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Non-human authors wanted. Drones, robots, and our relationship with technology.

“My relationship with the drone is like playing a video game: I feel out a composition and the drone will agree or challenge me. Eventually, though, the drone will develop a creative mind of its own.”  [KATSU, in interview with Mandi Keighran and N magazine, summer 2014].

KATSU, the New York City based artist/vandal/hacker depending on your point of view, raises the question in that interview for Norwegian Airlines’ magazine, of the relationship of “technology to graffiti,” or more broadly, of technology to art as a whole.

This, combined with another seemingly unrelated recent story, the David Salter macaque photo, made me wonder about drones, robots, and the role of the (non-)human author – our relationship with technology in art and beyond.

Ownership and Responsibility – Human or non-Human?

I wondered in both stories, how it may affect ownership and copyright. Rights, which led me to consider the boundaries of responsibility. In the first, if drones are used for creating something, is it as simple as ‘he who owns the drone owns or is responsible for the art it creates’? I wonder, because I don’t know, and while it may be clear today, I wonder if it is changing?

As regards, the second story, when the monkey-selfie went around the world focus was sharper on copyright law, than it was in the majority of the photos the macaque had taken.  “Can a monkey own a picture?” asked many, including Metro at the time.

”Wikimedia, the non-profit organisation behind Wikipedia, has refused a photographer’s repeated requests to stop distributing his most famous shot for free – because a monkey pressed the shutter button and should own the copyright,” said the Telegraph.

But whilst most on social media and the press I read, focused on the outcome for this individual photographer, I wondered, what is the impact for the future of photography?

I’ve come to the conclusion, in this particular case I think it is more important we consider it less about the monkey having taken the photo, and more important that it was decided that a human, did not.

This decision was not (yet) decided by a UK court,  but was reached in Wikimedia’s own report.

Since then, the LA Times reported on August 21st, that:

“the public draft of the Compendium of U.S. Copyright Office Practices, Third Edition —was released this week[1], and, after final review, is to take effect in mid-December [2] — says the office will register only works that were created by human beings.”

This is the first major revision in over twenty years and is an internal manual, so it does not have the force of law.  But it’s still significant. Copyright suitability is dependent on that the work “was created by a human being,” and only protects “…the fruits of intellectual labor” which are “founded in the creative powers of the mind.” Animal ownership is expressly excluded. (Section 306 – The Human Authorship Requirement). Pantomimes performed by a machine or robot are similarly, expressly non-copyrightable. (p.527) and continues:

“Similarly the Office will not register works produced by a machine or mere mechanical process that operates randomly, or automatically without any creative input or intervention from a human author.” (p 55)

The Telegraph article {August 6th} by Matthew Sparkes, said:

‘In its report Wikimedia said that it “does not agree” that the photographer owns the copyright, but also that US law means that “non-human authors” do not have the right to automatic copyright of any photographs that they take.

“To claim copyright, the photographer would have had to make substantial contributions to the final image, and even then, they’d only have copyright for those alterations, not the underlying image. This means that there was no one on whom to bestow copyright, so the image falls into the public domain,” it said.’

One would think common sense would mean that without the work by British photographer David Slater, there would have been no photograph. That his travel, equipment preparations and interaction with the animals was ‘substantial contribution’.

I wonder, could this become a significant argument in copyright and access to material in the public domain?  Because the argument came down NOT to whether a monkey can own copyright, but whether there was any human in which copyright was vested.

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If photographic copyright starts to depend on human ownership, I wonder if the way is opened for claims to creative images produced by drone or other forms of AI? I don’t know, and copyright law, is best left to experts. I’ve read UK and US legislation, around ownership, and around use of computers, but it could appear to an ordinary lay eye, that technology is evolving faster than the laws to govern it. Users and uses growing in hobby and commercial markets perhaps even more so.

In UK legislation:

“In this Part “author”, in relation to a work, means the person who creates it.”

“In the case of a literary, dramatic, musical or artistic work which is computer-generated, the author shall be taken to be the person by whom the arrangements necessary for the creation of the work are undertaken.” [Copyright, Designs and Patents Act 1988, Section 9]

It is easy to see how the macaque can slip through in UK law here, as it is not computer generated. And in the US non-human is clearly defined. But my question is to wonder at what point does copyright depend on autonomy? How do you define computer?

“Katsu pilots the drone remotely, but every movement is translated through the machine’s need to keep itself aloft and it adapts his directions.”

Where do you draw the line?

Why does it matter today at all?

It matters because copyright law is a gatekeeper and gateway. It makes it commercially viable for creators to produce and make work available to others. It defines responsibilities. One question I ask, is that if it’s no longer worth it, will we be worse off for not having the work they may have otherwise produced?

The market for work produced by or via drone,  is just becoming to hint at becoming mainstream.

The use of drones in photography, for example in hard to reach situations in useful functions like flood mapping will be of great service. Other uses in sports like alpine skiing, canoeing, is likely to increase.

What questions might it raise for artists & creators today?

Specifically on art and copyright: How will this ruling affect what types of images are worth taking? Will it make some work non-commercially viable, or their value determined by the channels of distribution rather than creator? Will this Wikimedia ruling affect the balance of power between creator and  commercial channel providers, in terms of ownership and distribution? I believe it rather serves to highlight where the balance is already.

Have we lessons learned from the music and book industry that apply here? (Clue: they both start with vowels and control distribution.)

Will the decision now go to a UK court and become a clarified legal position?

David Slater reportedly faces an estimated £10,000 legal bill to take the matter to court, said the Telegraph. At very best, this situation  is disrespectful to him and leaves a bitter aftermath, in the question of the power between artist and distributor. At worst, we could be on the cusp of being left behind in a brave new world of ownership and control of art and knowledge. A world in which actions may be taken through our technology, the product of which no human is deemed to have ownership. So how does that affect responsibility?

Will we leave it at that and learn no more from this man vs macaque non-human author debate? If so, then the real monkey is definitely not the one in the picture, and someone else is having the last laugh.

What about considering wider impacts?

In broader context, I believe the public should be asking questions to stay ahead of the game in terms of all legal rulings, and consider carefully the idea of non-human creation and ownership. We should  ensure that both State and commercial uses of drone are not set in place, from which we need to play catch up later. We should be driving the thinking to help shape the society we want to see, and shape the expectations of commercial and State use of drone technology.

What of the drones we cannot see, never hear and yet seem to be supported by our Governments? State surveillance piggybacks commercial infrastructures and tools in other fields, such as communications and social media. We should stay ahead of how drones are increasingly used commercially (as in Amazon pilot news) and we should demand much greater transparency of the existing drone use in our name, in security, surveillance and weaponry.

Who controls government decisions and the ethics of drone or robot use? In all of these questions, it comes down to – who’s in a position of power – or perhaps, if you think of the macaque selfie – who grinds the organ? With power, comes responsibility.

The ethics in use in war zones and in other military action, seen and unseen, is also something we should be asking to understand. To date, much of the public dismisses drone use as something which happens somewhere else and nothing to do with us.

These decisions affect what is done in the name of our country and indirectly reflect on us, as its citizens.  These decisions will shape the future commercial uses which will affect us as direct consumers, or as indirect recipients of their impacts on wider society.

There’s lots to think about, as drones develop into tools of art and applications in daily life. I know little of the legal aspects, what has been done already or is being considered today, or what will be in future. I just know, I have lots of questions as an everyday parent, considering what kind of society I hope my children, our future adult citizens, will inherit.  Where do I ask to find out?  My questions are not so much about the technology or law of it, at all. But they come down to the ethics, fairness & how this will shape the future.

Will we see drones soon in ordinary life or in an everyday future?

In this Wired article, Karl VanHemert states part of Katsu’s aim with the drone is simply to raise questions about the transformative effect the machines might have on art. He plans for it to be Open Source soon. Some argue that tagging is not art, but vandalism. You can see it in action via Motherboard’s video on YouTube here. Suggesting property marking will become a blight on society, you can ask what purpose does it serve? Others suggest drones could be used precisely to paint over graffiti and be of practical uses.

In Scotland it is a well known joke,  that once the painters have finished repainting from one side of the Forth Road Bridge to the other, it’s time for them to start again. Perhaps, those days are over?

Will we see them soon in everyday jobs, and will it make a difference to me? In commercial service, the mundane estate agent [no offence to those who are, you may be 007 or M in your spare time I know] is reported to be one of the commercial market sectors looking at applications of the photographic potential. It could replace cameras on long poles.

“Unmanned drones can be used for a range of tasks including surveying repairs and capturing particularly good views from unusual angles. ” [Skip Walker, stroudnewsandjournal.co.uk]

These uses are regulated in the UK and must have permission from the CAA.

So far though, I wonder if anyone I’ve met flying a hobby drone with camera over our heads (veering wildly between tent pitches, and enthralling us all, watching it watching us) has requested permission as in point 2?

Regulation will no doubt become widely argued for and against in the public security debate, rightly or wrongly. With associated risks and benefits, they have the potential to be of public service, entertainment and uses of which we have not yet thought.

But I have a niggling feeling that as long as State use of drones is less than fully transparent, the Government will not be in a rush to open the debate on their private and commercial uses.

Where does that leave my questions for my kids’ future?

Where is the future boundary in their use and who will set it?

The ethics in these everyday places must soon be considered because you may soon walk into a retirement home and find a robot playing chess with your relative. How would you feel about the same robot, running their bath?

Have you met Bob – the G4S robot in Birmingham – yet?

“While ‘Bob’ carries out his duties, he will also be gathering information about his surroundings and learning about how the environment changes over time”

“A similar robot, called ‘Werner’, will be deployed in a care home environment in Austria.”

How about robots in the home, which can read and ‘learn’ from your emotions?

Where are the boundaries of responsibility if we start to distinguish in law between ownership of the result of a task a human set up, but did not carry out? David Slater enabled everything for the photograph to be taken, but did not press the shutter.

I ask: “is the boundary of responsibility undermined by weakening the boundaries of ownership and autonomy of action?”

I think this seemingly silly monkey-selfie case, though clearly anything but for the livelihood of David Slater, should raise a whole raft of questions, that ordinary folk like me should be asking of our experts and politicians.  Perhaps I am wrong, and the non-human author as animal and non-human author as machine are clearly distinct and directed already in legislation. But as the Compendium of U.S. Copyright Office Practices [open for comment see footnote 2] decision shows, at minimum the macaque-selfie shoot, is not yet done in its repercussions.

Who decides what is creative input, intervention vs automatic or autonomous? Where do you draw the line at non-human? Does Bob – the G4S robot in Birmingham – count?

We may be far off yet, from AI what is legally considered ‘making its own decisions’, but when we get to the point where the owner of the equipment used has no influence, no intervention, of what, when or where an image is shot, will we be at the point where there is, no human author? Will we be at the point where there is no owner responsible for the action?

Especially, if in the words of Katsu,

“Eventually…the drone will develop a creative mind of its own.”

What does that mean for the responsibilities of drones & robots as security patrols, or as care workers? Is the boundary of responsibility undermined by weakening the boundaries of ownership and autonomy of action? If so, photographs being shot without a legally responsible owner, is the least of my worries.

 

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[1] Significant files ref: http://infojustice.org/archives/33164  Compendium of US Copyright Office practices – 3rd edition > full version: http://copyright.gov/comp3/docs/compendium-full.pdf

[2] Members of the public may provide feedback on the Compendium at any time before or after the Third Edition goes into effect. See www.copyright.gov/comp3/ for more information.

 

 

The big sleep

“You just put your lips together and blow.” RIP Lauren Bacall

Film fans around the world will feel another loss today, as the death of Lauren Bacall was announced.

The Huffington Post:

“Lauren Bacall, one of the last stars of Hollywood’s Golden Age, has died. [..}

... it was for her four films alongside Humphrey Bogart for which she will be best remembered.

Bacall married Bogart in 1945, the couple going on to have two children, a son and a daughter. The pair remained together until his death in 1957. After Bogart's death, Bacall married actor Jason Robards Jr, to whom she had a further son."

Anyone who knows me, knows how much I love classic films. I enjoy their pace, artistry and use of language which is often so different in contemporary film making. I am a fan of the forties style. I also love the audacity and spirit of fun which is portrayed in that era of Hollywood leading ladies.

Lauren Bacall's screen glamour and quintessential attitude will forever be immortalised in lines from To Have and Have Not, the film in which she met Bogart.

"You know how to whistle, don't you, Steve? You just put your lips together and blow.”

The idea of a woman capable of something a man was not or that she could be his equal, was slightly tongue in cheek, but in fact a critical component of the development in society at the time. In the Second World War, notions of what women could and could not do were tossed aside, as women whether in the workplace in manufacturing or agriculture, replaced their men at war. Clothes and looks, and attitudes to sexuality and marriage, were changing. Post-war there was turmoil as roles were realigned. Some of this was reflected in film of the era, women were often dutiful housewives or dangerous femmes fatales. Bacall straddled both in real life and on screen.

Attitudes to women's role in society and post-suffragism politics were changing. Bacall played an active role here. During the late 1940s, together with Bogart and others, she set up the Committee for the First Amendment. It was, widely noted as naive, an attempt to stand up to the attacks on Hollywood by the House of Un-American Activities Committee (HUAC), to defend free speech and political rights.  Much as one would see the Blacklist thirty years later portrayed in The Way We Were [1973] by Barbra Streisand.

Lauren Bacall saw much change in views towards women in society in her lifetime. But that passing line, in her breakthrough film points to one small, insignificant thing which does not seem that much changed, then or now. I find it can still be seen as mildly inappropriate or surprising by some today. A woman whistling in public. Not a wolf whistle, diet-soda-would-be-proud-at-that-misfired-act-of-equality style whistle. But a tune. A rip roaring rousing melody.

Some of the most simple things in life, bring the most pleasure.

Today it is rare that I meet another women who likes to whistle, at all, never mind as much as I do. When in towns in pedestrian underpasses, in deserted London Underground tunnels or in the car. Wherever I can get a good acoustic. But occasionally I’ll forget to stop if someone should unexpectedly stumble into the soundwaves. And quizzical glances, little smiles, half comments reveal, it’s maybe a little less usual. But perhaps we should celebrate simplicity more often. It’s fun to whistle, as it is to sing. And perhaps it’s OK to be a little different, a characteristic Director Howard Hawkes who discovered Bacall, sought out. And strove to preserve.

It was her film acting which made her name and found her leading man in all senses. For Lauren Bacall, Bogart was the love of her life. My favourite of their films, The Big Sleep, will no doubt be the source of headlines today.

Whist she also worked on Broadway in musicals, gaining Tony Awards for Applause in 1970 and Woman of the Year in 1981 it was her performance in the film, the The Mirror Has Two Faces which earned her a Golden Globe Award and an Academy Award nomination. In 2009 she received an Honorary Oscar “in recognition of her central place in the Golden Age of motion pictures.”

Amongst her own achievements, it may be she will be best remembered for what she shared together in the classic black and white era with Bogart, part of the glamorous couple. She hoped that she would be remembered more for herself.  For me,  she was unique, distinct and different in film noir. It’s her independent, grown up sassiness for which I’ll remember her on screen, and the glimpses into her strength of character I admired in real life.


“You know how to whistle, don’t you, Steve? You just put your lips together and blow.”

I won’t be unoriginal – RIP Robin Williams

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The boat painting in the film Good Will Hunting, by the Director, Gus Van Sant

 

 

 

 

 

 

 

From The Huffington Post:

“Beloved actor Robin Williams was found dead on Monday, police reported. He was 63.

According to his publicist, Williams had been battling severe depression.” (Huffington Post, August 11th)

As a teen, we’d all seen Dead Poet’s Society in which he played inspirational teacher, John Keating. We didn’t just watch it. We felt it. “Oh Captain, my Captain.” It was a film which allowed us as teens to discuss suicide. He taught us something of self expression, through fiction. He inspired us to indeed, seize the day. Carpe Diem. We felt his awkward authenticity. Or perhaps, his real-life authentic awkwardness. He had to manage his mental health publicly. There were occasions when you could see through the exterior, and see how hard that was.

One of my favourite of his films, is Good Will Hunting. Whilst cliched fiction, I have always enjoyed the park scene, in response to the boat painting discussion in which Will (Matt Damon) disrespectfully hits raw notes in Sean’s (the role played by Williams ) life. Matt Damon’s character hits out at criticism of his chosen path in life and avoiding the expectations of others. He counters, “At least I won’t be unoriginal.”  That is perhaps a comic’s greatest fear.

Whilst playing a psychologist, and asking his client to open up, Williams manages to do the same for himself on the screen. He somehow touches a genuineness in that role, perhaps revealing an ability for self-examination which not all of us possess. Whilst playing a character, I believe in that role we see much of what it meant to him being authentic as an actor and as a human being. He discusses the value and need we have of revealing who we really are. The importance of being oneself. And the grit of authentic experience. Comics are famous for being less than happy on the inside. Extrovert exteriors can be used to mask the inner storms and insecure introvert. We, Joe Public outsiders, will never know the real Robin Williams, but I believe this WTF radio interview with Marc Maron captured some of the authentic him, from 2010.

It comes with a ‘bad language’ warning if the title doesn’t give it away (mainly at the start): WTF interview April 26, 2010.

Mark gets Robin talking about playing the early days Mork, stand up clubs in the seventies and fellow comedians and experiences, learning his art. He talks about fears and authenticity, plagiarism and ‘the celebrity’.

The art of being a comic seems to have been fraught with fear of failure and fear of feelings, but a need to use them to engage with an audience. “What do you do with the anger? What do you do with the fear? ” He openly agrees with the interviewer, ”Big Time”. But he also shares how he deals with them. He shares his optimism on second chances, on alcoholism and heart surgery. He talks about divorce and living ‘in a different game as two units’, and how well his family manages it. They talk about sharing insecurities with the audience, and where they draw the line between sentiment and overstepping the mark, looking for approval from the audience. Effectively wanting to know from them, the universal question which makes the world go round, “do you love me?”

Talking about therapy they close by talking with humour, he puts the whole subject of dying over in the WTF category. He reveals through comic interpretation, discussion with his conscience. There is a fine boundary between his comedy humour and revealing his innermost thoughts. There may be many wondering about that interview today.

He was loved, popular with close colleagues and the wider worldwide audience. He will be missed. Most of all by his family, friends and those he knew, who should grieve in privacy. Let’s hope curiosity in the celebrity will permit them that.

His acting has been part of my life since I can remember watching films, and he touched the lives of many he will never know. My kids have laughed raucously watching him as Professor Brainard in Flubber only this week, in the summer holidays.

He was the deep Sean McGuire. He was the humorous DJ, Adrian Cronauer. He was the desperate & committed parent in Mrs. Doubtfire. He was engaged John Keating. He was the Fisher King. He enjoyed exploring dark traits in characters such as in the role of photo shop technician-turned-stalker in One Hour Photo. At the heart of each one was a glimpse into a conflicted character.

He was so much more. He was original. He was it seems, the very complex, Robin Williams.

Thank you, and Good Night.

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Added Aug 13th: I believe there is a need for society to be able to talk about suicide, as there was when it was raised through Dead Poet’s Society. But how we do it, still needs sensitivity and adjustment.  

The Samaritans called for extra care of reporting after news stories on August 13th breached guidelines. Their number: 08457 90 90 90

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Launching genomics, lifeboats, & care.data [part 2]

“On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].”

[Part one of this post is in this link, and includes thinking about care.data & genomics interaction].

Part two:

What is the expectation beyond 2017?

The investment to date may seem vast if, like me, you are unfamiliar with the amounts of money that are spent in research [in 2011 an £800M announcement, last summer £90M in Oxford as just two examples], and Friday revealed yet more money, a new £300M research package.  It is complex how it all adds up, and from mixed sourcing. But the stated aim of the investment is relatively simple: the whole genomes of 75,000 people [40K patients and 35K healthy relatives] are to be mapped by 2017.

The infrastructure of equipment is enormous to have these sequences running 24/7 as was indicated in media TV coverage. I’m no maths whizz, but it appears to me they’re building Titantic and the numbers of actual people planned to take part (75K) would fit on the lifeboats. So with what, from whom, are they expecting to fill the sequencing labs after 2017? There will be  no point building the infrastructure and finding no volunteers want to take part. You don’t build the ship and sail without passengers. What happens, if the English don’t volunteer?

I cannot help but think of the line in the film, Field of Dreams. If you build it they will come. So who will come to be tested? Who will come to exploit the research uses for public good? Who will come to exploit the resulting knowledge for their own commercial gain? How will the commercial and charity investors, make it worth their while? And are we worth it?

All the various investors in addition to the taxpayer; Wellcome Trust, the MRC, Illumina, and others, will want to guarantee they are not left with an empty shell. There is huge existing and promised investment. Wellcome for example, has already “invested more than £1 billion in genomic research and has agreed to spend £27 million on a world class sequencing hub at its Genome Campus near Cambridge. This will house Genomics England’s operations alongside those of the internationally respected Sanger Institute.”

Whilst the commercial exploitation by third parties is explicit, there may also be the possibility to consider, that the Government would want:

a) some cost participation by the participants and

b) will want to sell the incidental findings’ results to the participants.

[ref: http://www.phgfoundation.org/file/10363 ref. #13]

“Regier et al. 345 have estimated the willingness-to-pay (WTP) for a diagnostic test to find the genetic cause of idiopathic developmental disability from families with an affected child. They used a discrete choice experiment to obtain WTP values and found that these families were willing to pay CDN$1118 (95% CI CDN$498-1788) for the expected benefit of twice as many diagnoses using aCGH and a reduction in waiting time of 1 week when compared to conventional cytogenetic analysis.”

“Moreover, it is advisable to minimise incidental findings where possible; health care professionals should not have an obligation to feedback findings that do not relate to the clinical question, except in cases where they are unavoidably discovered and have high predictive value. It follows that the NHS does not have an obligation to provide patients with their raw genome sequence data for further analysis outside of the NHS. We make no judgement here about whether the individual should be able to purchase and analyse their genome sequence independently; however, if this course of action is pursued, the NHS should provide follow-up advice and care only when additional findings are considered to be of significant clinical relevance in that individual…” [13]

How much is that cost, per person to be mapped? What is the expected return on the investment?

Are we measuring the costs and benefits?

Patient and medical staff support is fundamental to the programme, not an optional extra. It should not be forgotten that the NHS is a National Service owned by all of us. We should know how it runs.

So let’s see on paper, what are the actual costs vs benefits? Where is the overall and long term cost benefit business case covering the multi-year investment, both of tangible and intangible benefits? In my personal research, I’m yet to find one. There is however, some discussion in this document:

“The problem for NGS is that very little ‘real’ information is available on the actual costs for NGS from the NHS perspective and the NHS Department of Health Reference Costs Database and PSSRU, where standard NHS costings are listed, are generally not helpful.” [13 - PHG, 2011]

Where are the questions being asked if this is really what we should be doing for the public good and for the future of the NHS?

Research under good ethics and bona fide transparent purposes is a public asset. This rollout, has potential to become a liability.

To me, yet again it seems, politics has the potential to wreck serious research aims and the public good. Politicians and civil servants in NHS England appear to use both research and the notion of the broad ‘public good’, broadly in speeches to appear to be doing ‘the right thing to do’, but without substance. Without a solid cost-benefit analysis, I admit, I am skeptical.

Is society prepared for this?

I question whether the propositions of the initiative have been grasped by Parliament and society as a whole. This is massive in its practical implications. It raises a huge number of ethical questions. Not least of which will be around incidental findings, as the Radio 4 interview raised.

The first I have is consideration of pre-natal testing plans:

“Aside from WGS of individuals, other applications using NGS could potentially be more successful in the DTC market. For example, the use of NGS for non-invasive prenatal testing would doubtless be very popular if it became available DTC prior to being offered by the NHS, particularly for relatively common conditions such as Down syndrome…” [

and then the whole question of consent, particularly from children:

"...it may be almost impossible to mitigate the risk that individuals may have their genome sequenced without their consent. Some genome scan companies (e.g. 23andMe) have argued that the risks of covert testing are reduced by their sample collection method, which requires 2ml of saliva; in addition, individuals are asked to sign to confirm that the sample belongs to them (or that they have gained consent from the individual to whom it belongs). However, neither of these methods will have any effect on the possibility of sequencing DNA from children, which is a particularly contentious issue within DTC genomics." [13]

“two issues have emerged as being particularly pressing: first is the paradox that individuals cannot be asked to consent to the discovery of risks the importance of which is impossible to assess. Thus from a legal perspective, there is no ‘meeting of minds’ and contractually the contract between researcher and participant might be void. It is also unclear whether informed consent is sufficient to deal with the feedback of incidental findings which are not pertinent to the initial research or clinical question but that may have either clinical or personal significance…” [PHG page 94]

And thirdly, we should not forget the elderly. In February 2014 the Department of Health proposed that a patient’s economic value should be taken into account when deciding on healthcare. Sir Andrew Dillon, head of the National Institute for Healthcare and Excellence (NICE, who set national healthcare budgets and priorities), disagreed saying:
“What we don’t want to say is those 10 years you have between 70 and 80, although clearly you are not going to be working, are not going to be valuable to somebody.

Clearly they are. You might be doing all sorts of very useful things for your family or local society. That’s what we are worried about and that’s the problem with the Department of Health’s calculation.

There are lots of people who adopt the fair-innings approach; ‘you’ve had 70 years of life you’ve got to accept that society is going to bias its investments in younger people.”

[14 - see Channel 4] Yet our population is ageing and we need to find a balance of where roles, rules and expectations meet. And question, how do we measure human value, should we, and on what basis are we making cost-based care decisions?

The Department of Health proposed that a patient’s economic value should be taken into account when deciding on healthcare. What is their thinking on genomics for the care of the elderly?

Clinical environment changes make engagement and understanding harder to achieve

All this, is sitting on shifting, fundamental questions on how decision making and accountability will be set, in a world of ever fragmenting NHS structure:

“More problematic will be the use of specific genomic technologies such as NGS in patient pathways for inherited disorders that are delivered outside the clinical genetics services (such as services for FH, haemophilia and sickle cell disease) and NGS that is used for non-inherited disease conditions. These will be commissioned by GP consortia within established care pathways. Such commissioning of companion diagnostics would, in theory be evaluated first by NICE. However, it is not clear what capacity NICE will have across a broad range of uses. In practice it seems likely that GP consortia may make a variety of different decisions influenced by local experts and pressure, funding and different priorities. Particular questions for NGS will include: How will commissioners be provided with the necessary evidence for decision-making and can this be developed and coordinated at a national level? How will commissioners prioritise particularly when it may be necessary to invest early in order to achieve savings later? What (if any) influence may commissioners be able to exert over the configuration of test providers (for example the rationalisation of laboratories or the use of private testing companies)? [13]
Today (August 8th) the public row between Roche and the Government through NICE became apparant on cancer treatment. And again I found myself asking, what are we not funding, whilst we spend on genomics?  If you did not you hear Sir Andrew Dillon & the discussion, you can listen again on BBC Radio 2 iPlayer here. [It's in the middle of the programme, and begins at 01:09.06.]

So I am full of questions, for which there is no one to answer

Where has the population indicated that this is the direction of travel we wish our National Health Service to take? What preparation has been made for the significant changes in society it will bring? When was Parliament asked before this policy and huge public spend were signed off? Who is preparing the people and processes for this explosive change, announced with sparklers, at arms length and a long taper? Are the challenges being shared honestly between policy, politicians and scientists, as discussed at the stakeholder meeting at St.Barts London, 3rd October 2013 (a key panel presentation: 45 minute video with slides)? And when will that be shared with the public and NHS staff in full? Why does NHS England feel this is so fundamental to the future of the NHS? Must we abandon a scuppered and sinking NHS for personalised medicine on personal budgets and private health insurance?

Is genomics really the lifeboat to which the NHS is inextricably bound?

The Patients and Information Directorate nor wider NHS England Board does not discuss these questions in public nor seek alternative solutions to as they saw it at the July 3rd 2014 Board Meeting, the inevitable future loss of equity of access because of genomic stratification, dividing the population into risk pool classifications [10.42] . To my mind, that is the end of the NHS as we know it. And it is so, through planned policy.

When will we get answers to these questions, and more?

Because even the most esteemed in our land can get things wrong. One of them at the St.Bart’s events quotes on of my favourite myths attributed wrongly to Goethe. It cannot be attributed to him, that he said, ” “Whatever you can do or dream you can, begin it. Boldness has genius, power and magic in it.” You see, we just hear something which sounds plausible, from someone who seems to know what they are talking about. It isn’t always right.

Since the NHS belongs to all of us, we should be able to ask questions and expect answers about its planning,  how we choose to spend its budget and how it will look in future.

These are all questions we should be asking as society

Fundamentally, in what kind of society will my children grow up?  With the questions of pre-natal intervention, how will we treat our disabled and those who are sick, or vulnerable? Are we moving towards the research vision Mr.Hunt, Cameron and Freeman appear to share, only for good, or are we indeed to look further head to a Gattacan vision of perfection? How may this look in a society where ‘some cornflakes get to the top‘ and genetic advantage seen as a natural right over those without that ability?

For those with lifelong conditions, how may genetic screening affect their life insurance when the Moratorium expires in 2017? How will it affect their health care, if the NHS England Board already sees that it will affect equity of access? How will it affect those who choose not to have screening – will we be penalised for that?

After the August 1st announcement, [11] The Wellcome Trust‘s reporting was much more balanced and sensible than the political championing had been. It grasps the challenges ahead:

“Genomics England has ambitious plans to sequence 100,000 genomes from 75,000 people, some of whom will also have cancer cells sequenced. The sheer scale of the plans is pretty daunting. The genetic information arising from this project will be immense and a huge challenge for computational analysis as well as clinical interpretation. It will also raise a number of issues regarding privacy of patient data. Ensuring that these genetic data can be used maximally for patient benefit whilst protecting the rights of the individual participant must be at the heart of this project.

At the beginning of the Human Genome Project, scientists and funders like the Wellcome Trust knew they were on a journey that would be fraught with difficulties and challenges, but the long-term vision was clear. And so it is with the plans for Genomics England, it will most certainly not be easy…”

Reality is that yet again, Change Management and Communications have been relegated to the bottom of the boarding priorities list.

This is not only a research technology or health programme. Bigger than all of that is the change it will bring, not only in NHS practice, should the everyday vision of black boxes in GP surgeries become reality, but for the whole of society. For the shape of society, in age and diversity. Indeed if we are to be world leaders, we have potential to start to sling the world on a dangerous orbit if the edges of scope are ill defined. Discussing only with interested parties, those who have specific personal or business interests in genomic research and data sharing, whilst at Board meetings stating quietly how this may signal the end of equity of access to all for a free at the point of delivery health service, is in my opinion, tantamount to deliberate secrecy, and Board individual and collective endorsement of policy.

Less than a month ago, at the NHS England Board Meeting on July 3rd,  one very sensibly asked, “how do we lead people from where we are, and how we take the public with us? We need to be a world leader in engaging all the public”

Engagement is not rocket science. But don’t forget the ethics.

If this project is meant to be, according to MP George Freeman [George 2], akin to Kennedy launching the Space Race, then, by Fenyman [12], why can they not get their public involvement at big launches sorted out?

Is it because there are such large gaps and unknowns that questioning will not stand up to scrutiny? Is it because suggesting a programme will end the NHS as we know it, would be fatal for any politician or party who supports that programme in the coming year? But why bother will the big press splash, if it should not make waves?

In the words of Richard Feynman after the Challenger launch disaster in 1986:

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

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

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations… [June 6th 1986. Six months after the disaster, the Report to the Presidential Commission (Appendix F)]

Just like the Rosetta spacecraft is getting ever closer to actually landing on the comet, its goal, [15 - BBC Newsround has an excellent little summary] after over ten years, so too is genomics close to the goal of many. It is within grasp that the long-planned mainstreaming of genomic intervention, will touch down in the NHS. My hope is that in its ever closer passes, we get hard factual evidence and understand exactly where we have come from, and where we intend going. What will who do with the information once collected?

The key is not the landing, it’s understanding why we launched in the first place.

Space may not be the most significant final frontier out there in the coming months that we should be looking at with a telescope. Both in health and science.  Our focus in England must surely be to examine these plans with a microscope, and ask what frontiers have we reached in genomics, health data sharing and ethics in the NHS?

******  image source: ESA via Nature

[1] “It’s a hugely ambitious project, it’s on a par with the space race how Kennedy launched 40 years ago.” [from 2:46.30 BBC Radio 4 Int. Sarah Montague w/ George Freeman]

[2] Downing Street Press Release 1st August – genomics https://www.gov.uk/government/news/human-genome-uk-to-become-world-numb

[3] 6th December “Transcript of a speech given by Prime Minister at the FT Global Pharmaceutical and Biotechnology Conference” [https://www.gov.uk/government/speeches/pm-speech-on-life-sciences-and-opening-up-the-nhs]

[4] 10th December 2012 DNA Database concerns Channel 4 http://www.channel4.com/news/dna-cancer-database-plan-prompts-major-concerns

[5] Wellcome Trust- comment by Jeremy Farrar http://news.sky.com/story/1311189/pm-hails-300m-project-to-unlock-power-of-dna

[6] Strategic Priorities in Rare Diseases June 2013 http://www.genomicsengland.co.uk/wp-content/uploads/2013/06/GenomicsEngland_ScienceWorkingGroup_App2rarediseases.pdf

[7] NHS England Board paper presentation July 2013 http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item16.pdf

[8] ICO and HSCIC on anonymous and pseudonymous data in Computing Magazine http://www.computing.co.uk/ctg/news/2337679/ico-says-anonymous-data-not-covered-by-data-protection-act-until-its-de-anonymised

[9] HSCIC Pseudonymisation Review August 2014 http://www.hscic.gov.uk/article/4896/Data-pseudonymisation-review

[10] November 2013 ISCG – political pressure on genomics schedule http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-001-ISCG-Meeting-Minutes-and-Actions-26-November-2013-v1.1.pdf

[11] Wellcome Trust August 1st 2014 The Genetic Building Blocks of Future Healthcare

[12] Fenyan – For successful technology reality must take precedence over PR http://jenpersson.com/successful-technology-reality-precedence-public-relations/

[13] Next Steps in the Sequence – the implications for whole genome sequencing in the UK – PHG Foundation, funded by the PHG Foundation, with additional financial support from Illumina. The second expert workshop for the project was supported by the University of Cambridge Centre for Science and Policy (CSaP) and the Wellcome Trust http://www.phgfoundation.org/file/10363

[14] Anti-elderly drugs proposals rejected by NICE: Channel 4 http://www.channel4.com/news/nice-assessment-elderly-health-drugs-rejected-contribution

[15] BBC Newsround: Rosetta spacecraft and the comet chasing

*****

For avoidance of confusion [especially for foreign readership and considering one position is so new], there are two different Ministers mentioned here, both called George:

One. George Osborne [George 1] MP for Tatton, Cheshire and the Chancellor

Two. George Freeman [George 2] MP – The UK’s first-ever Minister for Life Sciences, appointed to this role July 15th 2014 [https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state--42]

*****

Genomics 100K signing

Launching genomics, lifeboats, & care.data

On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].

“The UK is set to become the world leader in ground-breaking genetic research into cancer and rare diseases, which will transform how diseases are diagnosed and treated, thanks to a package of investment worth more than £300 million.” [DH press release, August 1 2014. [2] ]

Whilst Mr. Cameron & George Osborne visited the arson-damaged Eastbourne Pier, the lifeboat staff and firemen who attended, back in Downing Street, representatives led by George Freeman MP signed the £300M investment package, the next step in the genomic investment plan, with American Jay Flatley, CEO of Illumina.

Mr. Cameron first announced this research drive shared with commercial pharmaceutical companies on 6th December 2011 and famously said ‘every willing patient should be a research patient’[3] (video) and they would consult to change the NHS Constitution to enable it:

“…with their medical details “opened up” to private healthcare firms, says David Cameron.”

George Freeman_ 100K

This was the next step in that programme, hailed as an historic moment, a giant leap forward for genomics.

The photo call for the symbolic signing included Jay Flatley President, Chief Executive Officer and a member of the Board of Directors of Illumina, Inc, Sir John Chisholm Executive Chair of Genomics England & Chair of Nesta, together with Dame Sally Davies Chief Medical Officer and Mr. George Freeman [George 2] MP for mid-Norfolk, and the newly appointed Life Sciences Minister.

Fewer than twelve months before an election the Government has decided to commit commercially to a US based company, in a programme which Mr.Cameron himself said,  has had controversy. That c-word is one the Conservatives will want to avoid in the coming election campaign.

This Channel 4 [4] film from 18 months ago, (December 2012) raises many questions as valid today as then. The inestimable Jon Snow asked then, why is the Business Department announcing this [the launch of the pilot programme, when focused then first in rare cancers]? We understand that commercial pharma, charities and the State work hand-in-glove (as Mr.Cameron’s 2011 vision stated). But how will this commercial venture benefit the NHS long term as well as individual patients and the public as a whole? Is it concrete on benefits to patients vs benefits to UK plc?

So what was the key press message which came over?

The coverage of the week since August 1st, expounded the belief that through Genomics England Ltd we will do away with  chemotherapy in the future. I believe this should be the source of a raging debate, but it passed by with little more than a few waves.

“We will look back in 20 years’ time and the blockbuster chemotherapy drugs that gave you all those nasty side effects will be a thing of the past,”said Jeremy Farrar Director of the Wellcome Trust, reported Sky. [5]

The original review given last summer to Genomics England including listing the rare diseases which may affect the 6% of the population, suggests one consideration, targeting those with very high likelihood of familial links and therefore success.[6] There are obviously great challenges in turnaround time for the genetic processing to be useful in clinical decision making. Considering whether or not it is timely or accurate enough to be of clinical benefit in acute cancer care clinical decision making will be vital. I’d like to get a reliable medical update on the status of this, to understand it better:

“Results are provided for patients in a timely fashion (e.g. within 8 weeks) and with sufficient clinical accuracy (not yet established for WGS) [whole genome sequencing].” [page 3 of 8]

And what was the press result and public reaction to the news?

As one example, look at lunchtime on Friday August 1st, Radio 2 callers to the Jeremy Vine show. They included two undergoing chemo who felt they had to call  in, to tell others, chemo is not always as bad as it sounds and make sure you don’t give up on it, refuse treatment or wait for this new genetic solution.

The impression was given, there is a new wonder solution within grasp on the horizon. This seemed to me rather reckless and unfairly manipulative on the ill and vulnerable to give them a blanket hope, that their cancer treatment may become so much better, soon. These are real people’s lives, not guinea pigs with which one can feel free to trial hypothesis and hype. If anyone now refuses chemo as a result of the Friday fantasy projections, their health may have been directly impacted. I would like to have heard a DH or Genomics England press manager speaking, not allowing such public free rein, to ensure it was factually accurate. But I’m guessing that Genomics England as an ALB is not really ready for press yet [their public engagement and education programme isn't ready yet they confirmed],  and the DH perhaps thinks at arms length, it’s not their responsibility and outside their remit. Stuck in the middle, we have the commissioning body, NHS England.

How may this involve all of us and our NHS and care.data?

In most recent memory, NHS England tried and so far failed in February, to engage the public and clinicians in the extraction of our GP stored health records, in the care.data initiative. Care.data languishes in some sort of unknown black hole at the moment, with little public engagement and pilots promised ‘for autumn’. Both programmes are run under the auspices of Mr. Kelsey at NHS England, and arms length from the Department of Health. Last summer, Tim Kelsey and Sir Bruce Keogh presented a paper to the Board on Genomics and its interaction with NHS patient records. [7]

Given that the Genomics paper indicated that care.data and NHS held patient records were of paramount importance to NHS England I would like to have seen more transparency over this, including informed public and parliamentary debate:

“Issues of data ownership and transparency are of paramount importance to NHS England as set out in the Mandate and given the hugely positive developments in Care.Data. Geraint  Lewis is leading this work, and has begun work to consider how the sequencing data might be held, connected to patient records and subsequently be exploited. It will also look at the connections between this work and the establishment of care data in the NHS. The NHS England data and informatics team will retain oversight of the informatics and data work and discussions continue on how it can best inform and support the implementation of business plan of Genomics England Limited.”

NHS England Board paper, July 2013 [7]

There has been almost no public statement from NHS England on genomics and our data management in the same discussion, until now. George Freeman MP [2] said on BBC Radio 4 (Starting from 2:46.30 in interview with Sarah Montague:

“It’s absolutely not the care.data initiative discussed earlier in the year. This is 100K patients, all volunteering and all providing their consent. It’s completely anonymised data in the data set, the only person who would be able to come back to the patient and make a link with the genomics and the diagnosis, is their doctor. We’re creating a database so that NHS researchers and industry researchers, can look at the broad patterns. 90% of patients with that variation, get that disease, this drug works in 50% of patients…It’s completely anonymised, there is no basis on which you could make the link. The only person who can make the link is the NHS clinician.”

Whilst this is not the same initiative, it plans to use some of the same data for those people who have consented to participate in the 100K Genome Project. The data will be extracted from care.data to include longitudinal, phenotype data across a person’s lifetime. I spoke to the Genomics England media team last autumn which confirmed the same thing. The trouble is Mr. Freeman [2], that ‘anonymous’ in care.data turned out to not be anonymous at all.  ICO and HSCIC [8] are still working this out. [HSCIC has just published its first review of pseudonymisation review 9] And we discovered that far from being released only to clinicians and researchers, our hospital data has been sold to all sort of unexpected third parties. [see the Partridge Review]

So how should we expect our care.data to be used now, and trust for what purposes it will be extracted and stored for the future?  What mechanisms will separate consent for care.data commissioning from this kind of research? How will we trust this data sharing now as Department for Patients and transformation care.data proposals seem still undefined and ever widening?

What happens next?

{Part two continues here}

******

[1] “It’s a hugely ambitious project, it’s on a par with the space race how Kennedy launched 40 years ago.” [from 2:46.30 BBC Radio 4 Int. Sarah Montague w/ George Freeman]

[2] Downing Street Press Release 1st August – genomics https://www.gov.uk/government/news/human-genome-uk-to-become-world-numb

[3] 6th December “Transcript of a speech given by Prime Minister at the FT Global Pharmaceutical and Biotechnology Conference” [https://www.gov.uk/government/speeches/pm-speech-on-life-sciences-and-opening-up-the-nhs]

[4] 10th December 2012 DNA Database concerns Channel 4 http://www.channel4.com/news/dna-cancer-database-plan-prompts-major-concerns

[5] Wellcome Trust- comment by Jeremy Farrar http://news.sky.com/story/1311189/pm-hails-300m-project-to-unlock-power-of-dna

[6] Strategic Priorities in Rare Diseases June 2013 http://www.genomicsengland.co.uk/wp-content/uploads/2013/06/GenomicsEngland_ScienceWorkingGroup_App2rarediseases.pdf

[7] NHS England Board paper presentation July 2013 http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item16.pdf

[8] ICO and HSCIC on anonymous and pseudonymous data in Computing Magazine http://www.computing.co.uk/ctg/news/2337679/ico-says-anonymous-data-not-covered-by-data-protection-act-until-its-de-anonymised

[9] HSCIC Pseudonymisation Review August 2014 http://www.hscic.gov.uk/article/4896/Data-pseudonymisation-review

[10] November 2013 ISCG – political pressure on genomics schedule http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-001-ISCG-Meeting-Minutes-and-Actions-26-November-2013-v1.1.pdf

[11] Wellcome Trust August 1st 2014 The Genetic Building Blocks of Future Healthcare

[12] Fenyan – For successful technology reality must take precedence over PR http://jenpersson.com/successful-technology-reality-precedence-public-relations/

[13] Next Steps in the Sequence – the implications for whole genome sequencing in the UK – PHG Foundation, funded by the PHG Foundation, with additional financial support from Illumina. The second expert workshop for the project was supported by the University of Cambridge Centre for Science and Policy (CSaP) and the Wellcome Trust http://www.phgfoundation.org/file/10363

[14] Anti-elderly drugs proposals rejected by NICE: Channel 4 http://www.channel4.com/news/nice-assessment-elderly-health-drugs-rejected-contribution

*****

For avoidance of confusion [especially for foreign readership and considering one position is so new], there are two different Ministers mentioned here, both called George:

One. George Osborne [George 1] MP for Tatton, Cheshire and the Chancellor

Two. George Freeman [George 2] MP – The UK’s first-ever Minister for Life Sciences, appointed to this role July 15th 2014 [https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state--42]

*****

(AFP Photo / Mohammed Abed)

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)

chopin

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

Five months after the most recent delay to the care.data launch, I’ve come to the conclusion that we must seek long-term excellence in its performance, not content ourselves with a second-rate dress rehearsal.

“Sharing our medical records, is like playing Chopin. Done well, it has the potential to demonstrate brilliance. It separates the good, the bad and the ugly, from the world-class players.  But will we get it right, or will we look back at repeat dire performances and can say, we knew all the right notes, but got them all in the wrong order?”

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

The vast majority were from organisations which are data users, some names familiar from the care.data press coverage in spring, [Beacon Consulting, Harvey Walsh] plus many university and charity driven researchers.

Sir Kingsley Manning, Sir Nick Partridge and Andy Williams [The  CEO since April 2014] all representing HSCIC, spoke about the outcomes of the PWC audit, which sampled 10% of the releases of identifiable or pseudonymous data sharing agreements for closer review, and what is termed ‘Back Office’ access (by the police, Home Office, court orders) in the eight years as the NHS IC prior to the HSCIC rebrand and changes on April 1st, 2013.

“The standard PwC methodology was adopted for sample testing data releases with the prevailing governance arrangements. Samples were selected for each of the functional areas under review. Of the total number of data releases identified (3,059); approximately a 10% sample was tested in total.” (Report, Data Release Review June 2014)

I believe it is of value to understand how we got here as well as the direction in which the HSCIC is moving. This is what the meeting sought to do, to first look back and then look forward. They are Data Controller and Processor of our health records and personal identifiable data. As care.data pathfinder pilots approach at a pace, set for ‘autumn’, the changes in the current processes and procedures for data handling will not only effect records which are already held, from our hospital care and other health settings‘, but they will have a direct effect on how our medical records extracted from GP practices will be treated, for care [dot] data in the future.

Data Management thus far has failed to meet the standards of world class delivery; in collection, governance and release

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

It made me think, that sharing our medical records, is like playing Chopin. Done well, it has potential for brilliance. It separates the good, the bad and the ugly, from the world-class players. Even more so, when played as part of suite, where standards are understood and interoperable . Data sharing demands technical precision, experience and discipline. Equally, gone wrong, we can look back at past performances and say, we had world class potential and knew all the right notes, but got them all in the wrong order. Where did we fail? Will we learn, or let it repeat?

The 2.5 hour event, focused more on the attendees’ main interest, how they will be affected by any changes in the release process. Some had last received data before the care.data debacle in February put a temporary halt on releases.

As a result of planned changes, will some current data customers find, that they have already received data for the last time, I wonder?

After the initial review of the critical findings in the Partridge report, the discussion centred on listening to suggestions what may be done in England to prevent future fails. But in fact, I think we should be going further. We should be looking at what we are doing in England to be the world-class player that the Prime Minister said he wants.[5]

We are focused on making the best of a bad job, when we could be looking at how to be brilliant.

To me, the meeting missed a fundamental point. Before they decide the finer points of release, they need to ensure there will be data to collect. There was not one mention of the public’s surprise that our data was collected and had been sold or shared with each of them until last spring. So now that the public in part knows about it, the recipients should also consider we are watching them closely.

Data users are being judged as one, by their group performance

What the data recipients may or may not be conscious of, is that they too each are helping to shape the orchestra and will determine the overall sound that is heard outside.

They may not realise that as data recipients, we citizens, the data providers, will see and hear their actions and respond to them all collectively, in terms of what impact it may have on our opt in/out decision.

I heard on Monday one or two shriller voices from global data intermediaries claiming that others had been receiving data whilst their own requests had been overlooked. As of last Friday, HSCIC said 627 requests were on standby, waiting for review and to know whether or not they would receive data. Currently HSCIC is getting 70 new requests a month. Bearing in mind the attendees were mostly data users, they can be forgiven that they were mostly concerned about data release and use, but they did in part also raise the importance of correct communication, governance and consent of extraction. They realise without future public trust, there is no future data store.

One consultancy however, seemed to want to blame all the other players for their own past mistakes, though there was no talk of any blame in any discussion otherwise. They asked, what about the approvals process for SUS (Secondary Uses Service data), how are those being audited and approved, is it like HES? How about HSCIC getting their act together on opt out, putting power back in the hands of patients, they asked. What about the National Cancer Registries, ONS (Office of National Statistics), all the data which is not HES, will there be one entrance point to access all these data stores for all requests? And as for insurance concerns by patients, the same said, people were foolish to be concerned. Why, “if they don’t get our health data then all the premiums will go up.”

My my, it did feel a little like a Diva having a tantrum at the rest of the performers for messing up her part. And she would darn well pull the rest of them into the pit with her if she was going to get cancelled. In true diva style, I’m sure that company didn’t even realise it.

But all those data recipients are in the same show now – if one of them screws up badly, the critics will slam them all. And with it, their providers of data, we patients, will not share our data. Consent and confidentiality are golden tickets and will not be given up lightly. If  all the data-using players perform well, abide by the expected standards, and treat both critics, audience and each other with proper etiquette, then they will get their pay, and get to stay in the show. But it won’t be a one time deal. They will need to learn continuously, do whatever the show conductor asks, and listen and learn from the critics as they perform in future, not slacking off or getting complacent.

Whilst the meeting discussed past failings in the NHS IC, I hope the organisations will consider what has truly shocked the public is some of the uses to which data has been put. How the recipients used it. They need to examine their own practices as much as HSCICs.

The majority of the attendees were playing from the same score, asking future questions which I will address in detail in part two.

The vast majority asked, how will the data lab work? And other Research users asked many similar and related questions. [This from medConfidential [6] whilst on the similar environment for accredited safe havens, goes some way to explaining the principle of a health research remote data lab (HRRDL).]

Governance questions were raised. Penalties were an oft recurring theme and local patient representative group and charity representatives, asked how the new DAAG lay person appointments process would work and be transparent.

Other questions on past data use, were concerned with the volume of Back Office data uses. The volume of police tracing for example. How person tracing by the border agency, particularly with reference to HIV and migrant health, which may reveal data to border agencies which would not normally be shared by the patients’ doctors. “If people are going to have confidence in HSCIC, this was a matter of policy which needed looking at in detail. ” The HSCIC panel noted that they also understood there were serious concerns on the quantity of intra-government departments sharing, the HMRC, Home and Cabinet Offices getting mentions.  “There was debate to be had”, he said.

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

They’re collectively recovering from unexpected and catastrophic criticism at the start of the year. It is still having a critical effect on many organisations because they don’t have access to the data exactly as they used to, with a backlog built up after a temporary stop on the flow which was restarted after a couple of months. HSCIC has reviewed themselves, in part, and any smart attendees on Monday will know how each of their organisations have fared. The audit has found some of their weaknesses and sought to address them. There is a huge number of changes, definitions and open considerations under discussion and not yet ready to introduce. They realise there is a great amount of work still to be done, to bring the theory into practice, test it out, edit and get to a point where they are truly ready for a new public performance.

But none of the truly dodgy sounding instruments have been kicked out yet. I would suggest there are simply organisations which are not themselves of the same standards of ethics and physical best practices which deserve to manage our data. They will bring down the whole, and need rejected – the commercial re-use licenses of commercial intermediaries. And the playing habits of the data intermediaries need some careful attention, drawing the line between their clinical support work and their purely commercial purposes. The pace may have slowed down, but data is still flowing out, and there was no recognition that this may be without data protection permission or best practice, if individuals aren’t aware of their data being used in this way. The panel conducted a well organised and orderly discussion, but there were by far more open questions, than answers ready to be given.

What we do now, sets the future stage of all data sharing, in the UK and beyond – to be brilliant, will take time to get right

How HSCIC puts into action and implements the safeguards, processes and their verbal plans to manage data in the short and medium term, will determine much for the future of data governance in England, and the wider world. Not only in terms of the storage and release of data – its technical capability and process governance, but in the approach to data extraction, fair processing, consent, communication and ongoing management.

This is all too important to rush, and I hope that the feedback and suggestions captured on the day will be incorporated into the production. To do so well, will need time and there is no point in some half-ready dress rehearsal when so much is yet to be done.

The next Big Thing – care.data

When it came to care.data, Andy Williams said it had been a serious failing to not recognise that patients view their GP records quite, totally differently, from the records held at a hospital. Sharing their HES data.

“And it is their data, at the end of the day,” he recognised.

So to conclude looking back, I believe where data sharing has reached, is leaps and bounds ahead of where it was six months ago. The Partridge Review and its recommendations recognises there are problems and makes 9 recommendations. There is lots more the workshop suggested for consideration. If HSCIC wants to achieve brilliance, it needs to practise before going out on a public stage again. The excellence of Chopin’s music does not happen by chance, or through passion alone. To achieve brilliance we cannot follow some romantic notion of ‘it will all be alright on the night’. Hard edged, technical experience knows world-class delivery demands more.

So rolling out care.data as a pathfinder model in autumn before so much good preparation can possibly be done, is in my opinion, utterly pointless. In fact, it would be damaging. It will be like pushing  a grade 5 school boy who’s not ready into the limelight, and just wishing him luck, while you wait whistling in the wings. But what will those in charge say?

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

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

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

*****

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

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

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

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

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

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

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

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

[9] Classic comedy Morecambe & Wise, with Andre Previn - all the right notes, but not necessarily in the right order https://www.youtube.com/watch?v=-zHBN45fbo8

[10] Blog post part two: care.data is like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two - future]

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

####

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

“That November farewell, given in aid of a Polish charity, came at the end of a difficult six-month British sojourn, which had included concerts in Manchester (one of the largest audiences he ever faced), Glasgow and Edinburgh, where the non-religious Chopin had unwillingly endured Bible readings by a pious patroness anxious to convert him to the Church of Scotland. Finally back in London, the composer-pianist spent three weeks preparing for what turned out to be his final recital by sitting wrapped in his coat in front of the fire at St James’s Place, attended by London’s leading homeopath and the Royal Physician, a specialist in tuberculosis. A week after the concert, he was on his way home to Parisian exile and death the following year.”

Born Zelazowa Wola, Poland of a French emigrant father and Polish mother, he left Poland aged 20, never to return. Well known and by some controversially for his long romantic liaison with novelist George Sand (Aurore Dudevant) after they separated his health failed and in 1848 he paid a long visit to Britain where he gave his last public performance at the Guildhall. He died in Paris.

chopinfantasie

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

How our data sharing performance will be judged, matters not just today, or in this electoral term but for posterity. The current work-in-progress is not a dress rehearsal for a care.data quick talent show, but the preparations for lifetime performance and at world standard.

How have we arrived where we are now, at a Grand Pause in the care.data performance? I looked at the past, reviewed through the Partridge Review meeting in [part one here] the first half of this post from attending the HSCIC ‘Driving Positive Change’ meeting on July 21st. (official minutes are online via HSCIC >>  here.)

Looking forward, how do we want our data sharing to be? I believe we must not lose sight of classical values in the rush to be centre stage in the Brave New World of medical technology. [updated link  August 3rd]* Our medical datasharing must be above and beyond the best model standards to be acceptable technically, legally and ethically, worldwide. Exercised with discipline, training and precision, care.data should be of the musical equivalent of Chopin.

Not only does HSCIC have a pivotal role to play in the symphony that the Government wishes research to play in the ‘health & wealth’ future of our economy, but they are currently alone on the world stage. Nowhere in the world has a comparable health data set over such length of time, as we do, and none has ever brought in all it’s primary care records into a central repository to merge and link, as is planned with care.data. Sir Kingsley Manning said in the current July/August Pharma Times article, data sharing now has to manage its reputation, just like Big Pharma.

reputation
Pharma Times – July/Aug 2014 http://www.pharmatimes.com/DigitalOnlineArea/digitaleditionlogin.aspx

Countries around the world, will be watching HSCIC, the companies and organisations involved in the management and in the use of our data.  They will be assessing the involvement and reaction of England’s population, to HSCIC’s performance. This performance will help shape what is acceptable, works well and failings will be learned from, by other countries, who will want to do the same in future.

Can we rise to the Challenge to be a world leader in Data Sharing?

If the UK Government wants England to be the world leader in research, we need, not only to be exemplary in how we govern the holding, management and release of data, but also exemplary in our ethics model and expectations of each other in the data sharing process.

How can we expect China [1] with whom the British Government recently agreed £14 billion in trade deals, [2] India, the country to which our GP support services are poised to be outsourced through Steria [3] or any other organisations, governments and universities in other countries which have received data in the past such as the US and Japan, (as seen in the list of recipients excel file [4]) how can we expect them to treat our data with the respect and security it deserves?  We must demand of ourselves, that we outperform to a standard demanded beyond the expectations of the strongest critics. Ethically,  legally and technically.

How can we expect it of them, if our own Government departments: HMRC[5], the Cabinet Office, the Home Office [6] cannot arrange their data management in a first-class manner? They all set the scene. Each set of Big Data does not stand alone in these department silos. They each need to get their act together, if the UK should be a model to follow. [Even more so if we are expected to accept private data sharing at scale: update August 3rd: departmental plans to share across Whitehall].

How the 70 million patient records and years of longitudinal, in depth data already held,  is treated now, will determine the setting for the extractions of future data, whether for care [dot] data, or other regional safe-haven access, and beyond into any national genomics programme.  [updated since first published on July 25th: August 1st a £300M package was announced for the 100K Genome Project.]

Chopin played his last concert in London. It was a magnificent and professional performance, remembered for posterity [7]. Will these highly anticipated programmes bring about success or disaster?

Will data sharing in England be of the level of classical brilliance or downgraded to a common reality show?

There is a risk that by trying to please and pandering to competing, sometimes conflicting self-interests of paying data users, the HSCIC becomes a variety act. Trying to be all things to all comers, it will fail to please the critics, water down its aim of world-class standards and simply not be able to compete on a world stage because the quality of its own data, the support it gets from bona fide research, and the trust of the providers of its material, the public, will be lost.

But outside interests not only influence the performance, but often call the tune. What data is extracted vs what is not? Which reports are funded and which are not? Which diseases and conditions are being addressed by clinical researchers and which are not? Is it a case of some conditions are more equal than others, and if so, where is the transparency in that decision making? Where research institutions accept funding from multi-national institutions whose ethics are not always in line with their own, does it compromise their intellectual independence for the sake of monetary  gain?

And how does this influence outputs of selected research? As this [unrelated] blog argues [8], this is something I feel at risk, “although collaborations with industry are important, so are the freedoms scientists enjoy to explore new ideas unrestricted by commercial arguments.  Academics should be free to work with companies when they want to, but also remain free to choose not to.”

Has the review of the past by the critics brought us  any closer to future next steps?

The majority of the attendees were playing the same score, asking questions for the future, at the HSCIC July 21st meeting. Similar questions came up, were acknowledge but mostly unanswered, and agreed that discussions to move them forward will be had again.

The vast majority asked, how will processes work?  How will good ideas become reality and by when?

Research users asked many similar and related questions. What is a Remote Data Lab? The so-called HRRDL safe data settings which enable secure and transparent use of data in a locked-down setting as opposed to what has happened in the past, giving raw data out by email, excel, CD Rom, via the Cloud to recipients for them to manipulate, store or even re-sell onwards. How would it operate and would users need to physically go to Leeds? How would their use their own tools and bring them to the data? Could they get a fast track pathway for ‘accredited’ data users to speed up the request process? Could they get concrete examples of data sharing released to the public, to show what kinds of data is held, shared and used for different purposes? Lots of questions remain to be answered, but Sir Manning said, “undoubtedly a Data Lab Service would be part of their offering from next year.”

A number of questions concerned consent and opt-out of research purposes. Multi-layered opt outs could offer a best-practice ethical model suggested in the table discussion I sat at, by the hospital data governance officer and HSCIC rep [a proposal in fact made in June  by medConfidential]. But if users opt out of research at HSCIC release level, one researcher asked at another table, would for example, anyone opting out from research purposes therefore be opted out for potential clinical trials in which they could be asked for explicit consent? Another in data governance, suggested a fair processing portal as a tool for ongoing communication and consent management.

It seems the research community sees how strongly the public feel about non-research commercial use. It will encourage opt out of secondary uses. Because of the mistrust in the use by other non-research players, the commercial intermediaries and the insurers (three included in the audit sample have refused to delete data since having been requested by HSCIC to do so) bona fide research may lose out on records, of those who would otherwise be happy to share for medical purposes. But there are options. If these uses are all conflated into a single opt out, but research wants a multiple consent model in order to stand a chance of patients opting in to one area and not the other, then they need to stand up and ask for it. Either by having the secondary purposes restricted or the opt in/out choices expanded.[9] I’ve read here that medConfidential has suggested a local opt out model which could technically and consensually enable this.

Governance questions were raised, including some asked by Data Governance responsible owners at an acute trust. Where would the documented process for proof of consent and the legal basis for data sharing visible and accessible to users? How will HSCIC carry out audits – onsite, by process only, or will they ensure data held by third parties will not make data they receive from HSCIC makes patients identifiable? Could HSCIC help identify a national guideline & tool for decision making on determining a definition of ‘pseudonymous’ data? Could statistics of rejected as well as the approved applications, the details of the applicant requests and reason for rejection be included in the transparent documentation of applications for data release (aka CAG does already today.) This should increase trust in the system and clarify the process for buyers.

Penalties were an oft recurring theme. How would the one strike and out work? What would happen in an organisation in which a commercial partner researcher made a mistake, but data was also used by the same organisation in patient safety audits. Would the organisation be banned from future data use as a whole? Surely an accidental wrong note would not be considered as serious as a malicious breach? Reassuringly I believe from a public point of view, the panel replied, if quietly, they didn’t think the public would see the difference. Clearly another area with lots of questions, and discussion to be had again.

Local patient representative group and charity representatives, asked how the DAAG lay person appointments process would work and be transparent. Considerations for lay involvement should include, they suggested, lay-shadowing to any position, to ensure knowledge-sharing, patient involvement mentoring, and in effect ensuring attendance by a back-up if the lay person was unable to attend.

All these questions need robust consideration and response. the HSCIC plans follow up and more involvement.

Lack of time is an artificial excuse to justify not doing something. It’s not a valid reason why we should not do it at all.

What happens next? – care.data

When it came to care.data, going forward, the panel confirmed that the Care Act 2014 would affect some changes, but details were yet to be determined. There was no more definition given to the broad wording, which even Ben Goldacre had recently expressed on twitter he felt left the purposes so open as to be meaningless. Sir Manning reflected on July 1st at the Health Select Committee how insurers were likely to remain approved users, but it would be a fine definition of purposes which would determine which type of data they could receive.[10] [Q428 Hansard July 1st, below extract:]

“We suggested to them that we wish to gather further information about the use, and we have identified that the use does not include—indeed, it would be illegal—using the data to set individual subscriptions for insurance purposes. My understanding at this stage is that their current use would still be in line with the Care Act.”

There would be a review put  before CAG in September and Parliament, before coming into effect potentially in January. The CAG would be looking at the types of data users and giving guidance on for example, use for commercial purposes by intermediaries, clinical trials and pharma. Seeking “principle” cases, to use as models how sharing should be. But there would be “a question of balancing the interests of commercial companies, the health and wealth of the economy.”

I personally would be interested to hear comment by Dr.Poulter after the Partridge Review, and if he now believes data should be disseminated as widely as it has been. In Parliament in March he gave a statement, at least to me seemed that it was very tightly controlled. The Partridge review shows otherwise. On what will our trust be rebuilt?

“Under section 261, the HSCIC cannot disseminate or share data that could be used to identify an individual other than a provider of care except where there is another legal basis for doing so, which, as we have said, would be only in extreme circumstances such as a civil emergency.” [Hansard, March 25th 2014, Col 57WH] [11]

I look forward to understanding, and it can only make any sense ‘before’ the care.data pathfinder pilots, how the opt out will prevent identifiable data leaving HSCIC and that it will include pseudonymous data, as the care.data PIA has said it is potentially identifiable, and most agree that is an understatement. Will the onward dissemination include ‘amber’ data flows as NHS England indicated in January or has that changed? And when will we see that the opt out really has become more than fine words?

“Moreover, the Government have already introduced the commitment that if someone has concerns about their data being used in such a way, they can ask their GP practice to note their objection and opt out of the system, after which no identifiable data about them will flow from their GP practice to the HSCIC. Directions to the HSCIC under section 254 of the 2012 Act, which are separate from the amendments considered by the House as part of the Care Bill, will ensure that that commitment to patients has legal force.” [Hansard, March 25th 2014, Col 57WH]

For our care.data data management to be world class in future, we need experts to set up the right technical environment, to all want the same acoustics to resonate with everyone inside and outside the hall, and be well disciplined.  All the participants in the shared symphony need to play well together and agree to play to the best of their abilities. They must all be of the same high standards, ethically, technically and legally, and play in harmony. And above all, they must keep listening to both themselves and their critics, to what outside voices are saying. They cannot afford for another flop. But they cannot afford to only get better through practice, hoping it will be alright on the night and carrying on as they have in the past without addressing their known flaws.

They must be absolutely performance ready, before they invite the public back again.

Only when the technical and process framework is tested and final should we public, be invited to come back and give NHS England and HSCIC another chance. It’s not to say there would not be adjustments as a result of pilot learnings, that would be right and proper if there were, but it shouldn’t be guinea pigging real people with real records, if there were significant known weakness or concern for some of the data users as identified in the Partridge Review – on retention, deletion, foreign use, Back Office, or not reaching everyone who should be informed, for example. There is no point in us lining up now to get in, when the performance time and even the programme details are not set.

On hold since February with almost no communications since and no national public debate, where does the care.data programme go from here?

Will our health data sharing be a virtuoso performance, or will we end up with a second rate show, where we will look back and say, we had all the right notes, but played them all in the wrong order? There is also an accredited safe haven consultation, another rushed scoping exercise, which confuses the data sharing debate, conflating clinical and secondary use. But a programme of huge significance and process change. Deadline for feedback until August 8th.

care.data appears to be set on its own artificial timeline for curtain up with a pilot rollout in the autumn, [even though they say there isn't any deadline],  isn’t listening [even though they say they are] {look at the call from the BMA for opt out as an example} and isn’t playing to the same tune at all. They seem to be playing jazz, when the serious datasharing world is calling for Chopin.

Leaders from government and NHS England continue to call for the show to go on regardless of readiness. They appear to want to go ahead to extract, without all these concrete questions addressed, and do not aim higher than to focus on communication to achieve only the minimum that’s required to get past the Data Protection Act legally.  Without technical and process solutions in place at the new Data Controller’s, the HSCIC; then our data will fail to be safe, consensual and transparent, and fail to be fit for the 21st century.

Our data and processes will lose the respect of data sharing bodies not just inside the UK, but worldwide, and on a global stage open to all through social media and the www. If it is not played correctly, it will be set up for misuse by poor players, breach, damage to trust and another performance failure all over again. Why not get this right? It could really put England’s data sharing research capabilities on a world stage like no other. Why press ahead just to make the best of a bad job? We are surely capable of Chopin.

There are many many good reasons to get the responses to Monday’s Driving Positive Change right. It would be wrong and catastrophic for all the existing data users, if we were to push ahead with a large scale extraction, when the system nor process is ready to receive it, with no clear reason at all. It would irrevocably damage the future NHS data management model for all, for the sake of a paper deadline.

Then the critics would indeed have good cause to shut the whole darn theatre down for everyone.

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[1] TTP China business agreement (systems used in the NHS /NPfIT)

[2] the British Government recently agreed £14 billion in trade deals – http://www.conservativehome.com/platform/2014/07/63302.html

[3] India, & outsourcing our GP support services are poised to be outsourced through Steria

[4] foreign countries to which data has been released, as seen in the list of HSCIC Data recipients excel file - List of NHS IC data releases [excel 185kb]

[5] Government data: HMRC plans for data sale http://www.bbc.co.uk/news/uk-27086401

[6] Government data scandal of lost records at the Home Office http://www.theguardian.com/lifeandstyle/2014/jul/19/child-abuse-inquiry-lucy-mangan

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

[8] A blog post I enjoyed on why Universities and Commercial companies collaborate in research [author not connected]

[9] A proposed local opt out model to enable consensual local choice and research by medConfidential https://medconfidential.org/wp-content/uploads/2014/06/2014-06-11-Achieving-local-choice-and-consensual-research-use.pdf

[10] Handling patient data – the Health Select Committee July 1st

[11] [Hansard, March 25th 2014, Col 57WH]

* minor adjustments made 3rd August, to reflect the latest £300M investment news in the 100K Genome Project

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Thinking to some Purpose – a new era, a new look

Regular readers here or on twitter, may notice the new-look.

I’m moving away from The Amateur Book Blogger banner, and will be posting simply as me, as I go on.  The start of the summer holidays seemed as good a day as any, to saunter out into the sunshine on my own.  [I may even see if it's worth updating my resultant twitter handle @TheABB]. The reason? This week, the View From Here Magazine announced it will be closing on November 1st, 2014. After seven  years on the writing team, it is not only the end of an era, but perhaps the start of a something new.

I started on the comms side, announcing writing events and industry news, and later moved into interviews. It’s been an amazing experience. Editor Mike French was a great remote-mentor. We’ve met only once, at the launch of his latest novel, Convergence, in The Dandelion Trilogy.  Mike both enabled and encouraged me to interview some great writers, editors, scouts and publishers, every quarter. I learned something new each time, from every contribution, and had great fun. All of which I enjoyed, but some stand out in the memory more than others, and every one was unique.

I travelled to The London Book Fair in 2010, the year the Icelandic volcanic ash prevented many traveling from abroad by plane.  The resulting bonus, many people’s meeting schedules became unexpectedly less full. I got squeezed in to film a serendipitous  interview with Jamie Byng at Canongate and  spoke with Helen Garnons-Williams, which led to producing a three part interview with her, the then newly head-hunted Editorial Director for Fiction at Bloomsbury UK.

Thank you to all whom I have interviewed since 2006, but also to readers and fellow unpublished writers who supported me, the team, and made the community at The View From Here what it is. With eclectic tastes, I learned much on writing, but also enjoyed the art of the creative collective.

The most recent interview I did for them, was here, with Isabel Allende. In her wide ranging career, it was hard to know what to ask and how to narrow it down, but one thing stays with me, in all she said, on the role of a writer:

“Writers have no obligation to comply with the official story or the official version, their only obligation is with their own consciousness.  Honesty above all.”

The other part of my writing recently has been more akin to her engagement in politics and civil society. I’ve been on twitter really only for the last nine months, throughout the difficult pregnancy of care.data, pronounced care [dot] data. If you missed it, that’s the government proposed scheme to suck up our GP medical records, merge them with data already held at the central Health and Information Centre from our hospital care, and then use the new, richer record for commissioning purposes and potentially more, as yet undefined.  Since our hospital and other health sourced-data is already sold to private companies and will continue to be so in future, but without having asked for informed consent, I’ve been a very skeptical critic and lay voice for positive changes for these wide secondary uses. [In case you've landed here for the first time,  I've a background in tech database implementations, communications and change, and I took it upon myself to fully understand and follow the subject, a year ago when I came across the topic online, by accident.]

It looks now, as though some improvements on past failings will  happen, but much remains undefined in detail, and as we all know, that’s where the devil likes to sup. I look forward to seeing some of the recently discussed changes and definitions in the Care Act, for example, becoming concrete.

So, that’s the reason for the insignificant changes on my part, and should I explain the image? I’ve chosen my favourite coffee mug for my header photo, with my favourite scarf. I use both often. The latter, reminds me a little of Bridget Riley’s op art. As a retro fan that appeals to me. The former, depicts the cover of Susan Stebbing’s most popular work Thinking to some purpose (1939) which was described on the cover of the first Pelican Books edition as being:

“A manual of first-aid to clear thinking, showing how to detect illogicalities in other people’s mental processes and how to avoid them in our own”

The work arose out of a synopsis she wrote for a series of radio broadcasts intended for the BBC. Published on the eve of the Second World War, Stebbing wrote:

“There is an urgent need to-day for the citizens of a democracy to think well. It is not enough to have freedom of the Press and parliamentary institutions. Our difficulties are due partly to our own stupidity, partly to the exploitation of that stupidity, and partly to our own prejudices and personal desires.”

Her words seem very timely.

To borrow from Wikipedia here: “This metaphor seems to me to be appropriate, because potted thinking is easily accepted, is concentrated in form, and has lost the vitamins essential to mental nourishment. You will notice that I have continued  the metaphor by using the word ‘vitamins.’ Do not accept the metaphor too hastily: it must be expanded.”

I wrote about use of language and the need for common sense in its use around our health, as well as food marketing, in a previous post. But on the book, Professor Stebbing [British philosopher 1885- 1943] went on to say:

Potted meat is sometimes a convenient form of food; it may be tasty, it contains some nourishment. But its nutritive value is not equivalent to that of the fresh meat from which it was potted. Also, it must have originally been made from fresh meat, and must not be allowed to grow stale. Similarly a potted belief is convenient; it can be stated briefly, sometimes also in a snappy manner likely to attract attention. A potted belief should be the outcome of a belief that is not potted. It should not be held on to when circumstances have changed and new factors have come to light. We should not allow our habits of thought to close our minds, nor rely upon catch-words to save ourselves from the labour of thinking. Vitamins are essential for the natural growth of our bodies; the critical questioning at times of our potted beliefs is necessary for the development of our capacity to think to some purpose.”

So here’s to that, my ‘critical questioning’ may have shifted from one arena into another, but I hope I continue ‘thinking to some purpose’.

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The Universal Free school meal Programme applied. Free, but what will it really cost?

I have children who are entitled, come September, to the universal free school meal programme. Department of Education advice came out last week. See here >>universal infant free school meals.

I wonder whether this will bring back a national treasure to benefit those who need it most, or is it just a Pandora’s box of problems?

The new system, raises two concerns for me, over which I now have little control or choice.

Firstly, on nutritional decision making. I fundamentally disagree with the blanket ‘low fat’ approach which can also mean ‘replace fat with fake stuff for flavour’. I hope it reflects the plan only in milk, and not across all the food groups. It fails to recognise that not all fats are equal.

Whilst I fully understand the popular and State drive for cutting down obesity levels, cutting out fat across all the food groups may not be the key to national health. This ‘low-fat is good’ approach is controversial, and low fat in particular in dessert, replaced with artificial sweeteners, and also potentially harmful, is a false choice. I believe that a gentle paleo approach to food, back to basics, is a better choice. Throw out artificial things, and eat almost everything that is natural, in moderation. Not all fats are the same. Children who are growing, need the kind of fat that is in milk. It’s not the same as chips.

The whole programme of child health in school is based on sweeping generalisations in my ‘how-I-see-it-as-a-mother’ view.  We’re told an awful lot of twaddle of how our kids should eat and exercise by state-sent leaflets in book bags. Add to that, the fact that the BMI comparison is flawed, and its communications to parents method is fundamentally flawed. (Letters saying your perfectly healthy, well proportioned child is obese, or underweight, partly due to its tool as an average cross group measure, in the National Child Measurement Programme (NCMP) anyway. But that’s another, longer story.) It’s no wonder parents are confused, not knowing the best thing to do on these school meals or not.

“On 17 June 2014 the department announced a new set of simplified standards. The new standards are designed to make it easier for school cooks to create imaginative, flexible and nutritious menus. They will be mandatory for all maintained schools, academies that opened prior to 2010 and academies and free schools entering into a funding agreement from June 2014, and will come into force from January 2015.
One significant change in the new standards is that lower fat milk or lactose reduced milk must, from January 2015 be available for drinking at least once a day during school hours. The milk must be offered free of charge to pupils entitled to free school meals, and to all pupils where it forms part of the free school lunch to infants.”

There is a lot of conflicting information about milk consumption and asthma, so I’d like to see more information around this, on expected benefits overall. The milk given to them to drink often is UHT, skimmed and processed. If you take all the good stuff out of the milk, is it doing the kids who drink it any good? I’d like to know.

And secondly, on cost.

Currently, my children every week, eat both hot lunches and packed lunches from home. I pay the school’s private provider, for regular, hot lunches three days a week, and I provide packed lunch on two. (I can see ahead of time online, what’s on the provider’s menu, and I can plan and coordinate with the rest of what and how we eat, according to our family schedule.)

From September, I will no longer be able to choose to book and pay for those meals myself. And I will no longer be able to choose for some days and not others. It’s all or nothing.

The local provider will also no longer permit parents of  Reception-Year 2 children to book meals and pay for them, so even if I am fortunate enough and wanted to, I can’t opt out of the state system and pay for only those meals my children will actually eat.

The result is, if I want to continue the mix of hot and packed lunch choice I make for them, based on our family life, schedule and the nutritional content of what I want them to eat, I am required to sign them up for all five days, and either they get the imposed routine and eat more hot dinners – or carry on with our current set-up and two days a week the other hot lunches will go to waste.

However having spoken to my local school meal service today, they confirmed that after 4 weeks they plan to have a review of waste, and cut back on food provided.

The net result, the local private provider will receive more money from the State, for my children’s hot lunches, than I pay myself now. And likely as not, there will be food wasted as well, because the providers will need to allow that some children may take it up all days.

I understand that to administer detailed choices would potentially be costly. From September, schools will need to administer instead of me doing it myself, how many children are taking up the meals, and any changes in numbers week on week.

However, it need not increase the admin cost to schools or state, if I could continue to book for my children, as I do now, selecting their days and meals in advance, there would be a more cost effective use of our State money, without any change in administration. It would be up to the provider to bill as used, not blanket. Surely in these days of electronic charging, not hard, and could be made without manual intervention by the state, except for regular audits, which will need to happen anyway in any well governed accounting system.

It feels as though the Government simply doesn’t trust us to feed our children properly. I think I do a fairly good job. And before anyone has a go at making it a class issue, I fundamentally disagree. You get good and bad parenting skills across the board. No one is perfect. But I do believe that parents will always try and do the best to feed their children. There are of course the rare and horrific Daniel P. exceptions whose whole care was failed by parents and State alike. They will always exist and we as a society and State need to think how they can be best addressed. But is a rushed and inflexible system of school meals going to really address those exceptions? I don’t think so. That’s not what this is about and we shouldn’t let media hype of individual suffering railroad discussions.

Why not have kept universal child benefit for all instead? Those entitled to free school meals, were then and would still be now. I welcome anything that will help families feed their children well. The work by the Trussel Trust and others, shows what desperate measures are needed to help children who need it most.

But why impose it via this method on all without rigorous planing and evaluation? My school certainly doesn’t feel it has happened, and has had a ‘a couple of emails”.  And they are a great primary school who care about things being done well. At the end of summer term,  ‘it’s a bit of an unknown.’

I now have to decide, to keep my kids in hot dinners, take them out, or keep our as-is preferred mix but feel wasteful.

Where do you draw the line between support  and interference in our family life?

You could say don’t look a gift horse in the mouth, but it’s what is going into my children’s mouths that matters most. Jamie Oliver did his darnedest to educate and bring in change, showing school meals needed improvement in quality across the board. What has happened to those quality improvements he championed? Abandoned in free school & political dogma. Where is the analysis for true quality change, rather than change for a point of policy? Is our children’s health a political football, which is being given as a concession in this Parliament, now rushed through to get checked-off, without being properly checked out first?

I’m not sure I trust the state imposed food standards to do a good job if the funding should be reduced in future, quality will fall again, back to the bad old pre-Jamie days. Quality must be paramount if we are now expecting to see a larger portion of society, starting out with school meals, fed by its standards.

It seems there were pilots and trials but we haven’t heard much about them. There is plenty of history, but where is current discussion? I agree with David Laws, on the closure of school kitchens, but this mother believes current infrastructure and education should be fundamental to this programme, not coming in later as a secondary support measure. I wouldn’t normally choose to link to the Mail, but no other broadsheet seems to have covered it since the Department for Education guidance was issued last week.

Mr. Laws said,

“It is going to be one of the landmark social achievements of this coalition government – good for attainment, good for health, great for British food, and good for hard working families.

Ignore the critics who want to snipe from the sidelines.”

I don’t want to be a critic from the sidelines, I’d like to be an informed citizen and a parent with choice. This is a consumer choice and health issue, having an effect on a practical aspect of my parenthood. It’s not a tenet of education substance. Like these people and their FOIs, I want to ask and understand. How will it affect the majority? Will this have a positive effect on the nutrition children get, which may be inadequate today? What guarantees are there that adequate food safety and quality issues are properly and independently governed? Will it be overall less costly and beneficial to children and parents? Will it reduce stigma? Will it increase hot dinners consumed and reduce packed lunch intake? (So much less healthy, we are told.) Is the cost worth the benefit for a minority or even for the many? Will it benefit our national children’s health?

Free, but what will it really cost?

Honestly, I don’t know. But that’s my main concern. It’s being done in such a rush, I don’t think anyone knows.

Thinking to some purpose