately, there may not be another opportunity for winning back trust again.

To get it legally wrong now, would be inexcusable.

Here’s why it would be better to do no more communications now:

5. Hard questions can’t be avoided

Currently, comms still avoid the hard questions, and those are the ones people want answers for. Open questions remain unaddressed.

Raw questions asked in July at a charities’ event are, with some post-event reshaping and responses here. Note how many are unknowns.

Changes have been suggested to be constructive.

One attendee of a public listening event commented online in October 2014, on the NHS England CCG announcement:

“I am one of those that has tried hard to engage with you to try and make sure that people can be assured that their personal and private information will not be exploited, I feel that you have already made the decision to press ahead regardless and feel very let down.

“Please publish the findings of your listening exercise and tell people how you intend to respond to their concerns before proceeding with this.”

People have engaged and want to be involved in making this programme work better, if it has to work at all like this.

Q: Where is the simple, clear public business case for cost and benefits?

The actual raw questions have been kept unpublished for no clear purpose. It could look like avoiding answering the hard questions.

The IIGOP report captures many of them; for example on process of competence, capacity and processes – and the report shows there is still a need to “demonstrate that what goes on ‘under the bonnet’ of Pathfinder practice systems operates in the same way that patients are being told it does.”

When is the promised legislative change to actually happen? The opt out is still not on a robust legal basis – much verbal assurance has been given on “legislative changes” but they are meaningless if not enacted.

It’s all about trust and that relationship, like the communication and feedback responses, has to be two-way.

care.data related December news you may have missed in the holiday

January looks like it’s going to be a busy NHS news month and December set out a very information rich programme.

Do you need a catch up from the holidays time? I know I could do with going back to September really, I blinked and missed the last quarter. But lots of news came in at the end of year, in typical holiday time, which is relevant to care.data, health data sharing and its backdrop:

[1] December 18th:  The Independent Information Governance Oversight Panel report raises questions about the preparation for a pilot stage of the care.data programme.

A very thorough and  most significant report. I considered this is more detail here.

[2] December 22nd: The Primary Care Support (PCS) Services procurement. Launched in November 2014 interested suppliers were asked to respond to a Pre-Qualification Questionnaire (PQQ).

“Members of our Stakeholder Group, staff from the PCS Service and experts in the procurement team have been evaluating the responses received from the PQQ. We have now produced a short list of suppliers to invite to the next stage of the procurement. We will be announcing the shortlisted suppliers in January 2015.”

How will this affect primary care records’ management and is that unknown being factored into current decision making?

[3] December 28th The Guardian reported the delayed Rose Report would be out in January and say the NHS is hampered by poor management structure.

[4] December 30th Poulter announces DWP prescription check “The government is planning to give High Street pharmacists access to Department of Work and Pensions IT systems to check whether patients in England are entitled to free prescriptions.”

This raises a raft of questions on data protection with implications for patient confidentiality, expected purposes, informed consent and data linkage.

[5] December: a New HSCIC Code of Confidentiality

A longer read and leaves not everyone content it addresses all the needed questions. Opt outs and technical solutions on anonymisation remain two areas of undefined detail relevant for care.data.

[6] January 2nd: IIGOP annual report How health and social care organisations are implementing recommendations about sharing information.

This is a key publication on data sharing as a whole [not only care.data] – snuck in on one of the quietest days of the year perhaps? Some points of particular mention are those which set expectations for legislation change:

“During a debate in the House of Lords in May 2014, in the face of criticism of the care.data programme, the Government said it was sympathetic to calls for IIGOP to be placed on a statutory footing.”

One can only expect then it is a question of when, not if, the IIGOP role will become enshrined in law. Before the next major data sharing step for care.data, the planned pathfinders perhaps?

The second piece of law needing defined and actioned goes back almost a year to February 2014 and Mr. Hunt’s promise of a statutory opt out, which would seem fundamental to any next step step and pilots.

On opt out IIGOP said:

“It is the view of IIGOP that progress at a nationwide level in achieving appropriate sharing of information for direct care will not be satisfactory until core building blocks are in place, including agreement on terminology, clarity on consent and consistency of arrangements for objection and “opt out.”

That opt out refers to all medical data sharing, not only that for care.data, which comes in for criticism but notes some positive side effects:

“The unintended consequence of care.data was a positive cycle of change.”

Most positively, the report notes the changed attitude to public awareness and expectations around personal data management:

“Over the past year, the subject of information governance has moved from the backwaters of organisational management into the mainstream of public discussion. Debate about when it is right to share people’s care data is no longer restricted to policymakers, technical experts and medical ethicists.”

[7] January 5th: The Health and Social Care Information Centre will launch a secure data lab for viewing sensitive patient data in March, allowing it to support the pathfinder stage of NHS England’s controversial care.data programme.

What about opt out – technical feasibility and the Ministers promises to put it into legislation, still not done yet?

[8] Public health commissioning in the NHS 2015 to 2016 plan

Everything connected to everything in the market matters in the bigger picture. See [2], [4] and consider commercial data uses.

[9] Predictions from professionals for 2015 via EHI Insider: A clear direction for NHS IT was set in 2014; but could be disrupted by the general election due on 7 May, according to experts asked for their predictions for healthcare IT in 2015.

So, this quarter is getting off to an information-rich start with the December releases of reports and news having laid an interesting foundation for the coming quarter. And election purdah at the end of March…

[10] My own care.data wish list – no more surprises please  – what will care.data plans hold for 2015?

 

****

References:

[1] IIGOP care.data report https://www.gov.uk/government/publications/iigop-report-on-caredata

[2] Primary Care support services outsourcing / transformation http://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2014/12/Final_Stakeholder_Update_December_2014-.pdf

[3] The Rose Report http://www.theguardian.com/society/2014/dec/28/nhs-management-system-complex-rose-report

[4] www.ehi.co.uk/news/EHI/9813/poulter-announces-dwp-prescription-check

[5] HSCIC code of confidentiality http://systems.hscic.gov.uk/infogov/codes/cop/code.pdf

[6] IIGOP Annual Report: https://www.gov.uk/government/publications/iigop-annual-report-2014

[7] HSCIC secure data lab news: http://www.ehi.co.uk/news/primary-care/9815/hscic-data-lab-to-launch-in-march

[8] Commissioning plans: https://www.gov.uk/government/publications/public-health-commissioning-in-the-nhs-2015-to-2016

[9] 2015 Predictions: http://www.ehi.co.uk/news/primary-care/9800/coming-up-in-2015

[10] My own wish list fior care.data in 2015:  http://jenpersson.com/care-data-2015-list/

Oh, and my New Year’s Resolution, I’m cutting my posts in half. Nothing over 1000 words.

A review of NHS news in 2014, from ‘the Spirit of the NHS Future’.

Respectful of all the serious, current news and that of the past year, this is a lighthearted look back at some of the stories of 2014. ‘The Spirit of the NHS Future’ looks forwards into 2015 & at what may still be changed.

***

The Spirit of the NHS Future  visits the Powers-at-be
(To the tune of The 12 Days of Christmas)

[click to open music in another window]

On the first day of Christmas
the Spirit said to me:
I’m the ghost of the family GP.

On the second day of Christmas
the Spirit said to me: a
two-tiered system,
in the future I foresee.

On the third day of Christmas
the Spirit said to me:
You told GPs,
merge or hand in keys,
feder-ate or salaried please.

On the fourth day of Christmas
the Spirit said, I hear:
“Save our surgeries”,
MPIG freeze,
partners on their knees,
blame commissioning on local CCGs.

On the fifth day of Christmas
the Spirit said to me:
Five Ye-ar Plan!
Call it Forward View,
digital or screwed.
Let’s have a new review,
keep ‘em happy at PWC.

On the sixth day of Christmas
the Spirit said to me:
Ill patients making,
out-of-Ho-urs-rings!
Callbacks all delayed,
six hours wait,
one one one mistakes.
But must tell them not to visit A&E.

On the seventh day of Christmas
the Spirit said, GPs:
see your service contract,
with the QOF they’re trimming,
what-will-this-bring?
Open Christmas Eve,
New Year’s no reprieve,
please don’t cheat our Steve,
or a breach notice will you see.

On the eighth day of Christmas
the Spirit said to me:
Population’s ageing,
social care is straining,
want is pro-creating,
obe-si-ty’s the thing!
Cash to diagnose,
statins no one knows,
indicator woes,
and Doc Foster staff employed at CQC.

On the ninth day of Christmas
the Spirit said to me:
Cash for transforming,
seven days of working.
Think of emigrating,
ten grand re-registration.
Four-teen hour stints!
DES and LES are fixed.
Called to heal the sick,
still they love the gig,
being skilled, conscientious GPs.

On the tenth day of Christmas
the Spirit said to me:
Many Lords a-leaping,
Owen’s not been sleeping,
private contracts creeping,
Circle’s ever growing.
Care home sales not slowing.
Merge-eve-ry-thing!
New bidding wars,
tenders are on course
top nine billion, more,
still you claim to run it nation-al-ly.

On the eleventh day of Christmas
the Spirit said to me:
Patient groups are griping,
records you’ve been swiping,
listening while sharing,
data firms are buying,
selling it for mining,
opt-out needs defining,
block Gold-acre tweets!
The care dot data* board
minutes we shall hoard,
troubled pilots loom.
Hi-de Partridge’s report behind a tree?

On the twelfth day of Christmas
the Spirit said to me:
disabled are protesting
sanctions, need arresting,
mental health is failing,
genomes we are trading,**
staff all need more paying,
boundaries set for changing,
top-down re-arranging,
All-this-to-come!
New hires, no absurd,
targets rule the world,
regulation first.
What’s the plan to save our service, Jeremy?

– – – – – –

Thanks to the NHS staff, whose hard work, grit and humour, continues to offer the service we know. You keep us and our loved ones healthy and whole whenever possible, and deal with us & our human frailty, when it is not.

Dear GPs & other NHS staff who’ve had a Dickens of a year. Please, don’t let the system get you down.

You are appreciated, & not just at Xmas. Happy New Year everyone.

“It is a fair, even-handed, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.”
Charles Dickens,   A Christmas Carol, 1843

– – – – –

*New Statesman, Dr Phil Whitaker’s Health Matters column, 20th March 2014, ‘Hunt should be frank about the economic imperative behind the urgency to establish the [care.data] database and should engage in a sensible discussion about what might be compromised by undue haste.’

**Genomics England Kickstarting a Genomics Industry