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George and the Chinese Dragon. Public spending and the cost of dignity.

George Osborne has told departments to prepare plans for cuts of 25% and of 40% in non ring-fenced funding. What sacrifices will he ask society to make if public spending is to be further cut back?

The percentage of people wearing pristine white trainers was  unusually high in the international hotel chain’s breakfast room.

Most of the men fetching two adult breakfasts from the vast buffet wore cream coloured chinos, and button down shirts, and sported  standardised haircuts with hints of silver. Stylish women sat at  impeccable tables, cradling  babies in pink hats or spoon feeding small children.

On a busy street in downtown Guangzhou close to the Chinese embassy, the hotel was popular with American parents-to-be.

My  colleague explained that her sadness over thousands of Chinese daughters exported from a one-child policy nation in 2005 was countered by the hope that loving foreign families were found for them.

She repeated with dignity, party mantras and explanations drilled at school. She has good job, (but still she could not afford children). Too little land, too few schools, and healthcare too expensive. She sighed. Her eyes lit up as she looked at my bump and asked if I knew “girl or boy?” If it were a girl, she added, how beautiful she would be with large open eyes. We laughed about the contradictory artificial stereotypes of beauty, from East and West, each nation wanting what the other did not have.

Ten tears later in 2015, British Ministers have been drawing on China often recently, as a model for us to follow; in health, education and for the economy. Seeking something they think we do not have. Seeking to instill ‘discipline, hard-working, economy-first’ spin.

At the recent ResearchEd conference, Nick Gibb, [1] Minister of State at the Department for Education, talked about the BBC documentary “Are Our Kids Tough Enough” for several minutes and the positive values of the Chinese and its education system. It supposedly triggered ‘a global debate’ when British pupils experienced “the harsh discipline of a Chinese classroom”.

The Global Times praised the  First Minister Mr. Osborne as “the first Western official in recent years who focused on business potential rather than raising a magnifying glass to the ‘human rights issue” during his recent visit [2] when he put economic growth first.

Jeremy Hunt, Secretary of State for Health, was quoted at the political party conference  saying that he saw tax cut changes necessary as a cultural shift.  He suggested we should adopt the ‘hardworking’ character of the Chinese.

An attribute that is as artificial as it is inane.

Collective efforts over the last year or more, to project ‘hard-working’ as a measure of contribution to UK society into politics has become more concentrated, especially around the election. People who are not working, are undermined by statements inferring the less productive for the nation, the less value someone has as a person. Comments are repeated in a sustained drip feed, from Lord Freud’s remarks a year ago that disabled workers were not worth the full wage, to Hancock’s recent revelation that the decision to not apply the new minimum wage to the under 25s from 2016 “was an active policy choice.”  Mr. Hunt spoke about dignity being self-earned, not dependent on richness per se, but being self-made.

“If that £16,500 is either a high proportion or entirely through the benefit system you are trapped. It matters if you are earning that yourself, because if you are earning it yourself you are independent and that is the first step towards self-respect.”

This choice to value some people’s work less than others and acceptance of spin, is concerning.

What values are Ministers suggesting we adopt in the relentless drive for economic growth? [3] When our Ministers ignore human rights and laud Chinese values in a bid to be seen as an accepting trading partner, I wonder at what cost to our international integrity?

Simple things we take for granted such as unimpeded internet  access are not available in China. In Chinese society, hard working is not seen as such a positive value. It is a tolerated norm, and sometimes an imposed one at that, where parents leave their child with grandparents in the countryside and visit twice a year on leave from their city-based jobs. Our Ministers’ version of hardworking Chinese is idyllic spin compared with reality.

China is about to launch a scheme to measure sincerity and how each citizen compares with others in terms of compliance and dissent. Using people’s social media data to determine their ‘worth’ is an ominous prospect.

Mark Kitto from 2012 on why you’ll never be Chinese is a great read. I agree, “there are hundreds of well-rounded, wise Chinese people with a modern world view, people who could, and would willingly, help their motherland face the issues that are growing into state-shaking problems .”

Despite such institutional issues, Mr. Osborne appears to have an open door for deals with the Chinese state. Few people missed the announcements he made in China that HS2 will likely be built by Chinese investors, despite home grown opposition. Ministers and EDF have reportedly agreed on a controversial £25bn development of Hinkley Point C, nuclear plant, with most of upfront costs provided by Chinese companies, although “we are the builders.” [4]

Large parts of utilities’ infrastructure is founded on Chinese sourced spending in the UK it’s hard to see who ‘we’ are meant to be. [5] And that infrastructure is a two-way trade. Just as Chinese money has bought many of our previously publicly owned utilities, we have sold a staggeringly long list of security related items to the Chinese state.

In July 2014 the four House of Commons Select Committees: “repeated their previous Recommendation that the Government should apply significantly more cautious judgements when considering arms export licence applications for goods to authoritarian regimes which might be used for internal repression.”  [6]

UK to China exports
Chris Patten, former Hong Kong Governor,  criticised Osborne’s lax attitude to human rights but individual and collective  criticism appear to go unheard.

This perhaps is one measure of British economic growth at all costs. Not only is Britain supplying equipment that might be used for internal repression but the Minister appears to have adopted a singularly authoritarian attitude and democratic legitimacy of the Committees has been ignored. That is concerning.

The packaging of how upcoming cuts will be presented is clear.  We will find out what “hard working families” means to the Treasury. We need to work harder, like the Chinese, and through this approach, we will earn our dignity. No doubt rebuilding Britain, on great British values. Welfare will continue to be labelled as benefits, and with it, a value judgement on economic productivity equated with human worth. Cutting welfare, will be packaged as helping those people to help themselves out of self inflicted ‘bad’ situations, in which they have lost their self worth or found an easy ‘lifestyle choice’.

As welfare spending is reduced, its percentage spend with big service providers has risen after reforms, and private companies profit where money was once recycled in the state system. There is a glaring gap in evidence for some of these decisions taken.

What is next? If for example, universal benefits such as Universal Infant Free School Meals are cut, it will take food literally from the mouths of babes, in families who cannot afford to lose hot school dinners, living in poverty but not qualifying for welfare. The policy may be flawed because Free School Meals based on pupil premium entitlement does not cater for all who need it, but catering for none of them is not an improvement.

Ministers focus the arguments of worth and value around the individual. Doctors have been told to work harder. Schools have been told to offer more childcare to enable parents to work harder. How much harder can we really expect people to work? Is the Treasury’s vision is for us all to work more to pay more taxes? It is flawed if by adopting the political aim, the vast majority of people take home little more pay and sacrifice spare time with our friends and loved ones, running our health into the ground as a result.

The Chinese have a proverb that shows a wisdom missing from Ministers’ recent comments: “Time is money, and it is difficult for one to use money to get time.”

I often remember the hotel breakfast room, and wonder how many mothers, in how many in cities in China miss their daughters, whom they could not afford to keep, through fear of the potential effect. How many young men live without women in their lives who would want to, but find the gender imbalance a barrier to meeting someone. How many are struggling to care for elderly parents.

Not all costs can be measured in money.

The grandmother I met on the station platform last Wednesday had looked after her grandchild for half the day and has him overnight weekdays, so that Mum can first sleep and then work a night shift stacking shelves. That’s her daughter’s second shift of the day. She hardly sees her son.  The husband works the shelf-stacking third shift to supplement his income as a mechanic.

That is a real British family.

Those parents can’t work any harder. Their family is already at breaking point. They take no state welfare.  They don’t qualify for any support.

Must we be so driven to become ‘hard working families’ that our children will barely know their parents? Are hungry pupils to make do as best they can at lunchtime? Are these side effects children must be prepared to pay if their parents work ever harder to earn enough to live and earn their ‘dignity’ as defined by the Secretary of State for health?

Dignity is surely inherent in being human. Not something you earn by what you do. At the heart of human rights is the belief that everybody should be treated equally and with dignity – no matter what their circumstances.

If we adopt the Ministers’ be-like-the-Chinese mantra, and accept human dignity is something that must be earned, we should ask now what price have they put on it?

MPs must slay the dragon of spin and demand transparency of the total welfare budget and government spend with its delivery providers. There is a high public cost of further public spending cuts. In order to justify them, it is not the public who must work harder, but the Treasury, in order to deliver a transparent business case what the further sacrifices of ‘hard working families’ will achieve.

 

###

[1] ResearchEd conference, Nick Gibb, Minister of State at the Department for Education

[2] New Statesman

[3] https://www.opendemocracy.net/ournhs/jen-persson/why-is-government-putting-health-watchdogs-on-leash-of-%E2%80%98promoting-economic-growth

[4] The Sun: George Osborne party conference speech with 25 mentions of builders: “We are the builders”, said Mr. Osborne.

[5] Arms exports to authoritarian regimes and countries of concern worldwide The Committees

[6] The Drum: Li Ka Shing and British investment

[image: Wassily Kandinsky ca 1911, George and the Dragon]

The Politics of Envy

This week the Minister for Life Sciences George Freeman MP caused some furore in the Mirror and wider media, for having said, “the politics of envy” in Parliament.

The paper reported that the Labour frontbencher Stella Creasy said she was shocked:

“Following the law isn’t the politics of envy, it’s the politics of justice.”

It was in a debate on the minimum wage, in response to questions from other MPs why so few firms had been prosecuted since 2010, for not paying the legal minimum wage requirements.

Nine firms had been charged for non-compliance since 2010:

He said: “Prosecutions may satisfy the politics of envy of the Opposition, but they are not the best mechanism to drive compliance.”

What a contrast with Mr Freeman’s remarks I saw first hand in prosecutions at the Magistrate’s Courts last week.

I saw a 32 year old man prosecuted and told to pay £178 in fines and costs, for stealing a £13.99 bottle of vodka from Aldi.

A young builder who would have the same, £178 in fines and costs, deducted weekly from his benefits, prosecuted for a 3am drunken lunge which the defendant can’t remember, and missed its mark.

A 15 year-old who without lawyer, parents or having read the paperwork on his charges, pleaded guilty in an adult court to stealing a bicycle wheel and then had to wait around on the off chance a juvenille trained magistrate could hear the whole thing again, to sentence him.

A homeless man pleaded guilty to handling a set of stolen hair straighteners. He needed healthcare, not prosecution.

EDF was in getting court orders for forced entry to homes which would be cut off for non-payment of energy bills.

If “prosecutions are not the best mechanism to drive compliance” for big firms who exploit their staff, why is prosecution the mechanism we use every single day to punish the weakest in society?

It was a sad procession of petty crimes driven, not by envy, but by desperation – homelessness, unemployment and alcoholism.

Some defendants were grumpy, most bashful, and quite clearly, none were happy. There was not one of them who showed any hope.

The teenager looked fed up with the system, and looking him in the eye, I saw someone the system has clearly already let down.

In society which is so imbalanced, and with MPs earning well, some having second jobs, you cannot blame some people for feeling that MPs don’t deserve our trust. Or that some appear to have little empathy for those who have rarely have a positive bank balance.

People sanctioned for reasons few understand, prosecuted when life  gets out of control. Neither helps the person who is punished.

What jobs are these people being offered – or are we asking those who cannot work to do so – when the number of those sanctioned for not ‘participating in work related activity’ has steadily increased?

sanctions

 

 

Wouldn’t it be nice if  we could find a smart solution to prosecutions, when I agree with George, “they are clearly not the best mechanism to drive compliance”? albeit, in a different context.

Can we stop punishing the poor by making them poorer?

While I am sure it’s a worthy small business to champion, Mr Freeman’s twitter feed says he was popping in to buy a jumper at the end of February – the only one shown on the shop website is the Merino and Alpaca Roll Neck priced at £189.00.

I’m not making a personal criticism or envious of being able to buy a luxury sweater without apparent much need to budget for it.  Mr Freeman’s business background and investments speak for themselves.

But it does illustrate the enormous gulf between the everyday of some elected representatives and electorate. His words underpin it.

The use of these soundbites by MPs, is common across the board, but it is harmful to debate and stops many issues being properly discussed. It avoids further discussion, by changing the subject.

It’s not the first time we’ve seen this turn of phrase. Looking back to last summer, Owen Jones wrote about it in the Guardian.

I find I have mixed reactions to Jones’ views, but on the politics of envy, he summed up rather well:

“The left, goes this narrative, is really driven by envy and spite towards those of pampered backgrounds.

“The “politics of envy” accusation attempts to shut down even the mildest attempts at social justice. It materialises when Labour suggests a 50% top rate of tax for all earnings above £150,000. The right screams “politics of envy” at a mansion tax – while championing the bedroom tax, which falls on the shoulders of disabled people and the poor.”

The convenient soundbite turned a debate on fair wages into yet another political counter, the defensive move became an attack.

But it’s an attack on the wrong things if we want a society which works, in all senses of the word.

Envy has nothing to do with social justice and fairness, and in this case, as Stella Creasy pointed out,  was about following the law.

The application of the law designed to protect workers from exploitation and to make sure it’s financially worth working at all.

It’s a safeguard which isn’t even aiming for best practices, but protecting the majority of workers from the worst.

It should be part of wider employment measures which also protect these kinds of extreme exploitation becoming more widespread.

Let’s face it, the minimum wage rates, aren’t decent living wages.

As we approach the General Election, I hope candidates will look in the mirror and ask themselves, why do you want to stand?

Who do you represent, serve and what kind of society do you want to live in? What society will your own and my children inherit?

The ‘politics of envy’ talk, only poisons the real subjects to debate by turning them into party political soundbites, when what we need are real solutions to real social issues.

Wouldn’t it be nice if this election campaign could address them with substance?

What would fair wages pay and how could we achieve them?

What would a truly just Justice System look like?

Now that, would be a leaders’ debate worth having.

 

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

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? http://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 http://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/

 

That their sighs should not blow there. My hope in haiku.

No sanctuary
but for a stone of stumbling
a rock of offence.

Houses of Israel
mercy from a gin and snare.
All your peoples

broken bodies strewn
bloodied ashen dust blows hot
bomb blasted towers

children, children lost.
Images. Lives left ruins
ragdolls photographs.

And after these things
I saw four angels standing
on the four corners of Earth:

no more dirt tunnels
no din of drone nor ambulance
no burial wail

holding the four winds
that their sighs should not blow there.
In peace, revelation.

 

(AFP Photo / Mohammed Abed)

Refs: Isaiah 8:14 / Revelations 7:1

Happy [belated] Birthday Kafka

Yesterday, July 3rd, was Kafka’s birthday. I started to write about him, and fell asleep with a book in my hand, waking in Kafkaesque style this morning not knowing where I was or why. But thank goodness, I did not wake up as a beetle. [1]

The overly used descriptor Kafkaesque has more recently come to take  on a generic meaning, and his name  associated with a dark view of the state and surveillance. [2]  I wonder what he would have made of it?

The surveillance state is more contemporary than ever in mainstream thought, since Snowden, a year ago. We can look at The Trial, in which the protagonist is accused of an unknown crime, under assumed guilt and secrecy surrounding the process and reflect on the latest moves towards a secret court in the UK. In ‘The Great Wall of China‘ Kafka considered both points of the debate how to protect the People from outsiders, the Barbarians. As we see security at airports tightened today against an invisible threat, its central theme as valid today as in the 1920s, exploring the authority’s exploitation of fear and uncertainty over what constitutes a nation and what should be defended. In Das Schloss ‘the Castle‘ the authorities are drowning in documents, but cannot find the one which is relevant to the accused. Kafka questions the purpose of massive data gathering when the authorities appear not use the documents they collect. Both the latter stories mentioned in Alan Greenblatt’s article, on the Surveillance Society. [3]

His work is perhaps more relevant than ever.

As a Germanist, his work featured strongly in my studies, but I appreciate it more now, and am currently working on a project which is based in the time of his life (1883 -1924) and into the second world war.

It was both a fascinating and demanding time and place to live.

He was a German speaker living in what is now, the Czech Republic. The issues of identity and belonging are everyday ones for the residents like him, in a country whose borders were fluid and changing. Whose government switched the state language between Czech and German, and issued new passports in his lifetime, more than once, and in state institutions in which it was dictated how many employees should be of which – Czech or German – ethic origin. It is little spoken of today, but the fifty years before WWII set the stage for the struggle of ethnicity and its horrific consequence for millions of ordinary citizens in post war Czechoslovakia and its neighbours. The resulting forced migrations [4] of 3 million ethnic Germans from the Sudetenland alone, and the deaths of a disputed number in the region of half a million, and up to two million more who disappeared, is a little talked of consequence of the war and its preceding years.

He died before this, in 1924. His best known works are those in which the State, power, identity and emotional struggles are entwined in dark and often unexpected situations.

His work is ever popular, and his many themes, quotes and associated artwork are widely used. His concepts contemporary.

He was reportedly an avid reader, and advocated reading books which challenge:

“I think we ought to read only the kind of books that wound and stab us. If the book we are reading doesn’t wake us up with a blow on the head, what are we reading it for?”  

– from a letter to Oskar Pollak (January 27, 1904)

He inspires me to keep writing mine.

 

******

Artwork from the Schocken/Pantheon Kafka library, cover designer Peter Mendelsund

[1] Metamorphasis: http://www.sparknotes.com/lit/metamorph/ – one of Kafka’s best known works

[2] Salon’s view of the NSA’s Internet surveillance program and how it uses Section 702 of the FISA Amendments Act.

[3] Alan Greenblatt article, Our Surveillance Society – What Orwell and Kafka might say –  June 2013 http://www.npr.org/2013/06/08/189792140/our-surveillance-society-what-orwell-and-kafka-might-say

[4] Forced migrations of ethnic Germans in post WWII http://en.wikipedia.org/wiki/Flight_and_expulsion_of_Germans_%281944%E2%80%9350%29