Category Archives: privacy

human rights, politics, privacy, surveillance

Nothing to fear, nowhere to hide – a mother’s attempt to untangle UK surveillance law and programmes

“The Secret Service should start recruiting through Mumsnet to attract more women to senior posts, MPs have said.”
[SkyNews, March 5, 2015]

Whilst we may have always dreamed of being ‘M’, perhaps we can start by empowering all Mums to understand how real-life surveillance works today, in all our lives, homes and schools.

In the words of Franklin D. Roosevelt at his 1933 inaugural address:

“This is preeminently the time to speak the truth, the whole truth, frankly and boldly…

“Let me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

It is hard to know in the debate in the ‘war on terror’, what is truthful and what is ‘justified’ fear as opposed to ‘nameless and unreasoning.’

To be reasoned, we need to have information to understand what is going on and it can feel that picture is complex and unclear.

What concrete facts do you and I have about terrorism today, and the wider effects it has on our home life?

If you have children in school, or are a journalist, a whistleblower, lawyer or have thought about the effects of the news recently, it may affect our children or any of us in ways which we may not expect.

It might surprise you that it was surveillance law that was used to track a mother and her children’s [1] movements when a council wasn’t sure if her school application was for the correct catchment area. [It legally used the Regulation of Investigatory Powers Act 2000, (RIPA) [2]

Recent headlines are filled with the story of three more girls who are reported to have travelled to Syria.

As a Mum I’d be desperate for my teens, and I cannot imagine what their family must feel. There are conflicting opinions, and politics,  but let’s leave that aside. These girls are each somebody’s daughter, and at risk.

As a result MPs are talking about what they should be teaching in schools. Do parents and citizens agree, and do we know what?

Shadow business secretary Chuka Umunna, Labour MP told Pienaar’s Politics on BBC Radio 5 Live: “I really do think this is not just an issue for the intelligence services, it’s for all of us in our schools, in our communities, in our families to tackle this.”

Justice Minister Simon Hughes told Murnaghan on Sky News it was important to ensure a counter-argument against extremism was being made in schools and also to show pupils “that’s not where excitement and success should lie”. [BBC 22 February 2015]

There are already policies in schools that touch all our children and laws which reach into our family lives that we may know little about.

I have lots of questions what and how we are teaching our children about ‘extremism’ in schools and how the state uses surveillance to monitor our children’s and our own lives.

This may affect all schools and places of education, not those about which we hear stories about in the news, so it includes yours.

We all want the best for our young people and security in society, but are we protecting and promoting the right things?

Are today’s policies in practice, helping or hardening our children’s thinking?

Of course I want to see that all our kids are brought up safe. I also want to bring them up free from prejudice and see they get equal treatment and an equal start in life in a fair and friendly society.

I think we should understand the big picture better.

1. Do you feel comfortable that you know what is being  taught in schools or what is done with information recorded or shared by schools or its proposed expansion to pre-schools about toddlers under the Prevent programme?.

2. Do government communications’ surveillance programmes in reality, match up with real world evidence of need, and how is it measured to be effective?

3. Do these programmes create more problems as side-effects we don’t see or don’t measure?

4. If any of our children have information recorded about them in these programmes, how is it used, who sees it and for what purposes?

5. How much do we know about the laws brought in under the banner of ‘counter-terror’ measures, and how they are used for all citizens in everyday life?

We always think unexpected things will happen to someone else, and everything is rightfully justified in surveillance, until it isn’t.

Labels can be misleading.

One man’s terrorist may be another’s freedom fighter.

One man’s investigative journalist is another’s ‘domestic extremist.’

Who decides who is who?

Has anyone asked in Parliament: Why has religious hate crime escalated by 45% in 2013/14 and what are we doing about it? (up 700 to 2, 273 offences, Crime figures [19])

These aren’t easy questions, but we shouldn’t avoid asking them because it’s difficult.

I think we should ask: do we have laws which discriminate by religion, censor our young people’s education, or store information about us which is used in ways we don’t expect or know about?

Our MPs are after all, only people like us, who represent us, and who make decisions about us, which affect us. And on 7th May, they may be about to change.

As a mother, whoever wins the next General Election matters to me because it will affect the next five years or more, of what policies are made which will affect our children, and all of us as citizens.

It should be clear what these programmes are and there should be no reason why it’s not transparent.

“To counter terrorism, society needs more than labels and laws. We need trust in authority and in each other.”

We need trust in authority and in each other in our society, built on a strong and simple legal framework and founded on facts, not fears.

So I think this should be an election issue. What does each party plan on surveillance to resolve the issues outlined by journalists, lawyers and civil society? What applied programmes does each party see that will be, in practical terms: “for all of us in our schools, in our communities, in our families to tackle this.”

If you agree, then you could ask your MP, and ask your prospective parliamentary candidates. What is already done in real life and what are their future policies?

Let’s understand ‘the war on terror’ at home better, and its real impacts. These laws and programmes should be transparent, easy to understand, and not only legal, but clearly just, and proportionate.

Let’s get back to some of the basics, and respect the rights of our children.

Let’s start to untangle this spaghetti of laws; the programmes, that affect us in practice; and understand their measures of success.

Solutions to protecting our children, are neither simple or short term. But they may not always mean more surveillance.

Whether the Secret Service will start recruiting through Mumsnet or not, we could start with better education of us all.

At very least, we should understand what ‘surveillance’ means.

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If you want to know more detail, I look at this below.

The laws applied in Real Life

Have you ever looked at case studies of how surveillance law is used?

In  one case, a mother and her children’s [1] movements were watched and tracked when a council wasn’t sure if her school application was for the correct catchment area. [It legally used the Regulation of Investigatory Powers Act 2000, (RIPA) [2]

Do you think it is just or fair that  a lawyer’s conversations with his client [3] were recorded and may have been used preparing the trial – when the basis of our justice system is innocent until proven guilty?

Or is it right that journalists’ phone records could be used to identify people by the police, without telling the journalists or getting independent approval, from a judge for example?

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These aren’t theoretical questions but stem from real-life uses of laws used in the ‘counter terrorism’ political arena and in practice.

Further programmes store information about every day people which we may find surprising.

In November 2014 it was reported that six British journalists [4] had found out personal and professionally related information had been collected about them, and was stored on the ‘domestic extremist’ database by the Metropolitan Police in London.

They were not criminal nor under surveillance for any wrongdoing.

One of the journalists wrote in response in a blog post on the NUJ website [5]:

“…the police have monitored public interest investigations in my case since 1999. More importantly if the police are keeping tabs on a lightweight like myself then they are doing the same and more to others?”

Ever participated in a protest and if not reported on one?

‘Others’ in that ‘domestic extremist list’ might include you, or me.

Current laws may be about to change [6] (again) and perhaps for the good, but will yet more rushed legislation in this area be done right?

There are questions over the detail and what will actually change. There are multiple bills affecting security, counter-terrorism and data access in parliament, panels and reviews going on in parallel.

The background which has led to this is the culmination of lots of concern and pressure over a long period of time focuses on one set of legal rules, in the the Regulation of Investigatory Powers Act (RIPA).

The latest draft code of practice [7] for the Regulation of Investigatory Powers Act (RIPA) [8] allows the police and other authorities to continue to access journalists’ and other professionals’ communications without any independent process or oversight.

‘Nothing to hide, nothing to fear’, is a phrase we hear said of surveillance but as these examples show, its use is widespread and often unexpected, not in extremes as we are often told.

David Cameron most recently called for ever wider surveillance legislation, again in The Telegraph, Jan 12 2015  saying:[9]

“That is why in extremis it has been possible to read someone’s letter, to listen to someone’s telephone, to mobile communications.”

Laws and programmes enable and permit these kinds of activity which are not transparent to the broad public. Is that right?

The Deregulation bill has changes, which appear now to have been amended to keep the changes affecting journalists in PACE [10] laws after all, but what effects are there for other professions and how exactly will this change interact with further new laws such as the Counter Terrorism and Security Act [p20]? [11]

It’s understandable that politicians are afraid of doing nothing, if a terrorist attack takes place, they are at risk of looking like they failed.

But it appears that politicians may have got themselves so keen to be seen to be doing ‘something’ in the face of terror attacks, that they are doing too much, in the wrong places, and we have ended up with a legislative spaghetti of simultaneous changes, with no end in sight.

It’s certainly no way to make legal changes understandable to the British public.

Political change may come as a result of the General Election. What implications will it have for the applied ‘war-on-terror’ and average citizen’s experience of surveillance programmes in real life?

What do we know about how we are affected? The harm to some in society is real, and is clearly felt in some, if not all communities. [12]

Where is the evidence to include in the debate, how laws affect us in real life and what difference they make vs their intentions?

Anti-terror programmes in practice; in schools & surgeries

In addition to these changes in law, there are a number of programmes in place at the moment.

The Prevent programme?[16] I already mentioned above.

Its expansion to wider settings would include our children from age 2 and up, who will be under an additional level of scrutiny and surveillance [criticism of the the proposal has come across the UK].

How might what a three year old says or draws be interpreted, or recorded them about them, or their family? Who accesses that data?

What film material is being produced that is: ” distributed directly by these organisations, with only a small portion directly badged with government involvement” and who is shown it and why? [Review of Australia‘s Counter Terror Machinery, February 2015] [17]

What if it’s my child who has something recorded about them under ‘Prevent’? Will I be told? Who will see that information?  What do I do if I disagree with something said or stored about them?

Does surveillance benefit society or make parts of it feel alienated and how are both its intangible cost and benefit measured?

When you combine these kinds of opaque, embedded programmes in education or social care  with political thinking which could appear to be based on prejudice not fact [18], the outcomes could be unexpected and reminiscent of 1930s anti-religious laws.

Baroness Hamwee raised this concern in the Lords on the 28th January, 2015 on the Prevent Programme:

“I am told that freedom of information requests for basic statistics about Prevent are routinely denied on the basis of national security. It seems to me that we should be looking for ways of providing information that do not endanger security.

“For instance, I wondered how many individuals are in a programme because of anti-Semitic violence. Over the last day or two, I have been pondering what it would look like if one substituted “Jewish” for “Muslim” in the briefings and descriptions we have had.” Baroness Hamwee:  [28 Jan 2015 : Column 267 -11]

“It has been put to me that Prevent is regarded as a security prism through which all Muslims are seen and that Muslims are suspect until proved otherwise. The term “siege mentality” has also been used.

“We have discussed the dangers of alienation arising from the very activities that should be part of the solution, not part of the problem, and of alienation feeding violence. […]

“Transparency is a very important tool … to counter those concerns.”

Throughout history good and bad are dependent on your point of view. In 70s London, but assuming today’s technology, would all Catholics have come sweepingly under this extra scrutiny?

“Early education funding regulations have been amended to ensure that providers who fail to promote the fundamental British values of democracy, the rule of law, individual liberty and mutual respect and tolerance for those with different faiths and beliefs do not receive funding.” [consultation guidance Dec 2014]

The programme’s own values seem undermined by its attitudes to religion and individual liberty. On universities the same paragraph on ‘freedom of speech’ suggests restrictive planning measures on protest meetings and IT surveillance for material accessed for  ‘non-research purposes’.

School and university is a time when our young people explore all sorts of ideas, including to be able to understand and to criticise them. Just looking at material online should not necessarily have any implications.  Do we really want to censor what our young people should and should not think about, and who is deciding the criteria?

For families affected by violence, nothing can justify their loss and we may want to do anything to justify its prevention.

But are we seeing widespread harm in society as side effects of surveillance programmes?

We may think we live in a free and modern society. History tells us all too easily governments can change a slide into previously unthinkable directions. It would be complacent to think, ‘it couldn’t happen here.’

Don’t forget, religious hate crime escalated by 45% in 2013/14 Crime figures [19])

Writers self-censor their work.  Whistleblowers may not come forward to speak to journalists if they feel actively watched.

Terrorism is not new.

Young people with fervour to do something for a cause and going off ‘to the fight’ in a foreign country is not new.

In the 1930s the UK Government made it illegal to volunteer to fight in Spain in the civil war, but over 2,000 went anyway.

New laws are not always solutions. especially when ever stricter surveillance laws, may still not mean any better accuracy of terror prevention on the ground. [As Charlie Hebdo and Copenhagen showed. in these cases the people involved were known to police. In the case of Lee Rigby it was even more complex.]

How about improving our citizens’ education and transparency about what’s going on & why, based on fact and not fear?

If the state shouldn’t nanny us, then it must allow citizens and parents the transparency and understanding of the current reality, to be able to inform ourselves and our children in practical ways, and know if we are being snooped on or surveillance recorded.

There is an important role for cyber experts in/and civil society to educate and challenge MPs on policy. There is also a very big gap in practical knowledge for the public, which should be addressed.

Can  we trust that information will be kept confidential that I discuss with my doctor or lawyer or if I come forward as a whistleblower?

Do I know whether my email and telephone conversations, or social media interactions are being watched, actively or by algorithms?

Do we trust that we are treating all our young people equally and without prejudice and how are we measuring impact of programmes we impose on them?

To counter terrorism, society needs more than labels and laws

We need trust in authority and in each other in our society, built on a strong and simple legal framework and founded on facts, not fears.

If the Prevent programme is truly needed at this scale, tell us why and tell us all what our children are being told in these programmes.

We should ask our MPs even though consultation is closed, what is the evidence behind the thinking about getting prevent into toddler settings and far more? What risks and benefits have been assessed for any of our children and families who might be affected?

Do these efforts need expanded to include two-year-olds?

Are all efforts to keep our kids and society safe equally effective and proportionate to potential and actual harm caused?

Alistair MacDonald QC, chairman of the Bar Council, said:

‘As a caring society, we cannot simply leave surveillance issues to senior officers of the police and the security services acting purportedly under mere codes of practice.

What is surely needed more than ever before is a rigorous statutory framework under which surveillance is authorised and conducted.”

Whether we are disabled PIP protesters outside parliament or mothers on the school run, journalists or lawyers, doctors or teachers, or anyone, these changes in law or lack of them, may affect us. Baroness Hamwee clearly sees harm caused in the community.

Development of a future legislative framework should reflect public consensus, as well as the expert views of technologists, jurists, academics and civil liberty groups.

What don’t we know? and what can we do?

According to an Ipsos MORI poll for the Evening Standard on October 2014 [20] only one in five people think the police should be free to trawl through the phone records of journalists to identify their sources.

Sixty-seven per cent said the approval of a judge should be obtained before such powers are used.

No one has asked the public if we think the Prevent programme is appropriate or proportionate as far as I recall?

Who watches that actions taken under it, are reasonable and not reactionary?

We really should be asking; what are our kids being shown, taught, informed about or how they may be  informed upon?

I’d like all of that in the public domain, for all parents and guardians. The curriculum, who is teaching and what materials are used.

It’s common sense to see that young people who feel isolated or defensive are less likely to talk to parents about their concerns.

It is a well known quote in surveillance “Nothing to hide, nothing to fear.” But this argument is flawed, because information can be wrong.

‘Nothing to fear, nowhere to hide’, may become an alternative meme we hear debated again soon, about surveillance if the internet and all communications are routinely tracked, without oversight.

To ensure proper judicial oversight in all these laws and processes – to have an independent judge give an extra layer of approval – would restore public trust in this system and the authority on which it depends.

It could pave the way for a new hope of restoring the checks and balances in many governance procedures, which a just and democratic society deserves.

As Roosevelt said: “let me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror.”

 

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[On Channel4OD: Channel 4 – Oscar winning, ‘CitizenFour’  Snowden documentary]

References:

[1] The Guardian, 2008, council spies on school applicants

[2] Wikipedia RIPA legislation

[3] UK admits unlawfully monitoring communications

[4] http://www.theguardian.com/uk-news/2014/nov/20/police-legal-action-snooping-journalists

[5] Journalist’s response

[6] SOS Campaign

[7] RIPA Consultation

[8] The RIPA documents are directly accessible here

[9] The Telegraph

[10] Deregulation Bill

[11] Counter Terrorism and Security Act 2015

[12] Baroness Hamwee comments in the House of Lords [Hansard]

[13] Consultation response by charity Children in Scotland

[14] The Telegraph, Anti-terror plan to spy on toddlers ‘is heavy-handed’

[15] GPs told to specify counter terrorism leads [Prevent]

[16] The Prevent programme, BBC / 2009 Prevent programme for schools

[17] Review of Australia’s CT Machinery

[18] Boris Johnson, March 2014

[19] Hate crime figures 2013-14

[20] Ipsos MORI poll, October 2014

 

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 image credit: ancient history

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On Being Human – moral and material values

The long running rumours of change afoot on human rights political policy were confirmed recently, and have been in the media and on my mind since.

Has human value become not just politically acceptable, but politically valuable?

Paul Bernal in his blog addressed the subject which has been on my mind, ‘Valuing the Human’ and explored the idea, ‘Many people seem to think that there isn’t any value in the human, just in certain kinds of human.’

Indeed, in recent months there appears to be the creation of a virtual commodity, making this concept of human value “not just politically acceptable, but politically valuable.” The concept of the commodity of human value, was starkly highlighted by Lord Freud’s recent comments, on human worth. How much a disabled person should earn was the focus of the remarks, but conflated the price of labour and human value.

European Rights undermined

Given the party policy announcements and the response by others in government or lack of it, it is therefore unsurprising that those familiar with human rights feel they will be undermined in the event that the policy proposals should ever take effect. As the nation gears up into full electioneering mode for May 2015, we have heard much after party speeches, about rights and responsibilities in our dealings with European partners, on what Europe contributes to, or takes away from our sovereignty in terms of UK law. There has been some inevitable back-slapping and generalisation in some quarters that everything ‘Europe’ is bad.

Whether or not our state remains politically within the EU may be up for debate, but our tectonic plates are not for turning. So I find it frustrating when politicians speak of or we hear of in the media, ‘pulling out of Europe’ or similar.

This conflation of language is careless,  but I fear it is also dangerous in a time when the right wing fringe is taking mainstream votes and politicians in by-elections. Both here in the UK and in other European countries this year, far right groups have taken significant votes.

Poor language on what is ‘Europe’ colours our common understanding of what ‘Europe’ means, the nuances of the roles organisational bodies have, for example the differences between the European Court of Human Rights and the European Court of Justice, and their purposes are lost entirely.

The values imposed in the debate are therefore misaligned with the organisations’ duties, and all things ‘European’ and organisations  are tarred with the same ‘interfering’ brush and devalued.

Human Rights were not at their heart created by ‘Europe’ nor are they only some sort of treaty to be opted out from, [whilst many are enshrined in treaties and Acts which were, and are] but their values risk being conflated with the structures which support them.

“A withdrawal from the convention could jeopardise Britain’s membership of the EU, which is separate to the Council of Europe whose members are drawn from across the continent and include Russia and Ukraine. Membership of the Council of Europe is a requirement for EU member states.” [Guardian, October 3rd – in a clearly defined article]

The participation in the infrastructure of ‘Brussels’ however, is convenient to conflate with values; a loss of sovereignty, loss of autonomy, frivoulous legislation. Opting out of a convention should not mean changing our values. However it does seem the party attitude now on show, is seeking to withdraw from the convention. This would mean withdrawing the protections the structure offers. Would it mean withdrawing rights offered to all citizens equally as well?

Ethical values undermined

Although it varies culturally and with few exceptions, I think we do have in England a collective sense of what is fair, and how we wish to treat each others as human beings. Increasingly however, it feels as though through loose or abuse of language in political debate we may be giving ground on our ethics. We are being forced to bring the commodity of human value to the podium, and declare on which side we stand in party politics. In a time of austerity, there is a broad range of ideas how.

Welfare has become branded ‘benefits’. Migrant workers, ‘foreigners’ over here for ‘benefit tourism’. The disabled labeled ‘fit for work’ regardless of medical fact. It appears, increasingly in the UK, some citizens are being measured by their economic material value to contribute or take away from ‘the system’.

I’ve been struck by the contrast coming from 12 years abroad, to find England a place where the emphasis is on living to work, not working to live. If we’re not careful, we see our personal output in work as a measure of our value. Are humans to be measured only in terms of our output, by our productivity, by our ‘doing’ or by our intrinsic value as an individual life? Or simply by our ‘being’? If indeed we go along with the concept, that we are here to serve some sort of productive goal in society on an economic basis, our measurement of value of our ‘doing’, is measured on a material basis.

“We hear political speeches talking about ‘decent, hardworking people’ – which implies that there are some people who are not as valuable.”

I strongly agree with this in Paul’s blog. And as he does, disagree with its value statement.

Minority Rights undermined

There are minorities and segments of society whose voice is being either ignored, or actively quietened. Those on the outer edge of the umbrella ‘society’ offers us, in our collective living, are perhaps least easily afforded its protections. Travelers, those deemed to lack capacity, whether ill, old or young, single parents, or ‘foreign’ workers, to take just some examples.

I was told this week that the UK has achieved a  first. It was said, we are the first ‘first-world’ country under review by the CPRD for human rights abuse of the disabled. Which cannot be confirmed nor denied by the UN but a recent video indicated.

This is appalling in 21st century Britain.

Recently on Radio 4 news I heard of thousands of ESA claimants assigned to work, although their medical records clearly state they are long term unfit.

The group at risk highlighted on October 15th in the Lords, in debate on electoral records’ changes [col 206]  is women in refuges, women who feel at risk. As yet I still see nothing to assure me that measures have been taken to look after this group, here or for care.data.{*}

These are just simplified sample groups others have flagged at risk. I feel these groups’ basic rights are being ignored, because they can be for these minorities. Are they viewed as of less value than the majority of ‘decent, hardworking people’ perhaps, as having less economic worth to the state?

Politicians may say that any change will continue to offer assurances:
“We promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society.”

But I simply don’t see it done fairly for all.

I see society being quite deliberately segmented into different population groups, weak and strong. Some groups need more looking after than others, and I am attentive when I hear of groups portrayed as burdens to society, the rest who are economically ‘productive’.

Indeed we seem to have reached a position in which the default position undermines the rights of the vulnerable, far from offering additional responsibilities to those who should protect them.

This stance features often in the media discussion and in political debate, on health and social care. DWP workfare, JSA, ‘bedroom tax’ to name but a few.


How undermining Rights undermines access

So, as the NHS England five year forward plan was announced recently, I wonder how the plan for the NHS and the visions for the coming 5 year parliamentary terms will soon align?

There is a lot of talking about plans, but more important is what happens as a result not of what we say, but of what we do, or don’t do. Not only for future, but what is already, today.

Politically, socially and economically we do not exist in silos. So too, our human rights which overlap in these areas, should be considered together.

Recent years has seen a steady reduction of rights to access for the most vulnerable in society. Access to a lawyer or judicial review has been made more difficult through charging for it.  The Ministry of Justice is currently pushing for, but losing it seems their quest in the Lords, for changes to the judicial review law.

If you are a working-age council or housing association tenant, the council limits your housing benefit claim if it decides you have ‘spare’ bedrooms. Changes have hit the disabled and their families hardest. These segments of the population are being denied or given reduced access to health, social and legal support.

Ethical Values need Championed

Whilst it appears the state increasingly measures everything in economic value, I believe the public must not lose sight of our ethical values, and continue to challenge and champion their importance.

How we manage our ethics today is shaping our children. What do we want their future to be like? It will also be our old age. Will we by then be measured by our success in achievement, by what we ‘do’, by what we financially achieved in life, by our health, or by who we each are? Or more intrinsically, values judged even, based on our DNA?

Will it ever be decided by dint of our genes, what level of education we can access?

Old age brings its own challenges of care and health, and we are an aging population. Changes today are sometimes packaged as shaping our healthcare fit for the 21st century.

I’d suggest that current changes in medical research and the drivers behind parts of the NHS 5YP vision will shape society well beyond that.

  • We have a universal human right to healthcare  for all
  • We have a free-at-the-point-of-provision National Health Service in England, how will the plan maintain that and at the same time,
  • We expect science and technology in medicine to drive forward improvements in life quality, care and treatments.

What restrictions do we place on value and how are moral and material values to play out together? Are they compatible or in competition?

Because there is another human right we should remember in healthcare, that of striving to benefit from scientific improvement.

This is an area in which the rights of the vulnerable and the responsibilities to uphold them must be clearer than clear.

In research if Rights are undermined, it may impact Responsibilities for research

I would like to understand how the boundary is set of science and technology and who sets them on what value basis in ethics committees and more. How does it control or support the decision making processes which runs in the background of NHS England which has shaped this coming 5 year policy?

It appears there are many decisions on rare disease, on commissioning,  for example, which despite their terms of reference, see limited or no public minutes, which hinders a transparency of their decision making.

The PSSAG has nothing at all. Yet they advise on strategy and hugely significant parts of the NHS budget.

Already we see fundamental changes of approach which appear to have economic rather than ethical reasons behind them. This in stem-cell banking, is a significant shift for the state away from the absolute belief in the non-commercialisation of human tissue, and yet little public debate has been encouraged.

There is a concerted effort from research bodies, and from those responsible for our phenotype data {*}, to undermine the coming-in-2015, stronger, European data protection and regulation, with attempt to amend EU legislation in line with [less stringent] UK policy. Policy which is questioned by data experts on the use of pseudonymisation for example.

How will striving to benefit from scientific improvement overlap with material values of ‘economic function’ is clear when we hear often that UK Life Sciences are the jewel in the crown of the UK economy? Less spoken of, is how this function overlaps with our moral values.

“We’ve got to change the way we innovate, the way that we collaborate, and the way that we open up the NHS.” [David Cameron, 2011]

In this five year period ahead, in which the coming parliamentary and NHS Forward Plan will coexist, the Genomics England Ltd. plan mentioned in the 5YP is due to conclude in 2017 having mapped 100,000 genomes, of about 35K patients and 40K of their relatives.

We should be both optimistic and ambitious for the further advances that lie within our reach. Medicine is becoming more tailored to the individual.”

These medical advances will demand we make wise ethical decisions, and to do that we must be informed. I’ll consider this more in another post, On Being Human : Part Two.

Consider the current changes in Rights underway and changes in UK regulation together, and factor in what change any further changes in European legislation may mean.

In the mean time, I ask that you consider the changing political landscape in which current changes to legislation are affecting the market, the commercialisation of different areas of activity and the desirability of ‘the promotion of economic growth.’

What moral rights citizens rights will have, may be about to come into direct conflict with material values, and the balance weighted in favour of the material, strengthened a statutory footing.

Today, I suggest whilst we hear so often of material values, we must also consider our own moral values and those of the collective decision making parliamentary and regulatory bodies. We must pay attention to how language is presenting and packaging the discussion, whether in health, politics and economics.

How are certain individuals treated or their needs catered for as a certain part of society, and are all to be treated equally, with access to their rights? If not, where do you draw the line?

What value do we place on being human?

We must find our own moral compass to find a State standpoint on whether we see human worth as a commodity, or whether it should be.

Where will the future balance lie between material and moral rights?

Because the current direction of travel is clear. Everything has a price.

But at what cost?

**** Relevant for research background {*}:

The last six months of  my blog ‘thinking to some purpose’ has been spent doing my best to raise concerns from the public on care.data, in the hope of making a positive difference.

For anyone less familiar with it, this is the initiative to extract and use our confidential GP records for purposes other than direct care. Those concerns remain unanswered, so for my summary,  see here, my six month round up.

Whilst care.data announced that the CCGs had been selected in which GP practices will pilot care.data, but further facts remain unclear what exactly what they will pilot [communications or going also to extraction] or when. For both the public in those locations and elsewhere, we can only wait and see, how long, is an unknown.

#caredata, activism, care.data, choice, engagement, family, HSCIC, leadership, leaflet, privacy

Patient questions on care.data – an open letter

Dear NHS England Patients & Information Directorate,

We’ve been very patient patients in the care.data pause. Please can we have some answers now?

I would like to call for greater transparency and openness about the promises made to the public, project processes & policies and your care.data communication plans.

In 2013, in the Health Service Journal Mr. Kelsey wrote:

“When patients are ignored, they are most at risk; that was the central conclusion of the report by Robert Francis into Stafford hospital.

Don Berwick, in his safety review, said the NHS should be “engaging, empowering and hearing patients and their carers all the time.

“That has been my mission since I started as National Director for Patients and Information: to support health and care services transform transparency and participation.“

HSJ, 10th December 2013

It is time to walk-the-talk for care.data under this banner of transparency, participation and open government.

Response to the Listening exercises

The care.data listening phase, introduced by the pause announced on February 18th, has captured a mass of questions, the majority of which still remain unaddressed.

At one of these sessions, [the 1-hr session on June 17th Open House, linking ca. 100 people at each of the locations in Basingstoke, Leicester, London, and York] participants were promised that our feedback would be shared with us later in the summer, and posted online. After the NHS AGM on Sept 18th I was told it would happen ‘soon’. It is still not in the public domain.

At every meeting all the unanswered questions, on post-it notes, in table-group minutes or scribbled flipcharts, were gathered ‘to be answered at a later date’. When will that be?

To date, there has been no published information which addresses the unanswered event questions.

Transparency of Process, Policies and Approach

The care.data Programme Board has held meetings to plan the rollout process, policies and approach. The minutes and materials from which have not been published. I find this astonishing when one considers that the minutes of the care.data advisory group, NIB (new), CAG, GPES advisory or even NHS England Board itself are in the public domain. I believe the care.data Programme Board meeting materials should be too.

It was acknowledged through the Partridge Review of past use of our hospital records that this HES data is not anonymous. The extent of its sale to commercial third-parties and use by police and the Home Office was revealed. This is our medical data we gave to hospitals and in our wider medical use for our care. Why are we the last to hear it’s being accessed by all sorts of people who are not at all involved in our clinical care?

Even for commissioning purposes it is unclear how these datasharing reasons are justified when the Caldicott Review said extracting identifiable data for risk stratification or commissioning could not be assumed under some sort of ‘consent deal’?

“The Review Panel found that commissioners do not need dispensation from confidentiality, human rights and data protection law…” [The Information Governance review, ch7]

The 251 approval just got extended *again* – until 30th April 2015. If you can’t legally extract data without repeat approvals from on high, then maybe it’s time to question why?

The DoH, NHS England Patients and Information Directorate, HSCIC, and indeed many data recipients, all appear to have normalised an approach that for many is still a shock. The state centralised and passed on our medical records to others without our knowledge or permission. For years. With financial exchange. 

Amazingly, it continues to be released in this way today, still without our consent or fair processing or publicised way to opt out.

“To earn the public’s trust in future we must be able to show that our controls are meticulous, fool-proof and solid as a rock.”  said Sir Nick Partridge in his summary review.

Now you ask us to trust in care.data that the GP data, a degree more personal, will be used properly.

Yet you ask us to do this without significant changes in legislation to safeguard tightly defined purposes who can access it and why, how we control what future changes may be made without our knowledge and without a legally guaranteed opt out.

There is no information about what social care dataset is to be included in future, so how can we know what care.data scope even is yet?

Transparency cannot be a convenient watch word which applies with caveats. Quid pro quo, you want our data under an assumed consent process, then guarantee a genuinely informed public.

You can’t tell patients one approach now, then plan to change what will be said after the pilot is complete, knowingly planning a wider scope to include musculoskeletal or social care data and more.  Or knowing you plan to broaden users of data [like research and health intelligence currently under discussion at IAG ] but only communicate a smaller version in the pilot. That is like cheating on a diet. You can’t say and do one thing in public, then have your cake and eat it later when no one is looking. It still counts.

In these processes, policies and approach, I don’t feel my trust can be won back with lack of openness and transparency. I don’t yet see a system which is, ‘meticulous, fool-proof or solid as a rock’.

‘Pathfinder’ pilots

Most recently you have announced that four areas of CCGs will pilot the ‘pathfinder’ stage in the rollout of phase one. But where and when remains a  mystery. Pathfinder communications methods may vary from place to place and trial what works and what fails. One commendable method will be a written letter.

However even given that individual notice intent, we cannot ignore that many remaining questions will be hard to address in a leaflet or letter. They certainly won’t fit into an SMS text.

Why pilot communications at all which will leave the same open questions unanswered you already know, but have not answered?

For example, let’s get a few of the missing processes clarified up front:

  • How will you communicate with Gillick competent children, whose records may contain information about which their parents are not aware?
  • How will you manage this for elderly or vulnerable patients in care homes and with diminished awareness or responsibility?
  • What of  the vulnerable at risk of domestic abuse and coercion?
  • When things change in scope or use, how will we be given the choice to change our opt out decision?

I ask you not to ignore the processes which remain open. They need addressed BEFORE the pilot, unless you want people to opt out on the basis of their uncertainty and confusion.

What you do now, will set the model expectations for future communications. Patient online. Personalised medicine. If NHS health and social care is to become all about the individual, will you address all individuals equally or is reaching some less important than others?

It seems there is time and effort in talking to other professionals about big data, but not to us, whose data it is. Dear Patients & Information Directorate, you need to be talking to us, before to others about how to use us.

In March, this twelve point plan made some sensible suggestions.

Many of them remain unaddressed. You could start there. But in addition it must be clear before getting into communications tools, what is it that the pathfinders are actually piloting?

You can’t pilot communications without clearly defined contents to talk about.

Questions of substance need answers, the ten below to start with.

What determines that patients understand the programme and are genuinely informed, and how will it be measured?

Is it assumed that pilots will proceed to extraction? Or will the fair processing efforts be evaluated first and the effort vs cost be taken into account whether it is worth proceeding at all?

Given the cost involved, and legal data protection requirements, surely the latter? But the pathfinder action plan conflates the two.

Citizen engagement

Let’s see this as an opportunity to get care.data right, for us, the patients. After all, you and the rest of the NHS England Board were keen to tell us at the NHS AGM on September 18th, how valuable citizen engagement is, and to affirm that the NHS belongs to us all.

How valued is our engagement in reality, if it is ignored? How will involvement continue to be promoted in NHS Citizen and other platforms, if it is seen to be ineffective? How might this negatively affect future programmes and our willingness to get involved in clinical research if we don’t trust this basic programme today?

This is too important to get wrong. It confuses people and causes concern. It put trust and confidence in jeopardy. Not just for now, but for other future projects. care.data risks polluting across data borders, even to beyond health:

“The care.data story is a warning for us all. It is far better if the industry can be early on writing standards and protocols to protect privacy now rather than later on down the track,” he said. [David Willets, on 5G]

So please, don’t keep the feedback and this information to internal departments.

We are told it is vital to the future of our NHS. It’s our personal information.  And both belong to us.

During one Health Select Committee hearing, Mr. Kelsey claimed: “If 90 per cent opt out [of care.data], we won’t have an NHS.”

The BMA ARM voted in June for an opt in model.

ICO has ruled that an opt in model by default at practice level with due procedures for patient notification will satisfy both legal requirements and protect GPs in their role as custodians of confidentiality and data controllers. Patient Concern has called for GPs to follow that local choice opt in model.

I want to understand why he feels what the risk is, to the NHS and examine its evidence base. It’s our NHS and if it is going to fail without care.data and the Board let it come to this, then we must ask why. And we can together do something to fix it. There was a list of pre-conditions he stated at those meetings would be needed before any launch, which the public is yet to see met. Answering this question should be part of that.

It can’t afford to fail, but how do we measure at what cost?

I was one of many, including much more importantly the GPES Advisory Group, who flagged the shortcomings of the patient leaflet in October 2013, which failed to be a worthwhile communications process in January. I flagged it with comms teams, my MP, the DoH.

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

No one listened. No action was taken. It went ahead as planned. It cost public money, and more importantly, public trust.

In the words of Lord Darzi,

“With more adroit handling, this is a row that might have been avoided.”

Now there is still a chance to listen and to act. This programme can’t afford to pilot another mistake. I’m sure you know this, but it would appear that with the CCG announcement, the intent is to proceed to pilot soon.  Ready or not.

If the programme is so vital to the NHS future, then let’s stop and get it right. If it’s not going to get the participation levels needed, then is it worth the cost? What are the risks and benefits of pressing ahead or at what point do we call a halt? Would it be wise to focus first on improving the quality and correct procedures around the data you already have – before increasing the volume of data you think you need? Where is the added intelligence, in adding just more information?

Is there any due diligence, a cost benefit analysis for care.data?

Suggestions

Scrap the ‘soon’ timetable. But tell us how long you need.

The complete raw feedback from all these care.data events should be made public, to ensure all the questions and concerns are debated and answers found BEFORE any pilot.

The care.data programme board minutes papers and all the planning and due diligence should be published and open to scrutiny, as any other project spending public funds should be.

A public plan of how the pathfinders fit into the big picture and timeline of future changes and content would remove the lingering uncertainty of the public and GPs: what is going on and when will I be affected?

The NHS 5 year forward view was quite clear; our purse strings have been pulled tight. The NHS belongs to all of us. And so we should say, care.data  can’t proceed at any and at all costs. It needs to be ‘meticulous, fool-proof and solid as a rock’.

We’ve been patient patients. We should now expect the respect and response, that deserves.

Thank you for your consideration.

Yours sincerely.

 

Addendum: Sample of ten significant questions still outstanding

1. Scope: What is care.data? Scope content is shifting. and requests for scope purposes are changing already, from commissioning only to now include research and health intelligence. How will we patients know what we sign up to today, stays the purposes to which data may be used tomorrow?

2. Scope changes fair processing: We cannot sign up to one thing today, and find it has become something else entirely tomorrow without our knowledge. How will we be notified of any changes in what is to be extracted or change in how what has been extracted is to be used in future – a change notification plan?

3. Purposes clarity: Who will use which parts of our medical data for what? a: Clinical care vs secondary uses:

Given the widespread confusion – demonstrated on radio and in press after the pathfinders’ announcement – between care.data  which is for ‘secondary use’ only, i.e. purposes other than the direct care of the patient – and the Summary Care Record (SCR) for direct care in medical settings, how will uses be made very clear to patients and how it will affect our existing consent settings?

3. Purposes definition: Who will use which parts of our medical data for what?  b) Commercial use  It is claimed the Care Act will rule out “solely commercial”purposes, but how when what remains is a broad definition open to interpretation? Will “the promotion of health” still permit uses such as marketing? Will HSCIC give its own interpretation, it is after all, the fact it operates within the law which prescribes what it should promote and permit.

3. Purposes exclusion: Who will use which parts of our medical data for what?  c) Commercial re-use by third parties: When will the new contracts and agreements be in place? Drafts on the HSCIC website still appear to permit commercial re-use and make no mention of changes or revoking licenses for intermediaries.

4a. Opt out: It is said that patients who opt out will have this choice respected by the Health and Social Care Information Centre (i.e. no data will be extracted from their GP record) according to the Secretary of State for Health  [col 147] – but when will the opt out – currently no more than a spoken promise – be put on a statutory basis? There seem to be no plans whatsoever for this.

Further wider consents: how patients will know what they have opted into or out from is currently almost impossible. We have the Summary Care Record, Proactive care in some local areas, different clinical GP systems, the Electronic Prescription Service and soon to be Patient Online, all using different opt in methods of asking and maintaining data and consent, means patients are unsurprisingly confused.

4b. Opt out: At what point do you determine that levels of participation are worth the investment and of value? If parts of the population are not represented, how will it be taken into account and remain valuable to have some data? What will be statistically significant?

5. Legislation around security: The Care Act 2014 is supposed to bring in new legislation for our data protection. But there are no changes to date as far as I can see – what happened to the much discussed in Parliament, one strike and out. Is any change still planned? If so, how has this been finalised and with what wording, will it be open to Parliamentary scrutiny?  The Government claim to have added legal protection is meaningless until the new Care Act Regulations are put in front of Parliament and agreed.

6. What of the Governance changes discussed?

There was some additional governance and oversight promised, but to date no public communication of changes to the data management groups through the HRA CAG or DAAG and no sight of the patient involvement promised.

The Data Guardian role remains without the legal weight that the importance of its position should command. It has been said this will be granted ‘at the earliest opportunity.’ Many seem to have come and gone.

7. Data security: The planned secure data facility (‘safe setting’) at HSCIC to hold linked GP and hospital data is not yet built for expanded volume of data and users expected according to Ciaran Devane at the 6th September event. When will it be ready for the scale of care.data?

Systems and processes on this scale need security designed, that scales up to match in size with the data and its use.

Will you proceed with a pilot which uses a different facility and procedures from the future plan? Or worse still, with extracting data into a setting you know is less secure than it should be?

8. Future content sharing: Where will NHS patients’ individual-level data go in the longer term? The current documentation says ‘in wave 1’ or phase one, which would indicate a future change is left open, and indicated identifiable ‘red’ data is to be shared in future?  “care.data will provide the longer term visions as well as […] the replacement for SUS.”

9.  Current communications:

    • How will GPs and patients in ‘pathfinder’ practices be contacted?
    • Will every patient be written to directly with a consent form?
    • What will patients who opted out earlier this year be told if things have changed since then?
    • How will NHS England contact those who have retired or moved abroad recently or temporarily, still with active GP records?
    • How will foreign pupils’ parents be informed abroad and rights respected?
    • How does opt out work for sealed envelopes?
    • All the minorities with language needs or accessibility needs – how will you cater for foreign language, dialect or disability?
    • The homeless, the nomadic,  children-in-care
    • How can we separate these uses clearly from clinical care in the public’s mind to achieve a genuinely informed opinion?
    • How will genuine mistakes in records be deleted – wrong data on wrong record, especially if we only get Patient Online access second and then spot mistakes?
    • How long will data be retained for so that it is relevant and not excessive – Data Protection principle 3?
    • How will the communications cater for both GP records and HES plus other data collection and sharing?
    • If the plan is to have opt out effective for all secondary uses, communications must cater for new babies to give parents an informed choice from Day One. How and when will this begin?

No wonder you wanted first no opt out, then an assumed consent via opt out junk mail leaflet. This is hard stuff to do well. Harder still, how will you measure effectiveness of what you may have missed?

10. Pathfinder fixes: Since NHS England doesn’t know what will be effective communications tools, what principles will be followed to correct any failures in communications for any particular trial run and how will that be measured?

How will patients be asked if they heard about it and how will any survey, or follow up ensure the right segmentation does not miss measuring the hard to reach groups – precisely those who may have been missed?  i.e. If you only inform 10% of the population, then ask that same 10% if they heard of care.data, you would expect a close to 100% yes. That’s not reflective that the whole population was well informed about the programme.

If it is shown to have been ineffective, at what point do you say Fair Processing failed and you cannot legally proceed to extraction?

> This list doesn’t yet touch on the hundreds of questions generated from public events, on post-its and minutes. But it would be a start.

*******

References for remaining questions:

17th June Open House: Q&A

17th June Open House: Unanswered public Questions

Twelve point plan [March 2014] positive suggestions by Jeremy Taylor, National Voices

6th September care.data meeting in London

image quote: Winnie The Pooh, A.A. Milne

care.data, politics, privacy, surveillance, trust

Human Rights – real threats today vs theories of tomorrow

Theories on Thursday, furore on Friday. By Saturday the social media had hit the fan.

What we must remember whilst caught up in the recent Human Rights fuss, is that this is discussing a future theory. In practice, we are at risk of missing three* current and upcoming human rights threats, which are very real.

Whilst future policy change may already be doing harm to the spirit of the human rights law and those ideals today, current policies are having effect today in practice.

The Deregulation Bill, and other current policies and projects.

Regular readers will know, I have followed closely the care.data plans [see past posts] to extract our confidential GP medical records and centrally store, sell and share the information.

I hadn’t realised until recently why I care so strongly about doing this the right way. It simply felt wrong that the original plan was not to inform patients at all, and not ask for consent to remove the foundation stone of our confidentiality. The delayed plan, had a terrible junk-mail leaflet drop.

The current extraction plan is pending [roadmap end of page], but details unknown.

I have concerns about how it will harm the trust in the patient-GP relationship, potentially discriminate and segment certain groups and  I’m still unhappy how open the records will be for use by third parties, not for clinical care. There needs work done to make it done well, and to be transparent and trustworthy for patients.

But I’ve realised now, it feels wrong, simply because it impinges on one of our basic human rights. Our right to privacy.

This post is not about care.data per se, but the recent Bill of Rights debate made me take a closer look at the bigger picture.

There are many discussing this, far better informed on human rights than me. But perhaps it’s time the ordinary public pay more attention to our rights, and where they fit into our lives in the UK. Rights which are easily eroded if we don’t pay attention.

I’ve had a look at the current Bill proposal [my notes & comment at the end], but at least for now, I’m more concerned about the actual plans already underway, which will in  practice,  affect the application of our human rights today, and we may not know it.

There are at least three real changes in legislation right now which I believe should command our attention.

First, the Deregulation Bill.

This Bill will go to the Lords Committee stage on October 21st.

This is a real and present threat to human rights, as stated in the Joint Committee Report on Human Rights, June 14th 2014:

The Bill provides that a person exercising a regulatory function specified by the Minister:

 

The Government intends this economic growth duty to apply to the EHRC. We believe that applying this growth duty to the EHRC poses a significant risk to the EHRC’s independence, and therefore to its compliance with the Paris Principles and the Equal Treatment Directives as implemented by the Equality Act 2010. The Government is therefore risking the possibility of the EHRC’s accredited “A” status being downgraded and of putting the UK in breach of its obligations under EU equality law. Unless the continuing discussions between the Government and the Commission satisfy the Commission that the growth duty will not in any way impact upon its independence, we recommend that this duty not be applied to the EHRC.
Sections of the Deregulation Act currently passing through Parliament suggest the removal of any regulation that conflicts with the interests of a profit-maker. There are other domestic and regulatory bodies for which we should carefully consider this implication, not least from my perspective, in the NHS.

 

The Deregulation Bill creates a conflict when a law must consider commercial gain above human rights.

Further;

“The Bill would remove the power conferred on employment tribunals by the Equality Act to make wider recommendations in discrimination cases.”

 

The EHRC regards the power [conferred on employment tribunals] as useful, both for the employer to whom the recommendation is made and to the Commission itself for following up tribunal decisions, and it does not consider that sufficient evidence has been gathered to make out the case for abolition. We therefore recommend that the power of employment tribunals to make wider recommendations in discrimination cases should be retained.”

 

 

 

The Deregulation Bill also poses some concern for those interested in the requisition process for information, and press representation groups spoke out, worried it offers a back-door for seizing journalists’ material.

 

Seen all together, aspects of the Bill which is a mish-mash of all sorts of subjects, which was derided in some reports as being about knitting yarn, means it may well be a wolf in sheep’s clothing when it comes to human rights.

 

Second and Third, the recent changes in legislation & access

Other real threats to our universal human rights in the UK, I consider as points two and three, are already having an effect.

Recent legal changes to both a) the legal aid and b) the judicial review processes mean it is harder for many people to use the available processes due to cost.

(current consultation closing October 15th here and anyone can write to their MP for support, guidance at end of page.)

This results in inequality to use rights, which should be human rights for all by creating:

1. restrictions of individual access  (who can get a fair trial, the ability to appeal)

 

and

 

2. reducing the universality of application to human rights law (limiting the circumstances and reasons ‘the how and when’ under which rights may be applied)

 

 

These are the changes in progress right now. So what of the actual projects underway or recently effected?

 

Current threats in practice to our UK Human Rights

Mr. Grayling said this week that any future policy change will continue to ensure to promote the values of individual human dignity, equal treatment and fairness as the foundations of a democratic society. Many disagree.

The whole debate of this future policy change may already be doing real harm to the spirit of the law and those ideals today.

In my opinion, current actions are having real effect today in practice which risk undermining rather than strengthening our position towards universal human rights.

Current government policies and projects sign-post current thinking on the value of universal human rights and future direction.

Consider three things:

1. the recent changes which undermine access to use our rights, [access and universal applicability for all]
2. what value rights are given within current policies and practices,
3. the direction of travel in recent legislation, such as in surveillance, affecting universal rights for all.

It should come as no surprise then to hear of a more wholesale move towards the removal of rights in the proposal to repeal the Human Rights Act, and more. Steps have been taken on this path for some time.

A current sample of some areas with flaws in their approach to human rights include from my lay perspective:

If we in the ordinary public, in response to the proposals this week, are now concerned about about the theoretical threats to human rights by a potential future government, and care about getting it right, I’d suggest we:

don’t wait to worry about what might be in June next year. Encourage those who can, such as our MPs, to look at these real and practical human rights’ threats today. Support MPs & others who are.

Start the list, with the Deregulation Bill.  (Unless NHS England Patient & Information Directorate decide to begin care.data extractions before October 21st.) Watch this space.

************************
*there is clearly more of significance in this area, with which those better informed and active than me would say is missing, but with which I’ve not taken as close an interest. The Deregulation Bill will potentially affect NHS bodies, and I’ve looked at it before on care.data.

Notes on the proposals, and my references below:

************************

Reference sites:

The Deregulation Bill was introduced in the House of Commons on 23 January 2014. It received its Second Reading in the Commons on 4 February 2014, completed its Committee Stage on 25 March and began its Report Stage on 14 May. The Bill has been carried over to the next Session of Parliament. The Bill was preceded by a draft Deregulation Bill which was subject to pre-legislative scrutiny by the ad hoc Joint Committee on the Draft Deregulation Bill.

************************
For your reference and to their credit, I’ve found the following three websites useful and kept up to date with care.data information:

Dr. Bhatia, GP in Hampshire’s care.data info site

HSCIC care.data site

medConfidential – campaign for confidentiality and consent in health and social care – seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent

******************

On Legal Aid – consultation responses or write to your MP: http://www.lawsociety.org.uk/news/stories/moj-consultation-on-duty-crime-contracts-support-pack-for-member-responses/

******************

For reference – background Bil of Rights / scrapping the HRA

The theory

The outline future proposal this week suggested, “A majority Conservative Government will scrap Labour’s Human Rights Act, and will end the ability of the European Court of Human Rights to order changes to British laws.” [Jack of Kent, October 2nd]

Some of these plans were discussed here> on the Daily Politics. From 32.30 minutes in.

The plans have been met with widespread criticism in the press and by campaigners showing where the plans are flawed.

Myths abound how human rights are applied inappropriately to whom, and how they lack common sense.

In contrast, real examples have been presented of when the Human Rights Act and ECHR have been used to enhance and protect UK citizens, not least in the Mirror.

Looking to the future, individuals have further pointed out the fundamental flaw if limits of application were to be brought in which would for example, not use the law for ‘trivial cases’.

Tim Hancock, campaigns director of Amnesty UK, said in the International Business Times of this week’s announcement: “This is electioneering on the backs of Europe’s most vulnerable.

“Under these plans human rights would be reserved for only those people the Government decides should get them.”

Whilst we may each have our own political opinions, it is valuable to stay outside them and see changes objectively.

We must also see past the UKIP defection, knee-jerk reaction which conflates everything ‘Europe’, into something from which which the UK could ‘opt out’. As long as Britain remains a signatory to the ECHR, UK citizens could still directly petition the European Court of Human Rights in Strasburg to hear their case. In fact, could be more likely to, rather than go through the British courts first. These proposals conflate the 1951 Convention on Human Rights, the UK 1998 Human Rights Act and our rights under current European law, and more.

If next May, a Conservative majority were to be elected, this proposal might form a basis of proposed legislative changes.

It is highly unlikely to be as is, or without debate. It is a partisan approach which ignores the fact that cross parliamentary support would likely be needed, as was the case when Parliament voted in favour of the introduction of the UK Human Rights Act in 1998.

But that is an if, and thus far, actually moving towards this legislative change is theoretical.

 

 

#caredata, care.data, communications, confidentiality, NHS, NHSEngland, privacy, transparency, trust, women

care.data – the cut-outs: questions from minority voices

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]

My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

After taking part in the care.data advisory group public workshop 10.30-1pm on Saturday Sept 6th in London, I took advantage of a recent, generous gift; membership of the Tate. I went to ‘Matisse – the cut outs’ art exhibition.  Whilst looking around it was hard to switch off the questions from the morning, and it struck me that we still have so many voices not heard in the discussion of benefits, risk and background to the care.data programme. So many ‘cut out’ of any decision making.

Most impressive of the morning, had been the depth and granularity of questions which were asked.  I have heard varying aspects of questions at public events, and the subject can differ a little based on the variety of organisations involved. However, increasingly, there are not new questions, rather I hear deeper versions of the questions which have already been asked, over the last eighteen months. Questions which have been asked intensely in the last 6 months pause, since February 2014 [2] and which remain unanswered. Those from the care.data advisory committee and hosting the event, said the same thing based on a previous care.data advisory event also.

What stood out, were a number of minority group voices.

A representative for the group Friends, Families and Travellers (FFT) raised a number of excellent questions, including that of communications and ‘home’ GP practices for the Traveller community. How will they be informed about care.data and know where their ‘home’ practice is and how to contact them? Whose responsibility will that be?

I spoke with a small group a few weeks ago simply about NHS use in general. One said they feared being tracked down through a government system [which was used for anything other than clinical care]. They register with new names if they need to access A&E. That tells you already how much they trust ‘the system’. For the most part, he said, they would avoid NHS care unless they were really desperately in need and beyond the capability of their own traveller community ‘nurse’. The exception was childbirth when this group said they would encourage expectant mums to go into hospital for delivery. They must continue to do so when they need to and must feel safe to do so. Whether in general they may use primary care or not, many travellers are registered at GPs, and unless their names have been inadvertently cleansed recently, they should be contacted before any data extraction as much as anyone else.

Our NHS is constitutionally there for all. That includes groups who may be cut off from mainstream inclusion in society, through their actions, inaction or others’ prejudice. Is the reality in this national programm actively inclusive? Does it demonstrate an exemplary model in practice of what we hear said the NHS aims to promote?

Transgender and other issues

The question was posed on twitter to the event, whether trans issues would be addressed by care.data. The person suggested, that the data to be extracted would “out us as probably being trans people.” As a result,  she said “I’d want to see all trans ppl excluded from care.data.”

Someone who addressed ‘her complex gender identity’ through her art, was another artist I respect, Fiore de Henriquez. She was ‘shy of publicity.’ One of her former studios is filled with work based on two faces or symbiotic heads, aside from practice pieces for her more famous commissioned work.For her biography she insisted that nothing be concealed. “Put in everything you can find out about me, darling. I am proud to be hermaphrodite, I think I am very lucky, actually.” However, in her lifetime she acknowledged the need for a private retreat and was shy until old age, despite her flamboyant appearance and behaviour. You can see why the tweet suggested excluding any transgender data or people.

‘Transgender issues’ is an upcoming topic to be addressed at the NHS Citizen even on 18th September as well. How are we making sure these groups and the ‘other’ conditions, are not forgotten by care.data and other initiatives? Minorities included by design will be better catered for, and likely to participate if they are not simply tacked on as an afterthought, in tick-box participation

However, another aspect of risk is to be considered – missing minorities 

Any groups who opt themselves out completely, may find that they and their issues are under represented in decision making about them by commissioners and budget planning for example.  If authorities or researchers choose to base decisions only on care.data these discrepancies will need taken into account.

Ciarán Devane highlighted this two-sided coin of discrimination for some people. There are conditions which are excluded from care.data scope. For example HIV. It is included in HARS reporting, but not in care.data. Will the conditions which are excluded from data, be discriminated against somehow? Why are they included in one place, not in another, or where data is duplicated in different collections, where is it necessary, where is the benefit? How can you make sure the system is safe and transparent for minorities’ data to be included,  and not find their trust undermined by taking part in a system, in which they may have fears about being identified?

Missing voices

These are just two examples of groups from whom there had been little involvement or at least public questions asked, until now. The traveller and transgender community. But there are many, notably BME, and many many others not represented at any public meetings I have been at. If they have been well represented elsewhere, any raw feedback, with issues addressed, is yet to be shared publicly.

Missing voices – youth

A further voice from which we hear little at meetings, because these meetings have been attended as far as I have seen so far, mainly by older people, is the voice of our youth.

They are left out of the care.data discussion in my opinion, but should be directly involved. It is after all, for them that we need to think most how consent should work, as once in, our data is never deleted.

Whilst consent is in law overridden by the Health and Social Care Act, it is still the age old and accepted ethical best practice. If care.data is to be used in research in future, it must design best practices now, fit for their future purposes.

How will our under-18s future lives be affected by choices others make now on their behalf?

Both for them as the future society and as individuals. Decisions which will affect research, public health planning and delivering the NHS service provision as well as decisions which will affect the risk of individual discrimination or harm, or simply that others have knowledge about their health and lifestyle which they did not choose to share themselves.

Some people assume that due to social networks, young people don’t care about privacy. This is just not true. In fact, studies show that younger people are more conscious of the potential harm to their reputation, than we may want to give them credit for.

This Royal Academy of Engineering report, [3]” Privacy and Prejudice – Young People’s views on the Development of Electronic Patient Records” produced in conjunction with Wellcome from 2010, examines in some depth, youth opinions of 14-18 year olds.  It tackles questions on medical data use: consent, control and commercialism. The hairy questions are asked about teen access to records, so when does Gillick become applied in practice and who decides?

The summary is a collection of their central questions and its discussion towards the end, which are just as valid for care.data today, as well as for considering in the Patient Online discussion for direct care access. I hope you’ll take time to read it, it’s worth it.

And what about the Children?

Some of our most vulnerable, will have their data and records held at the HSCIC. There are plans for expansion rapidly into social care data management, aligned with the transformation of health and social services. Where’s the discussion of this? Does HSCIC even have the legal capacity to handle children’s social care data?

How will at-risk groups be safer using this system in which their identities are less protected? How will the information gathered be used intelligently in practice to make a difference and bring benefit? What safeguards are in place?

“Future releases of new functionality are planned over the next 12 months, including the introduction of the Child Protection – Information Sharing application which will help to improve the protection of children who have previously been identified as vulnerable by social services.” (ref: HSCIC Spine transition)

“Domestic violence can affect anyone, but women,
transgender people and people from BME groups are at higher risk than the general population.”
(Ref: Islington’s JSNA Executive Summary – 9 – August 2014)

 

We must ask these questions about data sharing and its protection on behalf of others, because these under represented groups and minorities cannot themselves, if they are not in the room.

Where’s the Benefit?

We should also be asking the question raised at the event, about the benefits compared with the data already shared today. “Where’s the benefit?”, asked another blogger some time ago, raising his concerns for those with disabilities. We should be asking this about new dating sharing vs the many existing research databases and registries we already have, with years of history. Ciarán Devane wisely asked this on the 6th, succinctly asking what attendees had expressed.

“It will be interesting to know if they can demonstrate benefits. Not just: ‘Can we technically do this?’ but: ‘If we see primary care data next to HES data, can we see something we didn’t see before’?”

An attendee at the Healthwatch run care.data event in Oxford last week, asked the same thing. NHS England and IT providers would, one would think, be falling over themselves to demonstrate the cost/benefit, to show why this care.data programme is well managed compared with past failures. There is form on having expensive top down programmes go awry at huge public expense and time and effort. On NpfIT “the NAO also noted that “…it was not demonstrated that the financial value of the benefits exceeds the cost of the Programme.”

Where is the benefits case for care.data, to weigh against the risks? I have yet to see a publicly available business case.

The public donation

Like my museum membership, the donation of our data will be a gift. It deserves to be treated with the respect that each individual should deserve if you were to meet them face-to-face in the park.

As I enjoyed early evening sun  leaving the exhibition, the grassy area outside was packed with people. There were families, friends, children, and adults on their own. A woman rested heavily pregnant, her bump against her partner. Children chased wasps and stamped on empty cans. One man came and sold me a copy of the Big Issue, I glimpsed a hearing aid tucked into a young woman’s beehive hair, one amputee, a child with Down Syndrome giggling with a sister. Those glimpses of people gave me images I could label without a second glance. Disabled. Deaf. Downs. There were potentially conditions I could not see in others. Cancer. Crohn’s. Chlamydia. Some were drinking wine, some smoking. A small group possibly high. I know nothing about any of those individuals. I knew no names, no addresses. Yet I could see some familial relationships. Some connections were obvious. It struck me, that they represented part of a care.data population, whom buyers and researchers  may perceive as only data. I hope that we remember them as people. People from whom this programme wants to extract knowledge of their lifestyles and lives, and who have rights to express if, and how they want to share that knowledge. How will that process work?

Pathfinders – the rollout challenges that remain?

At the advisory group led meeting it was confirmed that pathfinders, would be chosen shortly.

[CCGs were subsequently announced here,  see related links, end of page for detail, note added Oct 7th]

But  the care.data programme is “still delivering without a business case”.  Despite this, “between two and four clinical commissioning groups will be selected, “in the coming weeks” to begin the pathfinder stage of the care.data programme, ” reports NIB meeting[8]

It reports what was discussed at the meeting.

“The pathfinders will test different communication strategies before moving forward with the data extraction part of the project.”

I for one would be extremely  disappointed if pathfinders go ahead in the ‘as is’ mode.  It’s not communications which is the underlying issue still. It’s not communications that most people ask about. It’s questions of substance, to which, there appear to be still insufficient information to give sound answers.

Answers would acknowledge the trust in confidentiality owed to the individual men, women, and children whose data this is. The people represented by those in the park. Or by the fifty who gave up their time on a sunny Saturday to come and ask their questions. Many without pay or travel expenses just giving up their time. Bringing their questions in search of some answers.

The pathfinder communications cannot be meaningfully trialled to meet the needs of today and the future design, when the substance of key parts of the message is uncertain. Like scope.

The care.data advisory group and the Health and Social Care Information Centre , based on the open discussion at the workshop both appear to be working, “anticipating things to come…” and to be doing their best to put processes and change in place today, which will be “in step with the future.”

To what extent that is given the right tools, time and support to be successful with all of the public, including our minorities, I don’t know. It will depend largely now on the answers to all the open questions, which need to come from the Patients and Information Directorate at the Commissioning Board, NHS England.

After all, as Mr.Kelsey himself says,

“The NHS should be engaging, empowering and hearing patients and their carers throughout the whole system all the time. The goal is not for patients to be the passive recipients of increased engagement, but rather to achieve a pervasive culture that welcomes authentic patient participation.”

What could be less empowering than to dismiss patient rights?

The challenge is: how will the Directorate at NHS England ensure to meet all these technical, governance and security needs, and yet put the most important factors first in the design; confidentiality and the voice of the empowered patient: the voice of Consent?

*****

This post captured my thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.” This was about the people side of things. Part two, focuses on the system part of that.

*****

Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

*****

[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] https://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1

 

*****

More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

art, change, politics, privacy, sport, surveillance, Tech

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.

I should preface this by saying I know little about copyright and less about drones. But I’m thinking my lay thoughts, out loud.

In the first instance, if drones are used for creating something as in this story, 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 the future of 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.

copyright

 

Photography is changing. Increasingly technology is being used to take pictures. If photographic copyright depends 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 but I’d like to ask the questions I have. 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 and excluded. But my question is  how do you define computer-generated? At what point does copyright depend on autonomy or on arrangements by human-intervention?

Remember, in the US, 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)

“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 such as alpine skiing, canoeing, or extreme sports is only likely to increase by amateur, professional and commercial users. Stick a go-pro on the drone and it can get footage from places without the need for an accompanying person.

What questions might it raise for artists & creators today?

Specifically on art and copyright:  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?

If it has been legally defined, that there is no human copyright ownership for the product of the action by something non-human, where do you draw the line for human responsibility? Am I not responsible for the actions of anything non-human I own? If an animal I own, creates a road traffic accident, am I responsible for its actions? If so, then why not for artwork it creates? If there are differences, why are there differences, and where does the line of responsibility get defined and by whom?

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 definition of autonomy of action?”

I believe copyright, ownership, responsibility and non-human authorship is about more than this man vs macaque debate. Will we leave it at that and learn no more from this? If so, then the real monkey is definitely not the one in the picture.

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. [ added 29 Aug 2014 > also see BT case in CW investigation].

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? 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.

But these decisions do affect what is done in the name of our country and that does 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. They come down to its ethics, fairness & how this will shape the future.  As a mother, that is the responsibility I bear for my children.

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 occupations, and will it make a difference to the average citizen? 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 and privacy debate, rightly or wrongly. With associated risks and benefits, they have the potential to be of public service, entertainment and have uses which we have not yet seen.  How far off is the jedi training remote game? How far off is the security training remote, which is not a game? How is it to be governed?

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 the 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 of this ‘thinking’ technology in these everyday places must be considered today, because tomorrow you may 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?

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 laid out 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. It goes beyond authorship.

Who decides what is creative input and intervention vs automatic or autonomous action? 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 that 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 may 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 copyright, of ownership and autonomy of action?

If so, photographs being shot, without a legally responsible owner, is the least of my worries.

****

[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.

 

 

#caredata, care.data, change management, commercial, engagement, genomics, health, HES, leadership, NHSEngland, politics, privacy, research, trust

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.

Where the boundary lies between participation for clinical care and for research is less clear in the media presentation. If indeed participants’ results will be fed back into their NHS care pathway,  then both aims seem to be the intent of the current wave of participants.

It remains therefore perhaps unclear, how this new offering interacts with the existing NHS genetic services for direct clinical care, or the other research projects such as the UK Biobank for example, particularly when aims appear to overlap:.

“The ultimate aim is to make genomic testing a routine part of clinical practice – but only if patients and clinicians want it.” [Genomics England, how we work]

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 at Genomics England 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?  At Genomics England events it has been stated that the infrastructure will then be embedded in the NHS. How is unclear, if commercial funding has been used to establish it. But at its most basic, 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 in the desired numbers?

What research has been done to demonstrate the need or want for this new WGS project going forwards at scale, compared with a) present direct care or b) existing research facilities?

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 in vast numbers in our aging population to exploit the resulting knowledge for their personal benefit vs companies who seek commercial profit? How will the commercial and charity investors, make it worth their while? Is the cost/benefit to society 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 another possibility to consider: would the Government 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?

What are the questions which are not being asked of this huge state investment, particularly at a time when we are told he NHS is in such financial dire straits?

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. We should know what is spends. Ultimately, it is we who pay for it.

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.

Perhaps more importantly, the unrestrained media hype carries the very real risk of creating unfounded hope for an immediate diagnosis or treatment, for vulnerable individuals and families who in reality will see no personal benefit. This is not to undermine what may be possible in future. It is simply a plea to rein in hype to reality.

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 measurable substance. Without a clear cost-benefit analysis, I admit, I am skeptical. I would like to see more information in the public domain.

Has the documentation of the balance of patient/public good and  expected “major contribution to make to wealth creation and economic growth in this country” been examined?

Is society prepared for this?

I question whether the propositions of the initiative have been grasped by Parliament and society as a whole, although I understand this is not a ‘new’ subject as such. This execution however, does appear at least, massive in its practical implications, not least for GPs if it is to become so mainstream, as quickly as plans predict. 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.]

Questions, in search of an 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 next step in policy and huge public spend were signed off and where is the periodic check against progress and public sign off, of the next step? 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, being shared with patients and public: as discussed at the stakeholder meeting at St.Barts London, 3rd October 2013 (a key panel presentation: 45 minute video with slides)? 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 expectations of increased use of 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.  At the July 3rd 2014 Board Meeting, in the discussion of the genomics programme I understood the discussion as starting to address 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 free-to-all NHS as we know it. And IF it is so, through planned policy. More people paying for their own care under ‘personalisation;  is in line with ISCG expectations set out  earlier in 2014: “there will be increasing numbers of people funding their own care and caring for others.”

Not everyone may have understood it that way, but if not, I’d like to know what was meant.

I would like to understand what is meant when Genomics England spokespeople  say the future holds:

“Increasingly to select most appropriate treatment strategy. In the longer term, potential shift to prevention based on risk-based information.”
or
“Review the role of sequencing in antenatal and adult screening.”

I would welcome the opportunity to fully understand what was suggested at that Board meeting as a result of our shared risk pool, and readers should view it and make up their own mind. Even better, a frank public and/or press board meeting with Q&A could be rewarding.

The ethical questions that are thrown up by this seem yet to have little public media attention.

Not least, incidental findings: if by sequencing someone’s DNA, you establish there is something for their health that they ought to be doing soon, will you go to that patient and say look, you should be doing this…. these are incidental findings, and may be quite unexpected and separate from the original illness under investigation in say, a family member, and may also only suggest risk indicators, not clear facts.

If this is expected to be mainstream by 2018, what training plans are in place as indicated needed as a “requirement for professionals across the NHS to be trained in genetics and its implications”? [presentation by Mark Bale, DoH, July 2014]

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

Because there is so much people like me don’t know, but should, if this is our future NHS under such fundamental change as is hyped.

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.

Because patients of rare disease in search of clinical care answers should be entitled to have expectations set appropriately, and participants in research know to what they, and possibly family members indirectly, are committed.

Because if 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 shape our attitudes towards our disabled and those who are sick, or vulnerable or elderly? 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?

As we become the first country in the world to permit so called ‘three parent children’ how far will we go down the path of ‘fixing’ pre-natal genetic changes, here or in PGD?

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? In a state where genetics could be considered as part of education planning? [16]

For those with lifelong conditions, how may genetic screening affect their life insurance when the Moratorium expires*  in 2017 (*any shift in date TBC pending discussion) ? How will it affect their health care, if the NHS England Board sees a potential effect on equity of access? How will it affect those of us who choose not to have screening – will we be penalised for that?

And whilst risk factors may include genomic factors, lifestyle factors some argue are even more important, but these change over time. How would those, who may have had past genetic screening be affected in future requirements?

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…”

Managing change

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 may 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 not clearly discussing the potential effects of risk stratification and personalisation on a free at the point of delivery health service is in my opinion, not transparent, and requires more public discussion.

After all, there are patients who are desperate for answers, who are part of the NHS and need our fair treatment and equity of access for rare disease. There is the majority who may not have those needs but knows someone who does. And we all fund and support the structure and staff in our world class service, we know and love. We want this to work well.

Future research participation depends on current experience and expectations. It is the latter I fear are being currently mishandled in public and the media.

Less than a month ago, at the NHS England Board Meeting on July 3rd,  Lord Adebowale 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? Or do the leading organisations possibly paternalistically believe the public is too dim or uninterested or simply working to make ends meet to care [perhaps part of the 42% of the population who expected to struggle as a result of universal welfare changes,  one in three main claimants (34 per cent) said in 2012 they ‘run out of money before the end of the week/month always or most of the time’] ? 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 up close. 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 https://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

[16] Education committee, December 4th 2013 including Prof. Plomin From 11.09:30 education and social planning  http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14379

*****

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]

 

*****

#caredata, care.data, HES, HSCIC, leadership, privacy, research, scope, transparency, trust

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   ****

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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.

#caredata, care.data, confidentiality, genomics, HES, HSCIC, leadership, NHSEngland, politics, privacy, Tech, transparency, trust

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 potentially poised to be outsourced through Steria [3] or any other organi Continue reading care.data should be like playing Chopin – or will it be all the right notes, but in the wrong order? [Part two] →

privacy, words

That’s the power of artists’ privacy.

“That’s the power of artists’ privacy. It preserves the melodies otherwise drowned out by words, stories, information.”

Joshua Rothman – in The New Yorker

This article in The New Yorker on July 9th 2014, is a keeper. So I just had to keep a post linked here for posterity. He begins:

“These days, when we use the word “privacy,” it usually has a political meaning. We’re concerned with other people and how they might affect us. We think about how they could use information about us for their own ends, or interfere with decisions that are rightfully ours. We’re mindful of the lines that divide public life from private life. We have what you might call a citizen’s sense of privacy.

That’s an important way to think about privacy, obviously. But there are other ways. ”  Read on here >> just, perfect.

Virginia Woolf, 25th January 1882 – 28th March 1941

“To be silent; to be alone. All the being and the doing, expansive, glittering, vocal, evaporated; and one shrunk, with a sense of solemnity, to being oneself…”