Tag Archives: NHS England

#caredata, care.data, choice, genomics, NHS England, research, scope

Wearables: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care? [#NHSWDP 3]

 

Consent to data sharing appears to be a new choice firmly available on the NHS England patient menu if patient ownership of our own records, is clearly acknowledged as ‘the operating principle legally’.

Simon Stevens, had just said in his keynote speech:

“..smartphones; […] the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond ” Simon Stevens, March 18 2015.

Tim Kelsey, Director Patients and Information, NHS England, then talked about consent in the Q&A:

“We now acknowledge the patient’s ownership of the record […] essentially, it’s always been implied, it’s still not absolutely explicit but it is the operating principle now legally for the NHS.

“So, let’s get back to consent and what it means for clinical professionals, because we are going to move to a place where people will make those decisions as they currently do with wearable devices, and other kinds of mobile, and we need to get to a point where people can plug their wearable device into their medical record, and essentially manage their data as they wish.

“It is essentially, their data.”

How this principle has been applied in the past, is being now, and how it may change matters, as it will affect many other areas.

Our personal health data is the business intelligence of the health industry’s future.

Some parts of that industry will say we don’t share enough data. Or don’t use it in the right way.  For wearables designed as medical devices, it will be vital to do so.

But before some launch into polemics on the rights and wrongs of blanket ‘data sharing’ we should be careful what types of data we mean, and for what purposes it is extracted.It matters when discussing consent and sharing.

We should be clear to separate consent to data sharing for direct treatment from consent for secondary purposes other than care (although Mr Kelsey hinted at a conflation of the two in a later comment). The promised opt-out from sharing for secondary uses is pending legal change. At least that’s what we’ve been told.

Given that patient data from hospital and range of NHS health settings today, are used for secondary purposes without consent – despite the political acknowledgement that patients have an opt out – this sounded a bold new statement, and contrasted with his past stance.

Primary care data extraction for secondary uses, in the care.data programme, was not intended to be consensual. Will it become so?

Its plan so far has an assumed opt-in model, despite professional calls from some, such as at the the BMA ARM to move to an opt-in model, and the acknowledged risk of harm that it will do to patient trust.

The NHS England Privacy Assessment said: ‘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.’

A year into the launch, Jan 2014, a national communications plan should have solved the need for fair processing, but another year on, March 2015, there is postcode lottery, pilot approach.

If in principle, datasharing is to be decided by consensual active choice,  as it “is the operating principle now legally for the NHS” then why not now, for care.data, and for all?

When will the promised choice be enacted to withhold data from secondary uses and sharing with third parties beyond the HSCIC?

“we are going to move to a place where people will make those decisions as they currently do with wearable devices” [Widening digital participation, at the King’s Fund March 2015]

So when will we see this ‘move’ and what will it mean?

Why plan to continue to extract more data under the ‘old’ assumption principle, if ownership of data is now with the individual?

And who is to make the move first – NHS patients or NHS patriarchy – if patients use wearables before the NHS is geared up to them?

Looking back or forward thinking?

Last year’s programme has become outdated not only in principle, but digital best practice if top down dictatorship is out, and the individual is now to “manage their data as they wish.”

What might happen in the next two years, in the scope of the Five Year Forward Plan or indeed by 2020?

This shift in data creation, sharing and acknowledged ownership may mean epic change for expectations and access.

It will mean that people’s choice around data sharing; from patients and healthy controls, need considered early on in research & projects. Engagement, communication and involvement will be all about trust.

For the ‘worried well’, wearables could ‘provide digital “nudges” that will empower us to live healthier and better lives‘ or perhaps not.

What understanding have we yet, of the big picture of what this may mean and where apps fit into the wider digital NHS application and beyond?

Patients right to choose

The rights to information and decision making responsibility is shifting towards the patient in other applied areas of care.

But what data will patients truly choose to apply and what to share, manipulate or delete? Who will use wearables and who will not, and how will that affect the access to and delivery of care?

What data will citizens choose to share in future and how will it affect the decision making by their clinician, the NHS as an organisation, research, public health, the state, and the individual?

Selective deletion could change a clinical history and clinician’s view.

Selective accuracy in terms of false measurements [think diabetes], or in medication, could kill people quickly.

How are apps to be regulated? Will only NHS ‘approved’ apps be licensed for use in the NHS and made available to choose from and what happens to patients’ data who use a non-approved app?

How will any of their data be accessed and applied in primary care?

Knowledge is used to make choices and inform decisions. Individuals make choices about their own lives, clinicians make decisions for and with their patients in their service provision, organisations make choices about their business model which may include where to profit.

Our personal health data is the business intelligence of the health industry’s future.

Who holds the balance of power in that future delivery model for healthcare in England, is going to be an ongoing debate of epic proportions but it will likely change in drips rather than a flood.

It has already begun. Lobbyists and companies who want access to data are apparently asking for significant changes to be made in the access to micro data held at the ONS. EU laws are changing.

The players who hold data, will hold knowledge, will hold power.

If the NHS were a monopoly board game, data intermediaries would be some of the wealthiest sites, but the value they create from publicly funded NHS data, should belong in the community chest.

If consent is to be with the individual for all purposes other than direct care, then all data sharing bodies and users had best set their expectations accordingly. Patients will need to make wise decisions, for themselves and in the public interest.

Projects for research and sharing must design trust and security into plans from the start or risk failure through lack of participants.

It’s enormously exciting.  I suspect some apps will be rather well hyped and deflate quickly if not effective. Others might be truly useful. Others may kill us.

As twitter might say, what a time to be alive.

Digital opportunities for engaging citizens as far as apps and data sharing goes, is not only not about how the NHS will engage citizens, but how citizens will engage with what NHS offering.

Consent it seems will one day be king.
Will there or won’t there be a wearables revolution?
Will we be offered or choose digital ‘wellness tools’ or medically approved apps? Will we trust them for diagnostics and treatment? Or will few become more than a fad for the worried well?
Control for the individual over their own data and choice to make their own decisions of what to store, share or deny may rule in practice, as well as theory.
That practice will need to differentiate between purposes for direct clinical care and secondary uses as it does today, and be supported and protected in legislation, protecting patient trust.
“We are going to move to a place where people will make those decisions as they currently do with wearable devices, and other kinds of mobile, and we need to get to a point where people can plug their wearable device into their medical record, and essentially manage their data as they wish.”
However as ‘choice’ was the buzzword for NHS care in recent years – conflated with increasing the use of private providers – will consent be abused to mean a shift of responsibility from the state to the individual, with caveats for how it could affect care?
With that shift in responsibility for decision making, as with personalized budgets, will we also see a shift in responsibility for payment choices from state to citizen?
Will our lifestyle choices in one area exclude choice in another?
Could app data of unhealthy purchases from the supermarket or refusal to share our health data, one day be seen as refusal of care and a reason to decline it? Mr Kelsey hinted at this last question in the meeting.
Add a population stratified by risk groups into the mix, and we have lots of legitimate questions to ask on the future vision of the NHS.
He went on to say:
“we have got some very significant challenges to explore in our minds, and we need to do, quite urgently from a legal and ethical perspective, around the advent of machine learning, and …artificial intelligence capable of handling data at a scale which we don’t currently do […] .
“I happen to be the person responsible in the NHS for the 100K genomes programme[…]. We are on the edge of a new kind of medicine, where we can also look at the interaction of all your molecules, as they bounce around your DNA. […]
“The point is, the principle is, it’s the patient’s data and they must make decisions about who uses it and what they mash it up with.”
How well that is managed will determine who citizens will choose to engage and share data with, inside and outside our future NHS.
Simon Stevens earlier at the event, had acknowledged a fundamental power shift he sees as necessary:
“This has got to be central about what the redesign of care looks like, with a fundamental power shift actually, in the way in which services are produced and co-produced.”

That could affect everyone in the NHS, with or without a wearables revolution.

These are challenges the public is not yet discussing and we’re already late to the party.

We’re all invited. What will you be wearing?

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[Previous: part one here #NHSWDP 1  – From the event “Digital Participation and Health Literacy: Opportunities for engaging citizens” held at the King’s Fund, London, March 18, 2015]

[Previous: part two #NHSWDP 2: Smartphones: the single most important health treatment & diagnostic tool at our disposal]

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Apple ResearchKit: http://techcrunch.com/2015/03/09/apple-introduces-researchkit-turning-iphones-into-medical-diagnostic-devices/#lZOCiR:UwOp
Digital nudges – the Tyranny of the Should by Maneesha Juneja http://maneeshjuneja.com/blog/2015/3/2/the-tyranny-of-the-should

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#caredata, care.data, choice, empowerment, engagement, genomics, NHS England

smartphones: the single most important health treatment & diagnostic tool at our disposal [#NHSWDP 2]

After Simon Stevens big statement on smartphones at the #NHSWDP event, I’d asked what sort of assessment had the NHS done on how wearables’ data would affect research.

#digitalinclusion is clearly less about a narrow focus on apps than applied skills and online access.

But I came away wondering how apps will work in practice, affect research and our care in the NHS in the UK, and much more.

What about their practical applications and management?

NHS England announced a raft of regulated apps for mental health this week, though it’s not the first approved.  

This one doesn’t appear to have worked too well.

The question needs an answer before many more are launched: how will these be catalogued, indexed and stored ? Will it be just a simple webpage? I’m sure we can do better to make this page user friendly and intuitive.

This British NHS military mental health app is on iTunes. Will iTunes carry a complete NHS approved library and if so, where are the others?

We don’t have a robust regulation model for digital technology, it was said at a recent WHF event, and while medical apps are sold as wellness or fitness or just for fun, patients could be at risk.

In fact, I’m convinced that while medical apps are being used by consumers as medical devices, for example as tests, or tools which make recommendations, and they are not thoroughly regulated, we *are* at risk.

If Simon Stevens sees smartphones as: “going to be the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond,” then we’d best demand the tools that work on them, work safely. [speech in full]

And if his statement on their importance is true, then when will our care providers be geared up to accepting extracts of data held on a personal device into the local health record at a provider – how will interoperability, testing and security work?

And who’s paying for them? those on the library right now, have price tags. The public should be getting lots of answers to lots of questions.

“Over the coming decade”  has already started.

What about Research?: I know the Apple ResearchKit had a big reaction, and I’m sure there’s plenty of work already done on expectations of how data sharing in wearables affect research participation. (I just haven’t read it yet, but am interested to do so,  feel free to point any my way).

I was interested in the last line in this article: “ResearchKit is a valiant effort by Apple, and if its a hit with scientists, it could make mass medical research easier than ever.”

How do we define ‘easier’? Has Apple hit on a mainstream research app? How is ‘mass medical research’ in public health for example, done today and how may it change?

Will more people be able to participate in remote trials?

Will more people choose to share their well-being data and share ‘control’ phenotype data more in depth than in the past?

Are some groups under- or not-at-all represented?

How will we separate control of datasharing for direct care and for other secondary uses like research?

Quality: Will all data be good data or do we risk research projects drowning in a data tsunami of quantity not quality? Or will apps be able to target very specific trial data better than before?

How: One size will not fit all. How will data stored in wearables affect research in the UK? Will those effects differ between the UK and the US, and will app designs need different approaches due to the NHS long history and take into account single standards and be open? How will research take historical data into account if apps are all ‘now’? How will research based on that data be peer reviewed?

Where: And as we seek to close the digital divide here at home, what gulf may be opening up in the research done in public health, the hard to reach, and even between ‘the west’ and ‘developing’ countries?

In the UK will the digital postcode lottery affect care? Even with a wish for wifi in every part of the NHS estate, the digital differences are vast. Take a look at Salford – whose digital plans are worlds apart from my own Trust which has barely got rid of Lloyd George folders on trolleys.

Who: Or will in fact the divide not be by geography, but by accessibility based on wealth?  While NHS England talks about digital exclusion, you would hope they would be doing all they can to reduce it. However, the mental health apps announced just this week each have a price tag if ‘not available’ to you on the NHS.

Why: on what basis will decisions be made on who gets them prescribed and who pays for the,  where apps are to be made available for which area of diagnosis or treatment, or at all if the instructions are “to find out if it’s available in your area email xxx or call 020 xxx. Or you could ask your GP or healthcare professional.”

The highest intensity users of the NHS provision, are unlikely to be the greatest users of growing digital trends.

Rather the “worried well” would seem the ideal group who will be encouraged to stay away from professionals, self-care with self-paid support from high street pharmacies. How much could or will this measurably benefit the NHS, the individual and make lives better? As increasingly the population is risk stratified and grouped into manageable portions, will some be denied care based on data?

Or will the app providers be encouraged to promote their own products, make profits, benefit the UK plc regardless of actual cost and measurable benefits to patients?

In 2013, IMS Health reported that more than 43,000 health-related apps were available for download from the Apple iTunes app store. Of those, the IMS Institute found that only 16,275 apps are directly related to patient health and treatment, and there was much to be done to move health apps from novelty to mainstream.

Reactionary or Realistic – and where’s the Risks Assessment before NHS England launches even more approved apps?

At the same time as being exciting,  with this tempting smörgåsbord of shiny new apps comes a set of new risks which cannot responsibly be ignored. In patient safety, cyber security, and on what and who will be left out.

Given that basic data cannot in some places be shared between GP and hospital due for direct care to local lack of tech and the goal is another five years away, how real is the hype of the enormous impact of wearables going to be for the majority or at scale?

On digital participation projects: “Some of the work that has already been done by the Tinder Foundation, you take some of the examples here, with the Sikh community in  Leicester around diabetes, and parenting in other parts of the country, you can see that this is an agenda which can potentially get real quite quickly and can have quite a big impact.”
(Simon Stevens)

These statements, while each on different aspects of digital inclusion, by Simon Stevens on smartphones, and scale, and on consent by Tim Kelsey, are fundamentally bound together.

What will wearables mean for diagnostics, treatment and research in the NHS? For those who have and those who have not?

How will sharing data be managed for direct care and for other purposes?

What control will the patriarchy of the NHS reasonably expect to have over patients choice of app by any provider? Do most patients know at all, what effect their choice may have for their NHS care?

How will funding be divided into digital and non-digital, and be fair?

How will we maintain the principles and practice of a ‘free at the point of access’ digital service available to all in the NHS?

Will there really be a wearables revolution? Or has the NHS leadership just jumped on a bandwagon as yet without any direction?

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[Next: part three  – on consent – #NHSWDP 3: Wearables: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care?] 

[Previous: part one – #NHSWDP 1: Thoughts on Digital Participation and Health Literacy: Opportunities for engaging citizens in the NHS – including Simon Stevens full keynote speech]

#caredata, care.data, change management, leadership, mental health, NHS, NHS England

Thoughts on Digital Participation and Health Literacy: Opportunities for engaging citizens in the NHS [#NHSWDP 1]

“..smartphones […] the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

That’s what Simon Stevens said at a meeting on “digital participation and health literacy: opportunities for engaging citizens” in the National Health Service this week, at the King’s Fund in London.

It seemed a passing comment, but its enormity from the Chief Executive of the commissioning body for the NHS, made me catch my breath.

Other than inspiration from the brilliance of Helen Milner, Chief Executive of the Tinder Foundation – the only speaker who touched on the importance of language around digital participation – what did I take away from the meeting?

The full text of Simon Steven’s speech is below at the end of this post, but he didn’t elaborate further on this comment.

Where to start?

The first thing I took away to think about, was the impact of the statement. 

“the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond “

So I thought about that more in a separate post, part two.

The second, was on consent.

This tied into the statement by Tim Kelsey, Director of Patients and Information at NHS England. It seems that the era when consent will be king is fast approaching, and I thought about this more in part three.

The third key learning I had of the day, which almost everyone I met voiced to me was, that the “best bit of these events is the learnings outside the sessions, from each other. From other people you meet.”

That included Roger who we met via video. And GP Dr Ollie Hart. All the tweeps I’ve now met in real life, and as Roz said, didn’t disappoint. People with experience and expertise in their fields. All motivated to make things better and make things work, around digital, for people.

Really important when thinking about ‘digital’ it doesn’t necessarily mean remote or reduce the people-time involved.

Change happens through people. Not necessarily seen as ‘clients’ or ‘consumers’ or even ‘customers’. How human interaction is supported by or may be replaced by digital contact fascinates me.

My fourth learning? was about how to think about data collection and use in a personalised digital world.

Something which will be useful in my new lay role on the ADRN approvals panel (which I’m delighted to take on and pretty excited about).

Data collection is undergoing a slow but long term sea change, in content, access, expectations, security & use.

Where, for who, and from whom data is collected varies enormously. It’s going to vary even more in future if some will have free access to apps, to wifi, and others be digitally excluded.

For now, the overall effect is perhaps only ripples on the surface (like interruptions to long-term research projects due to HSCIC data stops after care.data outcry) but research direction, and currents of thought may shift fundamentally if how we collect data changes radically for even small pockets of society, or the ‘worried well’.

My fifth learning, was less a learning and more the triggering of lots of questions on wearables about which I want to learn more.

#digitalinclusion is clearly less about a narrow focus on apps than applied skills and online access.

But I came away wondering how apps will affect research and the NHS in the UK, and much more.

[Next: part two #NHSWDP 2: Smartphones: the single most important health treatment & diagnostic tool at our disposal – on wearables]

[And: part three #NHSWDP 3: Wearables & Consent: patients will ‘essentially manage their data as they wish’. What will this mean for diagnostics, treatment and research and why should we care?]

*****

Full text of the speech given by Simon Stevens, Keynote speaker:

“The reality is we all can see that we’ve got to change […] as part of that we have got to have more integrated services, between primary and specialist services, between physical and mental health services, and between health and social care services.

“And the guiding principle of that integration has got to be care that is personal, and coordinated around individuals, with leadership of communities and patient groups.

“There is no way that can happen without a strong, technological underpinning using the information revolution which is sweeping just about every other part of the economy.

“We are not unusual in this country in having a health sector which has been a little slower, in some respects, than many other parts of national life to take full advantage of that.

“We are not unusual, because that is the experience of health services in every industrialised country.

“We obviously have a huge opportunity, and have a comparative advantage in the way that the NHS is organised, to put that right.

“We know that 8 out of 10 adults are now online, we know that two thirds of people in this country have got smartphones which is going to be the single most important health treatment and diagnostic tool at our disposal over the coming decade and beyond.

“But we know we have got 6.4m people who are not.

“And so when you of course then get serious about who are those six and a half million people, many of them are our highest users of services with the greatest needs.

“So this is not an optional extra. This has got to be central about what the redesign of care looks like, with a fundamental power shift actually, in the way in which services are produced and co-produced.

“This agenda goes to the heart of what we’ve got to get right, not just on inequalities but around co-production of services and the welcome steps that have been taken by the organisations involved, I think that the point is obviously we have now got to scale this in a much more fundamental fashion, but when you look at the impact of what has already been achieved, and some of the work that has already been done by the Tinder Foundation, you take some of the examples here, with the Sikh community in  Leicester around diabetes, and parenting in other parts of the country, you can see that this is an agenda which can potentially get real quite quickly and can have quite a big impact.

“The early evaluation anyway indicates that about half of people involved say they are leading healthier lives on the back of it, 48% in healthy eating, a third do more physical activity, 72% say they have saved money or time.

“Given that we are often talking about resource poor, time poor communities, that is hugely impactful as well.

“So my role here today, I think is simply to underline the weight that we place on this, as NHS England nationally, to thank all of you for the engagement that you have been having with us, and to learn from the discussion we are about to have as what you see where you see key priorities and what you need from us.”

[March 18, 2015 at the event “Digital Participation and Health Literacy: Opportunities for engaging citizens” held at the King’s Fund, London]

 

#caredata, care.data, HSCIC, NHS England, transparency

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

#caredata, care.data, HES, NHS England, scope

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] https://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] https://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] https://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

 

human rights, mental health, NHS, NHS England

Burning questions on Detention Centre healthcare & welfare

A man deliberately set fire to his mattress and clothes, and was taken to hospital in Surrey on Jan 31st, two weeks ago.

He is one of 426 men held at Brook House, one of the immigration removal centres (IRCs) at Gatwick. After being treated for smoke inhalation he was returned later the same evening, according to a G4S spokesman.

Crawley’s West Sussex Fire & Rescue Service put out the fire, and had ventilated the smoke damaged cell before leaving, all in 30 minutes.

Clearly it did not come to much,  but why did a man feel the need to set fire to the few possessions he has, and what happens next?

The G4S media spokesman said last week in connection with the fire, he was unaware of any standard health assessment or any procedures for the care of men after these incidents.

In 2010, only one year after its opening, the HM Chief Inspector of Prisons report based on an announced visit at Brook House Immigration Removal Centre [3] labelled the Brook House IRC as fundamentally ‘an unsafe place’.

The inspectorate found in 2010 and again in 2013 that the mental health failings were serious. Should it not be realistic to expect standard practices should already have been put in place since, for their improvement?

What will the recent multi-million contract for healthcare at a number of detention centres awarded by NHS England to G4S and separately in prisons mean for standards and continuity of their NHS care, and will improvements be put in place which work?

The multinationals working in our UK justice and home office systems, G4S [which manages Brook House] and Serco, haven’t exactly got track records which are equal to the ethical expectations the public has in their roles.

They also operate in Australia where Ministers have taken a hardline approach in defiance of human rights asylum conventions.

One year ago today, twenty-three-year-old Reza Barati was killed in an Australian immigration detention centre on Manus Island. In August 2014, police have reportedly charged two guards working for former camp operator G4S with his murder. A parliamentary enquiry found the violence was foreseeable.

Another man, Hamid Kehazaei did not get taken from Manus to receive adequate medical treatment quickly enough due to paperwork delays, and died in December, the Guardian reported.

Are there warning signs that the provision in England is heading in the same way and not just for IRCs but for detention and prison across the UK?

Do people needing healthcare get taken offsite quickly enough when needed in England? How have they responded to deaths in detention?

In the UK, the IAP on Deaths in Custody has produced a comprehensive statistical breakdown of all recorded deaths in broad state custody settings between 1 January 2000 and 31 December 2010.

The report included a focus on the deaths of people detained under the Mental Health Act (MHA).

Children have died in detention and men during IRC removals.
[For more detail, see the section below, Questions on the Staffing and use of Force in care]

The care and the responsibility for these IRC-held men, women and children may not be of interest to everyone in the UK.

But as the expansion of private contractors becomes the norm, any family in England who finds someone they love in any non-HMP run English prison might be touched by the values of these providers.

Should we demand that equal ethical standards, transparency of targets and procedures, and the provision of physical and mental health care, be for all, as basic human rights?

Must our state keeps awarding massive contracts to these massive multinationals?

Will we, under the cuts of austerity, see situations deteriorate further in the UK, to the Australian standard?

Will we look back and wish we had acted sooner?

These issues are not new and are well documented

Lord David Ramsbotham GCB CBE, Her Majesty’s Chief Inspector of Prisons – December 1995 – August 2001 wrote the foreword in the 2008 report by the Birnberg Peirce & Partners, Medical Justice and the National Coalition of Anti-Deportation Campaigns  [Outsourcing abuse 2008] in which he identified:

“a most unfortunate attitude, adopted by officials towards issues surrounding asylum and immigration, described by the Commission as ‘a culture of disbelief’.”

It seems this culture of disbelief is allowed to continue.

Yet despite years of evidence, the February 2015 Home Office response by today’s government only accepts in part, some of the issues raised and recommendations in the Tavistock Institute Review [2] of IRC mental health care.

These include indefinite detention and the impacts on mental health, and a proposal of cultural change to speed up processing times.

As this is considered, I wonder will any change aimed at reducing indefinite detention manage to be designed in such a way as to also future-proof thorough and proper processing procedures?

In the meantime, detainees and prisoners are protesting via the few channels they have.  Self harm, starvation and setting things alight.

So what can we, the Public do?

If you think this matters but know little about it, we can get informed, or we can ask that our MPs intervene on our behalf.

We can support those who work or campaign in this area, like AVID [see on social media #Time4aTimeLimit and @DetentionForum

I wonder if those more informed, perhaps your local Red Cross or immigration volunteers, could read and consider responding to the Care Quality Commission (CQC) somewhat ‘informal’ consultation [p14] underway, on the approach to the CQC regulation in England?

This will affect how healthcare is regulated in IRCs. The closing date in March is unconfirmed.  Views are being taken now, in consultation via email: cqcinspectionchangeshj @ cqc.org.uk [1].

Joint working may be a good thing if it brings action to improve the health, care and welfare of the people in these institutions.

What it must not mean, is less frequent, independent, or less comprehensive reports by the HMIP which covers a wider area of inspection than CQC might.

Pregnant women, women who have been trafficked, torture victims: [added March 2: see Channel 4 on #Yarlswood] people are not getting the specialist support or care they should. Their carers and NHS staff are not universally getting specialist training they need.

Public pressure and transparency should support the campaign organisations who are familiar with these issues and demand change through MPs. There are big questions for IRCs whether people should be there at all, pregnant women and children even more so.

But specifically on health and welfare issues I would like to ask:

  • MPs: if they are aware already, of The Tavistock Institute Report [2],  government response, and ask for action, not only in IRCs but across all detention settings (incl. indefinite detention)
  • Ask: ‘is the parity of mental health delayed yet again, for people in prison and anyone in IRCs’? [ref the NHS Guidance to Mental Health Access  and Standards for 2015/16 from 12th February]
  • Ask: ‘What will the NHS England awarded multi-million contract for healthcare at a number of detention centres to G4S and separately in prisons mean for standards and continuity of their NHS care?’
  • Ask: ‘What training does NHS England offer healthcare staff who work with these people and how is it universally applied?’
  • Ask: ‘How is the provision of quality medical care being assessed and well documented changes needed actually acted upon’?
  • Ask: why are reports [as outlined in a letter from John Vine CBE QPM] taking so long to action? “The majority of my reports since January 2014 have been subject to significant delays between submission to the Home Secretary and being laid in parliament”
  • Ask: ‘Why is it deemed NOT in the public interest to ensure that all the providers’ procedures, protocols, the expected standards they operate to, and clear accountability for when they do not,  are transparent and in the public domain?’

The state may have, in places, outsourced the service, but it cannot outsource its responsibilities.

In my research to date, the question that I am left with overwhelmingly is this:

“As a provider of punitive systems, can healthcare and welfare can be delivered “with an equal sense of fairness” through the same outsourced service?”

Are the steps Theresa May refers to in the recently announced Shaw review, an indicator of real change?

The reports and reviews over the last ten years listed above seem to have made no difference to the unknown man, who set fire to his stuff, on the Saturday evening of January 31st 2015 at Brook House.

Parliament is well aware of many failings already. [9] and there are known others which are yet to be made public. [10]

Since 2010 through June 2013 the HMIP reports clearly identify issues but what follow though is made and who is accountable for it?

While there are solutions needed to big philosophical questions that may trouble our conscience, like ‘what kind of country do we want to be to unaccompanied children escaping life threatening situations?’ equally big political questions continue to challenge: ‘How and why do we continue to engage multinationals with unanswered ethical questions on financial and humanitarian practices?’ ‘What hope for refugees and asylum seekers in Greece and what are the wider EU implications, if EU political and economic next steps are unclear?’

For now, for many people who want to take action, it is the small and practical which can be done, in practice. Often small acts which make a difference in the silent and unreported space between desperation and hope, for each person,  each day.  Supporting our NHS staff to ensure they get the specialist situation training they want and continue their invaluable roles in these places. Supporting the visitors’ volunteer groups. You might consider joining them.

Call on our MPs to demand change now, not review after review.

More reviews, reports, consultations and new legislation bills, seem to run in parallel with little, at least little public regard to one another and ignoring the continuity of their calls for change.

They could make a difference with cohesion between the responses and if accountable action were taken.

That needs compunction and oversight of accountable follow up.

Until however long the next review takes to report, and any action is put in place, we might see another fire, for another person; in another prison, or another young offender institution, or another detention centre.

It might be in one near you. It might affect someone you love. It may be a child.

It’s not over dramatic to say: it might be a matter of life or death.

****

If you are interested in more detail, read on below after the continue reading break:

A. What happens to someone at an IRC after a fire like this?
B. Review of Welfare & Mental Health at IRCs incl. detention time
C. Brook House, Gatwick Cluster
D. Who is responsible for the healthcare offered at IRCs? The role of NHS England and the CQC
E. Questions on Staffing and use of Force in care
F. Another Review, another Report? Will there be Change?
Conclusion: Burning questions on Immigration Removal Centre healthcare

References

Continue reading Burning questions on Detention Centre healthcare & welfare →

care.data, change management, engagement, NHS England

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.

#caredata, care.data, health, HSCIC, NHS England

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:  https://jenpersson.com/care-data-2015-list/

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

#caredata, care.data, commercial, communications, engagement, genomics, NHS, NHS England, politics

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

#caredata, care.data, NHS England

A care.data Christmas carol

“Marley was dead: to begin with. There is no doubt whatever about that.” [A Christmas Carol, Charles Dickens, 1843]

“Is care.data dead?” I was asked after our children’s nativity today, “what happened to that GP record sharing project?”  The local priest, you may think of all people, wondered what had become of the news stories we had discussed at Easter.

Not dead, I assured him, though it was suggested recently that the Caldicott led Independent Information Governance Oversight Panel (IIGOP) report [1], would be the final nail in the coffin of the past approach [2], and would spell doom ahead in any care.data future were the programme not to follow its recommendations.

I told him the story of the care.data year.

So, are you sitting comfortably? For Christmas is a time of storytelling. At its heart, the story of a birth, which has been handed down through generations.

But here, I borrow from the most famous of all English Christmas stories, a Christmas Carol, by Charles Dickens from 1843. Let us begin.

“Come in!” exclaimed the Ghost. “Come in! and know me better, man!”

The ghost of care.data past rattled its chains and brought no joy in 2014, haunting the current programme with news of past data sharing practices.  At the start of the year, much was made of the 25 years of past use of our health records with third parties about which the public had never been told nor asked for permission, we were told there had never been breaches [3], and there was surprise expressed by NHS England leadership at why care.data, the plan to extract GP records now in addition, should have struck such a nerve in the public. Then they actually ran an audit that told the full story.

Various reports have since tried to vanquish those ghosts which have haunted the rollout of care.data in the past year. Sir Nick Partridge in May led the Review of Data Releases by the NHS IC which looked back at health data sharing of the existing HSCIC held data, and in November, he examined the progress up to the present.[4]  The extent of third party releases including actuarial firms, organisations in the US and China, and commercial re-use was a complete surprise to the public and, his report appeared to suggest to many like him in management as well.

The IIGOP Report published last week on the care.data Programme Board looks to the future. It sets out a thorough set of specific recommendations, questions and tests to meet before it could be reasonable to proceed to a data extraction in the care.data pilot.

The first independent report on care.data, prepared and released under the oversight of the new Data Guardian, Dame Fiona Caldicott, it also captures many sensible and practical questions raised by patients at events all year.

In some ways, whilst sad to see what so many have said was needed has only come to be addressed by an independent body rather than NHS England, recognising the current weaknesses can only be seen as positive to bring about changes. It may have a hope of restoring public and professional trust.

What next steps will come from this for a care.data relaunch by NHS England, and when in future, remain to be seen. [Updates may be here, or here or sometimes here].

Perhaps if the current course of actions is averted, we may not ‘see a vacant seat’ if it all falls apart in 2015 after all.

The CCGs have been given a huge responsibility which is not of their making, if NHS England continues to pilot under CCG-steered rollouts.[5]

One would hope that given the right amount of time needed to manage this change process, and  with the right supporting skills and tools for the practicalities, the care.data programme will take a changed form in the year ahead. It may yet be saved.

But it does seem often that timing is of the essence, and we move from one artificial deadline to the next. The public and GPs wait without the security and confidence of a realistic schedule.  Waiting we wonder if we will reach the next chime due, or the next ghost to haunt the programme will arrive and cause new fright.

It’s no cure all, but it appears the IIGOP has given the programme the gift of one last wonderful opportunity to get this right. It’s requirements are sizeable and will take time to execute sensibly. The report illuminates a future path for progress and shows what must be altered today, to avoid the future it predicts otherwise.

The outcome of care.data rests in the hands of the DH and NHS England. Dependent on the public and professions seeing change.

As Scrooge learns:

“But if the courses be departed from, the ends will change.” [A Christmas Carol, Charles Dickens, 1843]

Ignore the wisdom of the ghosts at your peril. For a changed future outcome,  the actions of the present must change first.

So, humour me awhile, and let’s consider some of the bigger themes in the care.data Christmas carol that CCGs may wish to consider as it deals with preparing for pathfinder pilots…

Chapter 1. “This boy is Ignorance. This girl is Want. Beware them both, and all of their degree, but most of all beware this boy, for on his brow I see that written which is Doom, unless the writing be erased…” [A Christmas Carol, Charles Dickens, 1843]”

What information is getting through from listening events? [6]

There should be no excuse for poverty in the world today, and whilst in my bigger picture wish list, to deal with want would come first, in my care.data Christmas carol list, it is ignorance which cannot be tolerated.

There is no excuse for ignorance, for lack of information, or wondering what questions needed answers to date at the care.data programme board of NHS England.

“How do we explain care.data vs SCR”, “Can you tell me exactly who will access my data?”, “If future purposes change and I want the opportunity to withdraw & opt out, how will I get told?”

The IIGOP report states clearly the current gaps in knowledge and what must be done to fill them, for various parties.

Together with two other major reports this year on health data sharing and care.data: Partridge, and the November 2014 APPG report [7], professional bodies have provided plenty of information and asked plenty of questions which no one now can ignore.

Misplaced statements that there have been no breaches do nothing for public confidence, when later reports show that is ignorant or inaccurate. Big Brother Watch published its report into NHS Data Breaches in November. It found that data security is an ongoing problem, and that over the last four years patient confidentiality had been breached at least 7,255 times.[8]

Facts and answers now need to address the IIGOP report in depth, and meet patients’ past questions, to lay to rest some of the issues which have haunted the programme in the press; unexpected commercial uses, and re-use of data through commercial data licenses, for example.

Adequate time must be given to the CCGs, GPs and patients to be fully informed of the programme and the choice(s) on offer. This is not an IT rollout, but a series of process changes, which need human understanding and acceptance. “What’s in it for me?” versus “What risks may harm me?” need thinking time to be fairly presented and the patient choice collected.

To avoid potential doom whether it be significant opt out or failure to meet fair processing leaving GPs at risk [9], to adequately communicate through effective education, will take effort.

Chapter 2. “Every one of them wore chains like Marley’s Ghost; some few (they might be guilty governments) were linked together; none were free.” [A Christmas Carol, Charles Dickens, 1843]

Understand the links of who, why and what, of data sharing: 

The decision making, the process steps, how patients are told of changes in the programme today and will be in future, how the public perceives their data is exploited, are all linked together by very simply: who stores and uses the data, and for what purposes.

For the programme, it would be wise to understand the importance of the interaction of these parts of the process. Linked appropriately together, and working well, trust will keep the system together.  It fails, and no matter how good the technology is, without trust, the system will fail to deliver its expectations. If too many may opt out, or opt out disproportionately in certain population segments it would harm data quality.

When at the HSCIC data sharing discussion in July it was clear some data recipients were yet to grasp this interdependency, and the effect their attitudes to data use have on each other.

If one [class of] data recipient in future receives or uses data inappropriately, it will harm public faith in all users.

For patients, to have true transparency I believe care.data should be explaining exactly how the data linkage system [10] works, and all the other silos of data it already holds. The personal demographics service, stores a whole set of personal data of which the public maybe unaware, and yet may find used to link data collected from all sorts of parts of health and social care. If NHS data sharing is to be explained, do it all. To avoid doing this, will merely store up a future risk of yet more surprises for patients and damage trust further.

Chapter 3: “I have seen your nobler aspirations fall off one by one, until the master-passion, Gain, engrosses you.” [A Christmas Carol, Charles Dickens, 1843]

Commercial use of data will be detrimental to public confidence.

By looking ahead to see what the ghost of care.data future might bring, the forecast doom of the present course, may yet be avoided.

As patients told NHS England at the Open House event [11], we’re fed up with commercial data mining, and the same was reflected by a representative group of citizens in various polls this year.[12]

How is the non-NHS data world changing? What of the upcoming EU data legislation?  How does commercial data industry itself perceive legislation in the UK?

In the 2013 Experian keynote address the Nectar Head of Customer Marketing noted, “legislation has not kept up to speed with where we are going’ [16:57] [13]

Perhaps it is opportune to reflect on one of the oldest Biblical themes at Christmas, choose which master you serve.

Back at NHS England and the IC, discussions in April 2013 seek to ‘create a vibrant market of data intermediaries , for example.

Which purposes should this serve? The health of the nation, or the wealth of the nation? Can one justly serve both equally?

“You fear the world too much,” she answered, gently. “All your other hopes have merged into the hope of being beyond the chance of its sordid reproach. I have seen your nobler aspirations fall off one by one, until the master-passion, Gain, engrosses you.” [A Christmas Carol, Charles Dickens, 1843]

It would appear to patients that by  mixing commercial purposes in with legitimate health, and health research purposes,  the data commissioning system has created its own downfall.[14]

The purposes whilst amended in the Care Act 2014, are so broad as to leave too much commercial use open under ‘purposes of health’. How would that rule out pharmaceutical marketing for example?

For many patients, use outside their own healthcare and its provision and planning is a real hot chestnut.

If patients are in disagreement over commercial uses for example, they have no choice but to opt out of research uses as well. This multi-option choice, or the removal of commercial use needs addressed.

If research wants more data, we would do well to define and restrict commercial use in legislation, much more specifically.

Chapter 4 : “You wish to be anonymous?” [a Christmas Carol, 1843]

There has been much disagreement and misunderstanding of how data will be used, anonymous or what non-identifiable really means.

Media reporting at the start of the year frequently focused on the collection of care.data as ‘anonymous data.’  Bah, humbug! that is factually incorrect.

CCGs need to make sure that their own staff understanding is correct, as well as passing on information if they are to be intermediaries on behalf of NHS England. At CCG meetings I attended, many staff confused care.data with direct care/SCR.

The default position if patients do nothing is the sharing of date of birth, full postcode, gender and ethnicity, and the NHS number is a unique identifier. Plus all the other codes and conditions.

It is still unclear how the data which has already been extracted without consent or fair processing, can be controlled by patients who may not wish to share identifiable data from their hospital visits, mental or community health.

bbc_notdentifiable

If patients can’t control data already held at HSCIC, why will they want to share more additional data, from primary care?

Learning from looking back on 2014

My own looking back on my care.data journey in 2014 is here.

medConfidential has a rather good summary of the year here. [15]

“Spirit,” said Scrooge submissively, “conduct me where you will. I went forth last night on compulsion, and I learnt a lesson which is working now. To-night, if you have aught to teach me, let me profit by it.” [A Christmas Carol, Charles Dickens, 1843]

From past lessons learned in 2014, one would hope the future rollout will profit from them and take the time, and use the tools it needs, to get to a brighter future.

Looking ahead: news for 2015 came at the end of the year.

Sir Partridge in the Telegraph, November 27 he said:

“We must make sure there are no surprises for the public about how their information is being used, that they have a choice in this and that we are honest about the balance of risk. Every single one of us has a part to play in making sure we get this right…

“The HSCIC is still improving its practices. It is also endeavouring to increase its transparency.”

The November 2014 APPG report said, what everyone appears to agree on:

“the public had been inadequately consulted in the early stages of the Care.data programme and that it was therefore correct to halt the programme to allow further public consultation.” [APPG report]

It goes on to say, “Organisations providing health or social care services must succeed in both respects [examining the Public Interest] if they are not to fail the people that they exist to serve,” and with that in mind a Public Benefits Plan should be drawn up, to support public transparency.

Public transparency would be improved by publishing the public’s questions from multiple listening events at which attendees were promised answers and follow up. The conversations did not always ask easy questions, but all the more reason to address them publicly for all; it will make the programme better.

So, if the care.data programme learns from that which has haunted care.data in the past year, and NHS England now grapples with all the questions and criteria of the IIGOP report, and increases its public transparency, stakeholders can look to the future with a renewed hope. But only if there is change made to the present course of actions.

“Scrooge was at first inclined to be surprised that the Spirit should attach importance to conversations apparently so trivial; feeling assured that they must have some hidden purpose.” [A Christmas Carol]

 What must surely happen now, is to use the IIGOP report as a basis of lessons learned. To see gaps in knowledge, and to build processes and procedures which set up the future. Some of these must be at national level, such as ‘How patients will be informed of future scope change’ so CCGs will need answers from NHS England even if pilots should be ‘co-produced’.
Quite frankly, only muppets would not want to wait and do all this in all the appropriate time needed. The coming General Election is perhaps seen as a key reason to artificially rush it through. But at what cost? Who is the programme for, party politics or the public good?

“What do you think of the show so far?”

Clearly the National Data Guardian and IIGOP, the APPG and others making many wise recommendations, find the approach so far lacking. To carry on as is, will bring predictable doom. But by using the IIGOP report insights, there is the hope that the outcomes of the current path may yet be avoided.

Which version of the care.data future will the NHS England Patients and Information Directorate choose to follow, and invite the CCGs to join them on, writing the next chapter of the care.data story in 2015?

“No space of regret can make amends for one life’s opportunity misused.” [A Christmas Carol, Charles Dickens, 1843]

***

Let’s hope 2015 is a good year, that the wish list of questions finds answers, and let’s hope there are no more care.data surprises.

Thank you for all the kind blog comments and questions I’ve received over the last year. I hope it helps keep patients’ voice heard. For all those or their representatives I have met and spoken with in the last year who have no voice at the table; the homeless, the travellers, the women and children in refuges, those concerned with public stigma, we must continue to challenge so their datasharing is, in the words of others; safe, consensual and transparent.

“I HAVE endeavoured in this Ghostly little book, to raise the Ghost of an Idea, which shall not put my readers out of humour with themselves, with each other, with the season, or with me. May it haunt their houses pleasantly, and no one wish to lay it.
Their faithful Friend and Servant,
C. D.“

Now; let’s get back to the present today:

“What’s to-day, my fine fellow?” said Scrooge.

“To-day!” replied the boy. “Why, Christmas Day.”

“Merry Christmas,  and so, as Tiny Tim observed, God bless Us, Every One!”

  [A Christmas Carol, Charles Dickens, 1843]

***

Image from a Muppets Christmas Carol, 1992

References:

[1] The IIGOP report https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/389219/IIGOP_care.data.pdf

[2] EHI ‘Care.data Review Raises Questions‘ http://www.ehi.co.uk/news/ehi/9808/care.data-review-raises-questions

[3] BBC Radio 4, February 4 2014 http://www.bbc.co.uk/programmes/p01rmpdy

[4] Nov 2014, Progress of HSCIC data sharing review by Sir Nick Partridge https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/380042/HSCIC_Report_Summary_of_progress_261114_FINAL.pdf

[5] 7 Oct 2014, CCGs to help deliver care.data pilots http://www.england.nhs.uk/2014/10/07/ccgs-care-data-programme/

[6] What information is being heard at Listening events? https://jenpersson.com/pathfinder/

[7]The APPG Report – Nov 2014 – http://www.patients-association.com/Portals/0/APPG%20Report%20on%20Care%20data.pdf

[8] Report into NHS Data breaches http://www.bigbrotherwatch.org.uk/wp-content/uploads/2014/11/EMBARGO-0001-FRIDAY-14-NOVEMBER-BBW-NHS-Data-Breaches-Report.pdf

[9] on GP indemnity: care.data MPS advice to members http://www.medicalprotection.org/uk/membership-indemnity-updates/care.data

[10] The data linkage service http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf

[11] The Open House June 2014, public questions https://jenpersson.com/care-data-communications-core-concepts-part-two/

[12] Privacy and Personal Data IPSOS Mori poll https://www.ipsos-mori.com/researchpublications/researcharchive/3407/Privacy-and-personal-data.aspx

[13] 2013 Experian keynote address the Nectar Head of Customer Marketing

[14] care.data downfall parody http://paulbernal.wordpress.com/2014/02/25/tim-kelsey-discovers-care-data-is-in-trouble/

[15] medConfidential bulletin https://medconfidential.org/2014/medconfidential-bulletin-19-december-2014/