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

They say ‘every little helps’.

In my new role on the ADRN panel, I read submissions for research requests and comment if I pick up ethical concerns that may be reflected in wider public opinion.

The driving force for sharing administrative data research is non-commercial, with benefits to be gained for the public good.

So how do we quantify the public good, and in the public interest?

Is there alignment between the ideology of government, the drivers of policy [for health, such as the commissioning body NHS England] and the citizens of the country on what constitutes ‘the public good’?

There is public good to be gained for example, from social and health data seen as a knowledge base,  by using it using in ‘bona fide’ research, often through linking with other data to broaden insights.

Insight that might result in improving medicines, health applications, and services. Social benefits that should help improve lives, to benefit society.

Although social benefits may be less tangible, they are no harder for the public to grasp than the economic. And often a no brainer as long as confidentiality and personal control are not disregarded.

When it comes to money making from our data the public is less happy. The economic value of data raises more questions on use.

There is economic benefit to extract from data as a knowledge base to inform decision making, being cost efficient and investing wisely. Saving money.

And there is measurable economic public good in terms of income tax from individuals and corporations who by using the data make a profit, using data as a basis from which to create tools or other knowledge. Making money for the public good through indirect sales.

Then there is economic benefit from data trading as a commodity. Direct sales.

In all of these considerations, how does what the public feels and their range of opinions, get taken into account in the public good cost and benefit accounting?

Do we have a consistent and developed understanding of ‘the public interest’ and how it is shifting to fit public expectation and use?

Public concern

“The importance of building and maintaining trust and confidence among all stakeholder groups concerned – including researchers, institutions, ethical review boards and research participants – as a basis for effective data sharing cannot be overstated.”  [Wellcome blog, April 2015]

If something is jeopardising that public good it is in the public interest to say so.  Protecting both are not mutually exclusive, but how are they defined in law, by expectation and good practice?

The loss of public trust in data sharing is a threat to data used in the public interest, so what are we doing to fix it and are lessons being learned?

The three biggest concerns voiced by the public at care.data listening events[1] were repeatedly about commercial companies’ use, and re-use of data, third parties accessing data for unknown purposes and the resultant loss of confidentiality.

 Question from Leicester: “Are we saying there will be only clinical use of the data – no marketing, no insurance, no profit making? This is our data.” [NHS Open Day, June 2014]

While people are happy for the state to use their data without active consent for bona fide research, they are not for commercial purposes.

Much of the debate and upset caused by the revelations of how our hospital episode statistics were managed in the past centred on the sense of loss of ownership. And with that, the inability to consent to who uses it. This despite acknowledgment that patients own their data.

Significant concern centres on use of the information gleaned from data that patients consider commercial exploitation. For use segmenting the insurance markets. For consumer market research. Using data for individual targeting. And its utter lack of governance.

There is also concern about data being directly sold or exchanged as a commodity.

These concerns were raised meeting after meeting in the 2014 care.data “listening process.”

To read in Private Eye that commercially sensitive projects were discussed in various meetings between NHS England and supermarket giant Tesco throughout 2014 [2] by the Patients and Information Director, responsible for care.data, is therefore all the more surprising.

They may of course be quite unrelated.

But when transparency is the mother of trust, it’s perhaps a surprising liason while ‘listening’ to care.data concerns.

It could appear that greater confidentiality was given to the sensitivity of commercial meetings than citizens’ sensitive data.

Consent package deals may be a costly mistake

People are much more aware since care.data a year ago, that unknown third parties may access data without our consent.

Consent around secondary NHS data sharing and in wider fora is no longer an inconvenient ethical dilemma best left on the shelf, as it has been for the last 25 years in secondary use, dusted off in the care.data crisis. [3]

Consent is front and centre in the latest EU data protection discussions [4] in which consent may become a requirement for all research purposes.

How that may affect social science and health research use, its pros and cons [5] remain to be seen.

However, in principle consent has always been required and good practice in applied medicine, despite the caveat for data used in medical research. As a general rule: “An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it”. But this is consent for your care. Assuming that information is shared when looking after you, for direct care, during medical treatment itself is not causes concerns.

The idea is becoming increasingly assumed in discussions I have heard, [at CCG and other public meetings] that because patients have given implied consent to sharing their information for their care, that the same data may be shared for other purposes. It is not, and it is those secondary purposes that the public has asked at care.data events, to see split up, and differentiated.

Research uses are secondary uses, and those purposes cannot ethically be assumed. However, legal gateways, access to that data which makes it possible to uses for clearly defined secondary purposes by law, may make that data sharing legal.

That legal assumption, for the majority of people polls and dialogue show [though not for everyone 6b], comes  a degree of automatic support for bona fide research in the public interest. But it’s not a blanket for all secondary uses by any means, and it is this blanket assumption which has damaged trust.

So if data use in research assumes consent, and any panel is the proxy for personal decision making, the panel must consider the public voice and public interest in its decision making.

So what does the public want?

In those cases where there is no practicable alternative [to consent], there is still pressure to respect patient privacy and to meet reasonable expectations regarding use. The stated ambition of the CAG, for example, is to only advise disclosure in those circumstances where there is reason to think patients would agree it to be reasonable.

Whether active not implied consent does or does not become a requirement for research purposes without differentiation between kinds, the public already has different expectations and trust around different users.

The biggest challenge for championing the benefits of research in the public good, may be to avoid being lumped in with commercial marketing research for private profit.

The latter’s misuse of data is an underlying cause of the mistrust now around data sharing [6]. It’s been a high price to pay for public health research and others delayed since the Partridge audit.

Consent package deals mean that the public cannot choose how data are used in what kids of research and if not happy with one kind, may refuse permission for the other.

By denying any differentiation between direct, indirect, economic and social vale derived from data uses, the public may choose to deny all researchers access to their all personal data.

That may be costly to the public good, for public health and in broader research.

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

A state which allows profit for private companies to harm the perception of  good practice by research in the public interest has lost its principles and priorities. And lost sight of the public interest.

Understanding if the public, the research community and government have differing views on what role economic value plays in the public good matters.

It matters when we discuss how we should best protect and approach it moving towards a changing EU legal framework.

“If the law relating to health research is to be better harmonised through the passing of a Regulation (rather than the existing Directive 95/46/EC), then we need a much better developed understanding of ‘the public interest’ than is currently offered by law.”  [M Taylor, “Information Governance as a Force for Good? Lessons to be Learnt from Care.data”, (2014) 11:1 SCRIPTed 1]

In the words of Dr Mark Taylor, “we need to do this better.”

How? I took a look at some of this in more detail:

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

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

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image via Tesco media

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

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

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

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

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

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

[6b] The ‘Dialogue on Data’ Ipsos MORI research 2014 https://www.ipsos-mori.com/researchpublications/publications/1652/Dialogue-on-Data.aspx – commissioned by the Economic and Social Research Council (ESRC) and the Office for National Statistics (ONS) to conduct a public dialogue examining the public’s views on using linked administrative data for research purposes,

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

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

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

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

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

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

 

The Economic Value of Data vs the Public Good? [2] Pay-for-privacy, defining purposes

Differentiation. Telling customers apart and grouping them by similarities is what commercial data managers want.

It enables them to target customers with advertising and sales promotion most effectively. They segment the market into chunks and treat one group differently from another.

They use market research data, our loyalty card data, to get that detailed information about customers, and decide how to target each group for what purposes.

As the EU states debate how research data should be used and how individuals should be both enabled and protected through it, they might consider separating research purposes by type.

While people are happy for the state to use their data without active consent for bona fide research, they are not for commercial consumer research purposes. [ref part 1].

Separating consumer and commercial market research from the definition of research purposes for the public good by the state, could be key to rebuilding people’s trust in government data use.

Having separate purposes would permit separate consent and control procedures to govern them.

But what role will profit make in the state’s definition of ‘in the public interest’ – is it in the public interest if the UK plc makes money from its citizens? and how far along any gauge of public feeling will a government be prepared to go to push making money for the UK plc at our own personal cost?

Pay-for-privacy?

In January this year, the Executive Vice President at Dunnhumby, Nishat Mehta, wrote in this article [7], about how he sees the future of data sharing between consumers and commercial traders:

“Imagine a world where data and services that are currently free had a price tag. You could choose to use Google or Facebook freely if you allowed them to monetize your expressed data through third-party advertisers […]. Alternatively, you could choose to pay a fair price for these services, but use of the data would be forbidden or limited to internal purposes.”

He too, talked about health data. Specifically about its value when accurate expressed and consensual:

“As consumers create and own even more data from health and fitness wearables, connected devices and offline social interactions, market dynamics would set the fair price that would compel customers to share that data. The data is more accurate, and therefore valuable, because it is expressed, rather than inferred, unable to be collected any other way and comes with clear permission from the user for its use.”

What his pay-for-privacy model appears to have forgotten, is that this future consensual sharing is based on the understanding that privacy has a monetary value. And that depends on understanding the status quo.

It is based on the individual realising that there is money made from their personal data by third parties today, and that there is a choice.

The extent of this commercial sharing and re-selling will be a surprise to most loyalty card holders.

“For years, market research firms and retailers have used loyalty cards to offer money back schemes or discounts in return for customer data.”

However despite being signed up for years, I believe most in the public are unaware of the implied deal. It may be in the small print. But everyone knows that few read it, in the rush to sign up to save money.

Most shoppers believe the supermarket is buying our loyalty. We return to spend more cash because of the points. Points mean prizes, petrol coupons, or pounds off.

We don’t realise our personal identity and habits are being invisibly analysed to the nth degree and sold by supermarkets as part of those sweet deals.

But is pay-for-privacy discriminatory? By creating the freedom to choose privacy as a pay-for option, it excludes those who cannot afford it.

Privacy should be seen as a human right, not as a pay-only privilege.

Today we use free services online but our data is used behind the scenes to target sales and ads often with no choice and without our awareness.

Today we can choose to opt in to loyalty schemes and trade our personal data for points and with it we accept marketing emails, and flyers through the door, and unwanted calls in our private time.

The free option is to never sign up at all, but by doing so customers pay a premium by not getting the vouchers and discounts.  Or trading convenience of online shopping.

There is a personal cost in all three cases, albeit in a rather opaque trade off.

 

Does the consumer really benefit in any of these scenarios or does the commercial company get a better deal?

In the sustainable future, only a consensual system based on understanding and trust will work well. That’s assuming by well, we mean organisations wish to prevent PR disasters and practical disruption as resulted for example to NHS data in the last year, through care.data.

For some people the personal cost to the infringement of privacy by commercial firms is great. Others care less. But once informed, there is a choice on offer even today to pay for privacy from commercial business, whether one pays the price by paying a premium for goods if not signed up for loyalty schemes or paying with our privacy.

In future we may see a more direct pay-for-privacy offering along  the lines of Nishat Mehta.

And if so, citizens will be asking ever more about how their data is used in all sorts of places beyond the supermarket.

So how can the state profit from the economic value of our data but not exploit citizens?

‘Every little bit of data’ may help consumer marketing companies.  Gaining it or using it in ways which are unethical and knowingly continue bad practices won’t win back consumers and citizens’ trust.

And whether it is a commercial consumer company or the state, people feel exploited when their information is used to make money without their knowledge and for purposes with which they disagree.

Consumer commercial use and use in bona fide research are separate in the average citizen’s mind and understood in theory.

Achieving differentiation in practice in the definition of research purposes could be key to rebuilding consumers’ trust.

And that would be valid for all their data, not only what data protection labels as ‘personal’. For the average citizen, all data about them is personal.

Separating in practice how consumer businesses are using data about customers to the benefit of company profits, how the benefits are shared on an individual basis in terms of a trade in our privacy, and how bona fide public research benefits us all, would be beneficial to win continued access to our data.

Citizens need and want to be offered paths to see how our data are used in ways which are transparent and easy to access.

Cutting away purposes which appear exploitative from purposes in the public interest could benefit commerce, industry and science.

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

That will create more opportunity for data to be used in the public interest, which will increase the public good; both economic and social which the government hopes to see expand.

And that could mean a happy ending for everyone.

The Economic Value of Data vs the Public Good?  They need not be mutually exclusive. But if one exploits the other, it has the potential to continue be corrosive. The UK plc cannot continue to assume its subjects are willing creators and repositories of information to be used for making money. [ref 1] To do so has lost trust in all uses, not only those in which citizens felt exploited.[6]

The economic value of data used in science and health, whether to individual app creators, big business or the commissioning state in planning and purchasing is clear. Perhaps not quantified or often discussed in the public domain perhaps, but it clearly exists.

Those uses can co-exist with good practices to help people understand what they are signed up to.

By defining ‘research purposes’, by making how data are used transparent, and by giving real choice in practice to consent to differentiated data for secondary uses, both commercial and state will secure their long term access to data.

Privacy, consent and separation of purposes will be wise investments for its growth across commercial and state sectors.

Let’s hope they are part of the coming ‘long-term economic plan’.

****

Related to this:

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

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

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

****

image via Tesco media

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

Personalisation: the economic value of data for companies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Demonstrating The Actual Economic Value of Data”

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

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

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

With consent.

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

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

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

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

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

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

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

Commercial market research or real research for the public good?

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

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

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

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

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

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

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

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

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

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

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

This dialogue needs to be continued.

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

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

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

As they say, every little helps.

****

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

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

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

****

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

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

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

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

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

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

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

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

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

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

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

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

Sophie Scholl – post election protest, the press and public

Had she not been executed in Munich aged 21, Sophie Scholl would have celebrated her 94th birthday today.

Had she been alive, I would like to have invited her for the German tradition of afternoon coffee and cake in an artisan cafe in the student quarter of Schwabing, in the north side of central Munich. One we both once knew well and liked. One opposite a bookshop.

She famously wrote in a letter: ’Send me more new books, I’m dying of hunger!’

We might have talked of Heine’s poetry that she loved and was banned. Of Hemingway or Mann. When she was at school there was a long list of books removed which weren’t by Nazi approved authors.

I’m sure she would have approved of the literary prize – won by Glen Greenwald in 2014 – named after Sophie and her brother.

We may have strolled past the space where the Wittelsbach Palace in the Brienner Strasse once stood, Munich’s former Gestapo headquarters, where she was questioned for four days in 1943. It was torn down in 1964. She didn’t live to see that happen.

She was convicted of high treason and executed on February 22 after being caught distributing homemade anti-war and anti-Hitler leaflets at the University of Munich (LMU), with her brother Hans.

She was a courageous, bright young woman who stood up for peace, criticised the Nazi leader and government, and died for her ideals, embodied in the group the ‘White Rose’.

The media then was controlled and wrote little of what protest there was.

Some media outlets today in the UK and America have been criticised for their poor coverage of recent peaceful protests. But set fire to a police van or deface a monument and your cause might make the front page. Albeit for all the wrong reasons.

It is time for journalists to reconsider their role and responsibilities. In a world of change which may include losing the right to free speech and equality for women and minorities in the Human Rights Act, it seems odd editors of all people, would choose to be so biased.

The White Rose group called for students to fight against the party. The Nazi party. To leave the party organizations in which they saw students politically muzzled and protest contained.

Post UK General Election 2015 I wonder if there are people who are doubting their own political involvement with parties who lost seats.

Some may be joining political groups or marching under campaign groups’ banners. What will they achieve?

Post Election Protests

Of the two thirds who did not vote for the winning GE2015 party, how many people turned out in protests today?

There was more of a widespread rally reported on the stock market than on the streets since Friday morning.

“Centrica, the owner of British Gas and one of the UK’s main energy providers rose 7.4 per cent to 276.5p. Royal Bank of Scotland was one of the best-performing financial stocks, up 6 per cent at 352p.”  [FT May 9, 2015]

This week after the election, parties and large member campaign groups may be thinking hard about their messages and their audience.  If their message on the NHS for example, has hundreds of concrete case studies of moves towards outsourcing under the last five years of government, and millions of online signatures, yet they cannot convince the voting public that the state NHS as we know it is at risk, something is wrong with the message, their delivery or finding the audience they need to engage.

What matters to the majority of people everyday is more palpable than policies or protest campaigns; shelter, water, food, power, transport, our digital infrastructure and freedom of communication and travel. The protection of human dignity. To feel safe.  To have access to justice and education and health. To have freedom to love and live as you choose.

There is also another possibility. That not enough people care enough to stand up with the courage of their convictions. But perhaps it is rather that the majority are just too busy managing daily life?

Perhaps there is also an argument for campaign groups with millions of members to stop national protest and start delivery of grassroots local change. To provide the services and solutions that strengthen individuals. Their big campaigns did not turn into great electoral power.  Perhaps like twitter, there is a tendency for the message to only reach already like minded folk. Small concrete changes for individuals may have more impact on everyday lives. Through those could come cohesion. And instead of telling their already convinced supporters to sign yet another petition, they should share stories, with consent, of everyday lives.

Stories of what real life is like when you are affected by policies in practice, stories whose ripples will reach further. Show, don’t tell. Don’t tell us the NHS is in danger, show us the service rationing.

The Access to Work cuts consultation affecting the disabled has already been announced, picked up by twitter and in the Independent.

But how effective any ensuing protests may be, may depend on the press and wider public for enough support.

The Press and the Public

In the 2015 General Election campaign, many felt the biggest winner was spin.

There was the Telegraph’s last minute email to readers, and a letter so misleading reportedly from business owners that even big name companies distanced themselves from it.

Now after the result and seeing the first cuts to the disabled and threats to free speech, I really think the Telegraph editor(s) should go and sit in a corner and think about what they have done.

When on Friday I spoke with an experienced investigative journalist, his reaction to the election result was disappointment the campaign had been so bland on content yet strongly partisan.

For people who blame Scots for the outcome of the election, the political press did its job. Not only have cuts in compassionate welfare been successfully justified by blaming the demand for it on laziness, employment market failures have been left squarely at the feet of foreigners, and the press front pages managed to drive a wedge between the nations and parties.

‘Divide and conquer’ is an ancient but perhaps forgotton meme. Pushing living issues we struggle with in society back into our own hands so that we criticised each other and not the failings of parties’ policies to deal with them, was an effective tactic.

The created fear of anything foreign became not just about mugs, not just about people crossing the channel, but fear of the unknown.

So we voted for what we knew or against what we could no longer trust.

So what would Sophie have been like today?

She would no doubt find the injustice of our recent changes in the legal system abhorrent.

Solicitors tell me of rumors that people on probation in Sussex are no longer being met face-to-face since the service was privatised. She may also have had fears that an increase in juvenile behaviour legislation as was implemented in her youth in Germany, will come into Britain. Powers to search pupils, issue same day detention, exclusions & use reasonable force began in 2010. What will be next for our young people under the same leader now in charge of directly punitive services? A fan of long custodial sentences.

She would perhaps have been pretty sharp on twitter. She may have supported Millifandom. She would have stood up to the press. She would have become a pretty indomitable woman. Exactly what the judge, state and its supporters saw in her at 21.

I will not be able to indulge Sophie on her 94th birthday, as she lies buried in a tiny grave, in the Perlach cemetery on the south side of Munich next to the Stadelheim prison where she spent her final days.

It is still one of the largest prison complexes in Germany today.

She reminds us that well used peaceful protest, and print, can prick the conscience of citizens and those in power to achieve justice, fairness and a future society open to all who want to live in it.

“We will not be quiet. We are your bad conscience. The White Rose will not leave you in peace.”[Flugblatt 4]

The world is better for Sophie Scholl and friends having been there. She would have been 94 today. It wasn’t long ago she was 21.

Herzlichen Glückwunsch Sophie, meine Liebe.

*****

*****

The White Rose background:

In 1943 open protest was impossible.

Their sixth and final leaflet produced by the movement was titled: “To fellow freedom fighters in the resistance”.

Its last lines are quite hard to translate: “Frisch auf mein Volk, die Flammenzeichen rauchen!” But the spirit is this. “Wake up people, where there is smoke there is fire.”

Would the White Rose flyers have fanned the sparks of protest in Munich had she not been killed?

The state wasn’t prepared to find out.

She was convicted of high treason on February 22 after being caught distributing homemade anti-war and anti-Hitler leaflets at the University of Munich (LMU) four days earlier, with her brother Hans.

The judge, Freisler, who became later known for his ideology of the  ‘pernicious juvenile’ which helped shape Nazi law, condemned six people to death from the group the ‘White Rose': all three defendants of the first trial of February 22, 1943: Hans and Sophie Scholl and Christoph Probst; as well as Alexander Schmorell, Willi Graf and Professor Kurt Huber in the second trial on April 19, 1943.

Sophie Scholl believed she could change things. In life or death.

“It is such a splendid sunny day, and I have to go. But how many have to die on the battlefield in these days, how many young, promising lives? What does my death matter if by our acts thousands are warned and alerted? Among the student body there will certainly be a revolt.”

She was given a written copy of the charges against her. In her cell she wrote one word on the back of the page. “Freedom.”

But she did not get the student revolt or the freedom she hoped for.

Of about 8,000 Munich students a maximum of 50 ever stood up for them. Neither the leaflets left in the university or the White Rose deaths sparked great protest against the Nazi regime.

The ‘seditious’ leaflet promoted peace and pointed out how many young men were losing their lives on the Russian front.  It decried gagging laws and limits to freedom of expression. It called for people, in particular students, to be individual conscious citizens with responsibility to freedom, and honour for their future.

Fatally, it also said that Hitler’s regime must fall to ensure the survival of Germany: “Hitler und seine Regime müssen fallen, damit Deutschland weiterlebt.”

 

References:
The White Rose papers: 1, 2, 3, 4, 5, 6.

http://www.bpb.de/geschichte/nationalsozialismus/weisse-rose/61035/zeitzeugin

Spiegel: http://www.spiegel.de/einestages/widerstandskaempferin-sophie-scholl-jetzt-werde-ich-etwas-tun-a-948731.html

Michael C. Schneider/ Winfried Süß: “Keine Volksgenossen. Studentischer Widerstand der Weißen Rose”LMU Müchen 1993 ISBN 3-922480-08-X

Barbara Leisner: ‘Ich würde es genauso wieder machen’. Sophie Scholl, ISBN: 3-612-65059-9

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

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

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

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

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

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

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

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

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

Does the public have transparency of who manages our data?

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

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

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

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

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

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

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

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

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

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

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

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

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

Could there be privatisation plans afoot for HSCIC?

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

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

hscic_DH_framework

 

 

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

Should there not be the same onus to inform the public whose data it is? Especially with “protection of patients being paramount”.

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

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

****

Refs:

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

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

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

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

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

Refusing refugees – a modern genocide?

I am embarrassed that our government will not accept more asylum seekers into the UK.

From the comfort of my warm dry living room that is easy, while I watch the hardship and efforts of others as cold, drowned people are pulled from the Med.

Easy but for the fact that I see each one as somebody’s daughter or somebody’s son. I am also sad and angered by our collective UK government response, because we could do better.

It’s “genocide — nothing less than genocide, really,” Maltese Prime Minister Muscat told CNN this week.

Seventy two years ago, the  1943 British Cabinet debated what to do with wartime refugees, mainly Jews and Czechs. At the time they did not recognise genocide in progress. Their conversations appear not to have recognised any humanitarian crisis, as much as a political inconvenience.

Just like today, the 1943 politicians discussed the problem of what to do with ‘refugees’.  It was a problem for them, the British cabinet.

They discussed how it would look and what anti-semitism / racism may occur at home. What language to use. And how difficult it was to rally international support. Which departments would take the criticism and how to pretend that political discussions were taking place that weren’t. Other meetings were to be held in secret.

They seem  little concerned how to solve the problems of people whose lives they would forever alter and many more  indirectly besides.

They seem more concerned to ensure that the refugees will get sent back.

They made decisions on Palestine which would have far reaching consequences into the future.

Today’s British politicians and media tend towards using migrant rather than refugee, and often conflate the terms immigrant, refugee and asylum seekers. Usually centred on a problem real or imagined that immigration poses in the UK.

I wish we could start talking about solving the problems of these ‘people’ instead.

Politicians blame each other for lack of action. Blame the traffickers for unseaworthy boats and exploitation. Blame helps no one.

Part of the solution lies in not creating the problems to start with.
Afghanistan, Libya, Palestine. Syria. Yemen. The list is long. We fund fighting and mis-directed or managed humanitarian and cultural aid.

Yet we could not find funds for the humanitarian needs of children and adults who needed our help until voters saw enough coffins on the evening news, a political embarrassment which forced action.

Camps will be built for internment on arrival – but is that a way to solve the problems of people who have fled their homes?

Nations will also unite in yet another new war. A war on traffickers.

The well organised merchants in manslaughter expect to lose their vessels to the waves or have them confiscated. Most of these open caskets are navigated by a non-culpable refugee and the traffickers don’t care if they founder.

Let them drown has not been a policy exclusive to European leaders.

What effective difference will destroying more boats make?

This is a refugee’s only option in the last leg of a long journey from war; torture, rape and harassment. How will it stop them leaving or wanting a safe and better life for their children? Why should it? Will this policy not simply push up the price of every place on a remaining boat and drive more unworthy ones into service?

Will sending arrivals back solve anything or create some sort of game of Risk in which they can ‘play again’ until they die trying? How will they be treated if they refuse to go?

The failure of governments to listen and the resulting deaths, is indefensible when organisations and individuals predicted and publicised the effect of withdrawing search and rescue months ago.

I wondered in the interim how big the number had to become to be embarrassing. Turns out it was 900. And that’s not the total, but the one incident on one night.

The only good thing to have come from that night is some return to rescue work. But the decision to take no asylum seekers is wrong.

The right to seek asylum is set out in the Universal Declaration on Human Rights. It is one of the most important obligations in international law.

People in the UK care about the callous ‘let them drown’ policy affecting would-be asylum seekers and refugees. We see through hyped-up threats of  ‘immigration’ voiced by right-wing minorities or pandered to in party mugs.  Sadly the pandering has become passivity towards the real needs of real people. It is shaping a political discourse the majority in the UK do not want, with real consequences at home and abroad.

The fear of loss  of political face is costing lives in the Mediterranean. It is making British politicians of all colours too quiet. The 7th May may see the inconvenient batten handed over to a new government.

How many will perish in the mean time?

One child drowned is one child too many. How long will our leaders focus on what they perceive as protecting our own interests and borders, and not on the people who need our help?

These people have no future if they don’t leave. They have no future if they don’t arrive alive. And no future if not welcomed when they do.

I will never forget that ten o’clock news picture of a dead  boy being carried onto the craggy Greek shore. I can imagine his mother putting that patterned warm hat on his head in the hope it would protect him from the cold weather on a rough crossing.

I see his lifeless hands hanging free in the fisherman’s arms.
Just short of safety. Just dead.

And I wonder how today’s Cabinet Office minutes will read in the years to come.

photo: twitter adapted from a poster of the Italian Red Cross. #WhereisEurope

****

1943 Cabinet Office minutes.

February. Refugees.

A.E. Rpt. on recent mtg. re Jews. No progress with U.S.A. No immed. chance of direct conversns. Can we continue to pretend in H/C. tht. we are holding internat. conversns. We here can do so little tht. difficult for us to take it up internationally unless U.S. co-operate.

H.O. I cd. take 1.000 or so as part of U. Nations move – but only to bring the others on. Rathbone & Co. all pressing us to admit some to encourage other A. Nations. My feeling is we’ve done too much already w’out guarantee tht. other Nations will help. Danger of anti-Semitic troubles here.

S/Doms. Advantages of explaing. diffies. in Debate – what we have done, and diffy. of doing more.

W.O. Risk of provoking discussion of Jewish Army.

A.E. Agree advantages. Trouble is disclosure of U.S. delay.

H.O. Arrange Parly. Ques. to P.M. askg. what contribn. we and Empire have made – and give it publicity.

M/L. Can Cab. Sec draft Answer to show what we have done.

Agreed: Have Ques. subject to Cab. seeing answer. Otherwise, stand firm. Have put to U.S. Chargé d’Affaires last week-end 3 points a) mtg. here. b) Agreed – await replies to these points. Ch. Whips to be asked to discourage undue interest.

****

Reception and Accommodation of Refugees.

A.E. Shd. we take line “done all poss. nil more” or “This is for U. Nations. We will try more, if others do their share”.

We favour second course. This is apart fr. what C.O. can do in Pal. for women and children. (Limited nos. give priority to w. and children)

Amendment of para 4 of telegram – agreed.

****

March 1943 Refugees.

L.P.S. Debate in H/Lds. Tomorrow. Can I use some of these figures?

P.M. Yes: don’t use ‘em all.

H.O. M/I. to seek publicity for this statement. Law. “Czecho-slovak nationals” vice Czechs”

M.A.P. Cd. a total be put in: small gobbets don’t give impn of large total.

K.W. Only if the total is really impressive.

P.M. Consider this point.

****

April 1943

A.E. U.S. have asked if we cd. take few hundred Stateless refugees. ? Say we’ll take a few more if U.S. will take a few.

*****

Refugees: Bermuda Conference. May 1943

A.E. Neutral countries to take more. Camp in N. Africa to relieve immed. pressure on Spain. Revival of inter-Govt. Cttee. These are the 3 main points. Encouraging tht. we & U.S. delegates (not all easy) got on v. well together.

G.Hall. a) Diffy of U.S. doing anything: for 2 days: then they came along v. nicely

L.P.S. Anti-Semitic letters: put it on basis of all refugees, not Jewish refugees – i.e. by describing them by nationality not race.

L.S.A. P.5. India has taken 11.000 not 5.000. para. 14. 185 W.O. Para. 15. Arabs have already got the farms. We have now asked them to put up camps H.O. Minor corrections – notify to applic. Authy. for record?

A.E. Debate. Peake to open qua Conference. Senior Minister to wind up (? Member of War Cabinet)

L.P. Giving assurance to neutrals tht. they won’t have to keep them indefinitely. Does this mean they will go back whence they came?

H.O. This is the understanding. Our only undertaking is to see tht. they get back.

****

July 1943

P.M. I’m committed to creation of a Jewish National Home in Palestine. Let us go on with that […]

S/Doms. Don’t dissent. But what I want is to face up to formulation of a proper post-war policy.

P.M. Not a good time for statements on long-term policy.

Chinese whispers, modern weapons #fiction

When you play the party game as children, what starts off said into the ear of one player, becomes something quite unintelligible by the time it reaches full circle.

It can cause chaos and it’s quite fun. Unless it ends up something hurtful the hosts would rather hadn’t been shared.

Not so fun, is the potential for the chaos caused by technology with the capability to spread information from one place to another, sufficiently damaging to bring business to a standstill. Or security. Or utilities. Or our medical devices.

In my spare time, I write fiction. [I have a long work-in-progress set against stories of post World War II emigration.] Here’s some flash fiction from today.

###

December 2015 in London.

After an apathetic  run up to the election, when few concrete policies emerged with detail that could be pinned down publicly and become humiliating in case of coalition concessions, the election was decided. A weak power sharing was agreed. Conservative and right wingers, with the dash of yellow that had survived.

Admitting another poor win, the party have ousted Cameron, and elected a new leadership. Boris and Nigel have already had a few laughs and a few run-ins.

On her way home, twenty-eight year old Kate grabs a copy of the Evening Express with their garish grins on the front cover. Again.

Barely 100 days into a winter government, May is long gone. Little of substance has changed save some minor screwing down on the rights to welfare access for foreigners or those ‘fit-to-work’.  Legacy policies remain.

One of those was on cybersecurity;  technology that protects online communications, banking, shopping, health data and more.

Kate reads the page 3 article:

“In a knee jerk reaction to recent violent attacks, the cyber security ban first proposed in the last parliament has been rushed through.

Campaigners claim the MPs understand so little of what they are legislating that they “believe it would be possible to stop terrorists communicating privately without astonishing collateral damage to Britain’s economy, freedom, and security.”

Businesses and government bodies that have security affected under the new laws, consider what to do.

Kate working in her finance IT admin job, spent the day running reports on what software and historical data she needs in the system. Some sort of internal review.

Banking has IT still in place from the seventies. Building anything from the ground up is hard work. Patches are added on for as long as they’ll work. They’ll get round to fixing it. Soon.

Curled up on the sofa  she uses her single log-on for government agencies, for identity, administration and payments. Finally submits her passport renewal and thinks about visiting her cousin in San Francisco in February.

She books the bargain deal seen in an ad on Facebook that suited exactly what she wanted.

Her cousin joked ‘please bring wine’, theirs has run out. His last post mentioned the price of bottled water.  And China extracting it from the sea. Crazy.

Kate decides to catch up with that BBC Radio 4 IT podcast she missed. “There’s a good bit on banking,” her colleague Dan had said,  “and bring-your-own-device at airports.”  He was cute, and she was interested. Earphones, PJs and slippers on.

She worries shes turning into her mother.

Finishing her popcorn, Kate’s half way up before remembers she need do nothing. She isn’t yet used to the clinic’s networked library system administering her insulin dose. [Something else she’d inherited.]

Medical devices have expanded exponentially. Thousands of people have insulin pumps or heart monitors installed, running citizens on invisible software. The transport system for data, the life blood for humans and high-tech.

Kate’s delighted to get independence from appointments.  Her consultant delighted to cut running costs. Teleheath permits datasharing . Algorithms flag warning reports for abnormal statistics.

The individual products are pre-integrated and powered by central backbone systems. The clinic has an overview of everyone it manages remotely.

Kate’s numbers are usually fine, and ignored with a normal label, somewhere in the system.  But they have started to show she needs a greater dose. She’ll get a call in the morning to discuss a change in her meds, to be adjusted remotely.

Thirsty, she gets up and fills her glass from the tap. That reminds her. She should check her bill online.

Utilities across the UK, power and water, many owned by one Chinese conglomerate, have replaced old mainframe customer billing systems with these integrated modern software. Behind the scenes too, its distribution has interoperable compliance permitted by deregulation and required for globalisation.

Checking her alarm before she puts out the light, Kate smiles at the perfect step count for the day. Her fitapp makes her think of Dan.

She dreams of him. Somehow he’s landed with her in San Francisco. They won’t let him through immigration as he doesn’t want to give up his work laptop. Or phone. The flight can’t take off again and every staff member is using their own device to try and control airspace which is filled with pac man eating the planes.

While she travels in her sleep in the small hours, an organisation in a country she’s never been to, starts sending massive amounts of data into systems around the world. Some with bugs.

Overloaded, her hospital system shuts down, spewing out warning reports including Kate’s into the nighttime corridor. It doesn’t report exactly how her own device is affected because they haven’t researched it. 

Still tired, she gets up and hears the radio news in drips through the shower.

“A military coup in China, thousands of private business owners rounded up.”

“Concern is growing after what appears to be a mass cyber attack spreading malware to banks…”

She wonders if hers is affected.  It’s going to snow says the forecaster just as the water stops. And the lights and radio cut off.

Kate curses the landlord, towelling soap suds from her hair. She picks up her phone but can’t call out as there’s no network – either down or just as after 7/7 perhaps it’s overloaded.

She swears again.

She hopes no one is trying to call her.

It looks like today is going to be very inconvenient.

In the tube queue Kate starts contemplating a duvet day, she’s squashed in an impatient mass of people. Ticket machines are down and it’s bedlam. She picks up a paper from the stand.

Water cannon are back on the front page.  The story is about the role of government, state security and how to keep control.

The headline asks:

“Is London’s newest weapon out of date?”

****

 

“Alongside the Great Firewall, China has been developing a new way to intercept and redirect internet traffic, according to a new report from Citizen Lab.” [The Verge, April 2015]

When the intelligence services knows states have infiltrated commercial company systems, and governments have these tools, how will they be used for good, and who defines those purposes?

How do citizens of all nations make sure that our commercial businesses, our everyday life support systems & legislation are well designed?

Do MPs in government understand what it should and can control and is it investing in the right tools to do so? Are our MPs sufficiently skilled for the requirements in the realm of cyber security and digital rights?

Has water potential to be the next weapon of mass destruction?

[image: Telegraph]

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

 

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

Simon Stevens, had just said in his keynote speech:

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

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

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

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

“It is essentially, their data.”

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

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

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

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

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

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

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

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

The NHS England Privacy Assessment said: ‘The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service.’

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

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

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

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

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

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

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

Looking back or forward thinking?

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

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

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

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

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

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

Patients right to choose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What about their practical applications and management?

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

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

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

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

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

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

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

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

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

“Over the coming decade”  has already started.

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

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

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

Will more people be able to participate in remote trials?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where to start?

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

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

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

The second, was on consent.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Thinking to some purpose