Tag Archives: datasharing

The perfect storm: three bills that will destroy student data privacy in England

Lords have voiced criticism and concern at plans for ‘free market’ universities, that will prioritise competition over collaboration and private interests over social good. But while both Houses have identified the institutional effects, they are yet to discuss the effects on the individuals of a bill in which “too much power is concentrated in the centre”.

The Higher Education and Research Bill sucks in personal data to the centre, as well as power. It creates an authoritarian panopticon of the people within the higher education and further education systems. Section 1, parts 72-74 creates risks but offers no safeguards.

Applicants and students’ personal data is being shifted into a  top-down management model, at the same time as the horizontal safeguards for its distribution are to be scrapped.

Through deregulation and the building of a centralised framework, these bills will weaken the purposes for which personal data are collected, and weaken existing requirements on consent to which the data may be used at national level. Without amendments, every student who enters this system will find their personal data used at the discretion of any future Secretary of State for Education without safeguards or oversight, and forever. Goodbye privacy.

Part of the data extraction plans are for use in public interest research in safe settings with published purpose, governance, and benefit. These are well intentioned and this year’s intake of students will have had to accept that use as part of the service in the privacy policy.

But in addition and separately, the Bill will permit data to be used at the discretion of the Secretary of State, which waters down and removes nuances of consent for what data may or may not be used today when applicants sign up to UCAS.

Applicants today are told in the privacy policy they can consent separately to sharing their data with the Student Loans company for example. This Bill will remove that right when it permits all Applicant data to be used by the State.

This removal of today’s consent process denies all students their rights to decide who may use their personal data beyond the purposes for which they permit its sharing.

And it explicitly overrides the express wishes registered by the 28,000 applicants, 66% of respondents to a 2015 UCAS survey, who said as an example, that they should be asked before any data was provided to third parties for student loan applications (or even that their data should never be provided for this).

Not only can the future purposes be changed without limitation,  by definition, when combined with other legislation, namely the Digital Economy Bill that is in the Lords at the same time right now, this shift will pass personal data together with DWP and in connection with HMRC data expressly to the Student Loans Company.

In just this one example, the Higher Education and Research Bill is being used as a man in the middle. But it will enable all data for broad purposes, and if those expand in future, we’ll never know.

This change, far from making more data available to public interest research, shifts the balance of power between state and citizen and undermines the very fabric of its source of knowledge; the creation and collection of personal data.

Further, a number of amendments have been proposed in the Lords to clause 9 (the transparency duty) which raise more detailed privacy issues for all prospective students, concerns UCAS share.

Why this lack of privacy by design is damaging

This shift takes away our control, and gives it to the State at the very time when ‘take back control’ is in vogue. These bills are building a foundation for a data Brexit.

If the public does not trust who will use it and why or are told that when they provide data they must waive any rights to its future control, they will withhold or fake data. 8% of applicants even said it would put them off applying through UCAS at all.

And without future limitation, what might be imposed is unknown.

This shortsightedness will ultimately cause damage to data integrity and the damage won’t come in education data from the Higher Education Bill alone. The Higher Education and Research Bill is just one of three bills sweeping through Parliament right now which build a cumulative anti-privacy storm together, in what is labelled overtly as data sharing legislation or is hidden in tucked away clauses.

The Technical and Further Education Bill – Part 3

In addition to entirely new Applicant datasets moving from UCAS to the DfE in clauses 73 and 74 of the  Higher Education and Research Bill,  Apprentice and FE student data already under the Secretary of State for Education will see potentially broader use under changed purposes of Part 3 of the Technical and Further Education Bill.

Unlike the Higher Education and Research Bill, it may not fundamentally changing how the State gathers information on further education, but it has the potential to do so on use.

The change is a generalisation of purposes. Currently, subsection 1 of section 54 refers to “purposes of the exercise of any of the functions of the Secretary of State under Part 4 of the Apprenticeships, Skills, Children and Learning Act 2009”.

Therefore, the government argues, “it would not hold good in circumstances where certain further education functions were transferred from the Secretary of State to some combined authorities in England, which is due to happen in 2018.”<

This is why clause 38 will amend that wording to “purposes connected with further education”.

Whatever the details of the reason, the purposes are broader.

Again, combined with the Digital Economy Bill’s open ended purposes, it means the Secretary of State could agree to pass these data on to every other government department, a range of public bodies, and some private organisations.

The TFE BIll is at Report stage in the House of Commons on January 9, 2017.

What could go possibly go wrong?

These loose purposes, without future restrictions, definitions of third parties it could be given to or why, or clear need to consult the public or parliament on future scope changes, is a  repeat of similar legislative changes which have resulted in poor data practices using school pupil data in England age 2-19 since 2000.

Policy makers should consider whether the intent of these three bills is to give out identifiable, individual level, confidential data of young people under 18, for commercial use without their consent? Or to journalists and charities access? Should it mean unfettered access by government departments and agencies such as police and Home Office Removals Casework teams without any transparent register of access, any oversight, or accountability?

These are today’s uses by third-parties of school children’s individual, identifiable and sensitive data from the National Pupil Database.

Uses of data not as statistics, but named individuals for interventions in individual lives.

If the Home Secretaries past and present have put international students at the centre of plans to cut migration to the tens of thousands and government refuses to take student numbers out of migration figures, despite them being seen as irrelevant in the substance of the numbers debate, this should be deeply worrying.

Will the MOU between the DfE and the Home Office Removals Casework team be a model for access to all student data held at the Department for Education, even all areas of public administrative data?

Hoping that the data transfers to the Home Office won’t result in the deportation of thousands we would not predict today, may be naive.

Under the new open wording, the Secretary of State for Education might even  decide to sell the nation’s entire Technical and Further Education student data to Trump University for the purposes of their ‘research’ to target marketing at UK students or institutions that may be potential US post-grad applicants. The Secretary of State will have the data simply because she “may require [it] for purposes connected with further education.”

And to think US buyers or others would not be interested is too late.

In 2015 Stanford University made a request of the National Pupil Database for both academic staff and students’ data. It was rejected. We know this only from the third party release register. Without any duty to publish requests, approved users or purposes of data release, where is the oversight for use of these other datasets?

If these are not the intended purposes of these three bills, if there should be any limitation on purposes of use and future scope change, then safeguards and oversight need built into the face of the bills to ensure data privacy is protected and avoid repeating the same again.

Hoping that the decision is always going to be, ‘they wouldn’t approve a request like that’ is not enough to protect millions of students privacy.

The three bills are a perfect privacy storm

As other Europeans seek to strengthen the fundamental rights of their citizens to take back control of their personal data under the GDPR coming into force in May 2018, the UK government is pre-emptively undermining ours in these three bills.

Young people, and data dependent institutions, are asking for solutions to show what personal data is held where, and used by whom, for what purposes. That buys in the benefit message that builds trust showing what you said you’d do with my data, is what you did with my data. [1] [2]

Reality is that in post-truth politics it seems anything goes, on both sides of the Pond. So how will we trust what our data is used for?

2015-16 advice from the cross party Science and Technology Committee suggested data privacy is unsatisfactory, “to be left unaddressed by Government and without a clear public-policy position set out“.  We hear the need for data privacy debated about use of consumer data, social media, and on using age verification. It’s necessary to secure the public trust needed for long term public benefit and for economic value derived from data to be achieved.

But the British government seems intent on shortsighted legislation which does entirely the opposite for its own use: in the Higher Education Bill, the Technical and Further Education Bill and in the Digital Economy Bill.

These bills share what Baroness Chakrabarti said of the Higher Education Bill in its Lords second reading on the 6th December, “quite an achievement for a policy to combine both unnecessary authoritarianism with dangerous degrees of deregulation.”

Unchecked these Bills create the conditions needed for catastrophic failure of public trust. They shift ever more personal data away from personal control, into the centralised control of the Secretary of State for unclear purposes and use by undefined third parties. They jeopardise the collection and integrity of public administrative data.

To future-proof the immediate integrity of student personal data collection and use, the DfE reputation, and public and professional trust in DfE political leadership, action must be taken on safeguards and oversight, and should consider:

  • Transparency register: a public record of access, purposes, and benefits to be achieved from use
  • Subject Access Requests: Providing the public ways to access copies of their own data
  • Consent procedures should be strengthened for collection and cannot say one thing, and do another
  • Ability to withdraw consent from secondary purposes should be built in by design, looking to GDPR from 2018
  • Clarification of the legislative purpose of intended current use by the Secretary of State and its boundaries shoud be clear
  • Future purpose and scope change limitations should require consultation – data collected today must not used quite differently tomorrow without scrutiny and ability to opt out (i.e. population wide registries of religion, ethnicity, disability)
  • Review or sunset clause

If the legislation in these three bills pass without amendment, the potential damage to privacy will be lasting.


[1] http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2016-07-15/42942/  Parliamentary written question 42942 on the collection of pupil nationality data in the school census starting in September 2016:   “what limitations will be placed by her Department on disclosure of such information to (a) other government departments?”

Schools Minister Nick Gibb responded on July 25th 2016: ”

“These new data items will provide valuable statistical information on the characteristics of these groups of children […] “The data will be collected solely for internal Departmental use for the analytical, statistical and research purposes described above. There are currently no plans to share the data with other government Departments”

[2] December 15, publication of MOU between the Home Office  Casework Removals Team and the DfE, reveals “the previous agreement “did state that DfE would provide nationality information to the Home Office”, but that this was changed “following discussions” between the two departments.” http://schoolsweek.co.uk/dfe-had-agreement-to-share-pupil-nationality-data-with-home-office/ 

The agreement was changed on 7th October 2016 to not pass nationality data over. It makes no mention of not using the data within the DfE for the same purposes.

Datasharing, lawmaking and ethics: power, practice and public policy

“Lawmaking is the Wire, not Schoolhouse Rock. It’s about blood and war and power, not evidence and argument and policy.”

"We can't trust the regulators," they say. "We need to be able to investigate the data for ourselves." Technology seems to provide the perfect solution. Just put it all online - people can go through the data while trusting no one.  There's just one problem. If you can't trust the regulators, what makes you think you can trust the data?" 

Extracts from The Boy Who Could Change the World: The Writings of Aaron Swartz. Chapter: ‘When is Technology Useful? ‘ June 2009.

The question keeps getting asked, is the concept of ethics obsolete in Big Data?

I’ve come to some conclusions why ‘Big Data’ use keeps pushing the boundaries of what many people find acceptable, and yet the people doing the research, the regulators and lawmakers often express surprise at negative reactions. Some even express disdain for public opinion, dismissing it as ignorant, not ‘understanding the benefits’, yet to be convinced. I’ve decided why I think what is considered ‘ethical’ in data science does not meet public expectation.

It’s not about people.

Researchers using large datasets, often have a foundation in data science, applied computing, maths, and don’t see data as people. It’s only data. Creating patterns, correlations, and analysis of individual level data are not seen as research involving human subjects.

This is embodied in the nth number of research ethics reviews I have read in the last year in which the question is asked, does the research involve people? The answer given is invariably ‘no’.

And these data analysts using, let’s say health data, are not working in a subject that is founded on any ethical principle, contrasting with the medical world the data come from.

The public feels differently about the information that is about them, and may be known, only to them or select professionals. The values that we as the public attach to our data  and expectations of its handling may reflect the expectation we have of handling of us as people who are connected to it. We see our data as all about us.

The values that are therefore put on data, and on how it can and should be used, can be at odds with one another, the public perception is not reciprocated by the researchers. This may be especially true if researchers are using data which has been de-identified, although it may not be anonymous.

New legislation on the horizon, the Better Use of Data in Government,  intends to fill the [loop]hole between what was legal to share in the past and what some want to exploit today, and emphasises a gap in the uses of data by public interest, academic researchers, and uses by government actors. The first incorporate by-and-large privacy and anonymisation techniques by design, versus the second designed for applied use of identifiable data.

Government departments and public bodies want to identify and track people who are somehow misaligned with the values of the system; either through fraud, debt, Troubled Families, or owing Student Loans. All highly sensitive subjects. But their ethical data science framework will not treat them as individuals, but only as data subjects. Or as groups who share certain characteristics.

The system again intrinsically fails to see these uses of data as being about individuals, but sees them as categories of people – “fraud” “debt” “Troubled families.” It is designed to profile people.

Services that weren’t built for people, but for government processes, result in datasets used in research, that aren’t well designed for research. So we now see attempts to shoehorn historical practices into data use  by modern data science practitioners, with policy that is shortsighted.

We can’t afford for these things to be so off axis, if civil service thinking is exploring “potential game-changers such as virtual reality for citizens in the autism spectrum, biometrics to reduce fraud, and data science and machine-learning to automate decisions.”

In an organisation such as DWP this must be really well designed since “the scale at which we operate is unprecedented: with 800 locations and 85,000  colleagues, we’re larger than most retail operations.”

The power to affect individual lives through poor technology is vast and some impacts seem to be being badly ignored. The ‘‘real time earnings’ database improved accuracy of benefit payments was widely agreed to have been harmful to some individuals through the Universal Credit scheme, with delayed payments meaning families at foodbanks, and contributing to worse.

“We believe execution is the major job of every business leader,” perhaps not the best wording in on DWP data uses.

What accountability will be built-by design?

I’ve been thinking recently about drawing a social ecological model of personal data empowerment or control. Thinking about visualisation of wants, gaps and consent models, to show rather than tell policy makers where these gaps exist in public perception and expectations, policy and practice. If anyone knows of one on data, please shout. I think it might be helpful.

But the data *is* all about people

Regardless whether they are in front of you or numbers on a screen, big or small datasets using data about real lives are data about people. And that triggers a need to treat the data with an ethical approach as you would people involved face-to-face.

Researchers need to stop treating data about people as meaningless data because that’s not how people think about their own data being used. Not only that, but if the whole point of your big data research is to have impact, your data outcomes, will change lives.

Tosh, I know some say. But, I have argued, the reason being is that the applications of the data science/ research/ policy findings / impact of immigration in education review / [insert purposes of the data user’s choosing] are designed to have impact on people. Often the people about whom the research is done without their knowledge or consent. And while most people say that is OK, where it’s public interest research, the possibilities are outstripping what the public has expressed as acceptable, and few seem to care.

Evidence from public engagement and ethics all say, hidden pigeon-holing, profiling, is unacceptable. Data Protection law has special requirements for it, on autonomous decisions. ‘Profiling’ is now clearly defined under article 4 of the GDPR as ” any form of automated processing of personal data consisting of using those data to evaluate certain personal aspects relating to a natural person, in particular to analyse or predict aspects concerning that natural person’s performance at work, economic situation, health, personal preferences, interests, reliability, behaviour, location or movements.”

Using big datasets for research that ‘isn’t interested in individuals’ may still intend to create results profiling groups for applied policing, or discriminate, to make knowledge available by location. The data may have been deidentified, but in application becomes no longer anonymous.

Big Data research that results in profiling groups with the intent for applied health policy impacts for good, may by the very point of research, with the intent of improving a particular ethnic minority access to services, for example.

Then look at the voting process changes in North Carolina and see how that same data, the same research knowledge might be applied to exclude, to restrict rights, and to disempower.

Is it possible to have ethical oversight that can protect good data use and protect people’s rights if they conflict with the policy purposes?

The “clear legal basis”is not enough for public trust

Data use can be legal and can still be unethical, harmful and shortsighted in many ways, for both the impacts on research – in terms of withholding data and falsifying data and avoiding the system to avoid giving in data – and the lives it will touch.

What education has to learn from health is whether it will permit the uses by ‘others’ outside education to jeopardise the collection of school data intended in the best interests of children, not the system. In England it must start to analyse what is needed vs wanted. What is necessary and proportionate and justifies maintaining named data indefinitely, exposed to changing scope.

In health, the most recent Caldicott review suggests scope change by design – that is a red line for many: “For that reason the Review recommends that, in due course, the opt-out should not apply to all flows of information into the HSCIC. This requires careful consideration with the primary care community.”

The community spoke out already, and strongly in Spring and Summer 2014 that there must be an absolute right to confidentiality to protect patients’ trust in the system. Scope that ‘sounds’ like it might sneakily change in future, will be a death knell to public interest research, because repeated trust erosion will be fatal.

Laws change to allow scope change without informing people whose data are being used for different purposes

Regulators must be seen to be trusted, if the data they regulate is to be trustworthy. Laws and regulators that plan scope for the future watering down of public protection, water down public trust from today. Unethical policy and practice, will not be saved by pseudo-data-science ethics.

Will those decisions in private political rooms be worth the public cost to research, to policy, and to the lives it will ultimately affect?

What happens when the ethical black holes in policy, lawmaking and practice collide?

At the last UK HealthCamp towards the end of the day, when we discussed the hard things, the topic inevitably moved swiftly to consent, to building big databases, public perception, and why anyone would think there is potential for abuse, when clearly the intended use is good.

The answer came back from one of the participants, “OK now it’s the time to say. Because, Nazis.” Meaning, let’s learn from history.

Given the state of UK politics, Go Home van policies, restaurant raids, the possibility of Trump getting access to UK sensitive data of all sorts from across the Atlantic, given recent policy effects on the rights of the disabled and others, I wonder if we would hear the gentle laughter in the room in answer to the same question today.

With what is reported as Whitehall’s digital leadership sharp change today, the future of digital in government services and policy and lawmaking does indeed seem to be more “about blood and war and power,” than “evidence and argument and policy“.

The concept of ethics in datasharing using public data in the UK is far from becoming obsolete. It has yet to begin.

We have ethical black holes in big data research, in big data policy, and big data practices in England. The conflicts between public interest research and government uses of population wide datasets, how the public perceive the use of our data and how they are used, gaps and tensions in policy and practice are there.

We are simply waiting for the Big Bang. Whether it will be creative, or destructive we are yet to feel.

*****

image credit: LIGO – graphical visualisation of black holes on the discovery of gravitational waves

References:

Report: Caldicott review – National Data Guardian for Health and Care Review of Data Security, Consent and Opt-Outs 2016

Report: The OneWay Mirror: Public attitudes to commercial access to health data

Royal Statistical Society Survey carried out by Ipsos MORI: The Data Trust Deficit

Can new datasharing laws win social legitimacy, public trust and support without public engagement?

I’ve been struck by stories I’ve heard on the datasharing consultation, on data science, and on data infrastructures as part of ‘government as a platform’ (#GaaPFuture) in recent weeks. The audio recorded by the Royal Statistical Society on March 17th is excellent, and there were some good questions asked.

There were even questions from insurance backed panels to open up more data for commercial users, and calls for journalists to be seen as accredited researchers, as well as to include health data sharing. Three things that some stakeholders, all users of data, feel are  missing from consultation, and possibly some of those with the most widespread public concern and lowest levels of public trust. [1]

What I feel is missing in consultation discussions are:

  1. a representative range of independent public voice
  2. a compelling story of needs – why tailored public services benefits citizens from whom data is taken, not only benefits data users
  3. the impacts we expect to see in local government
  4. any cost/risk/benefit assessment of those impacts, or for citizens
  5. how the changes will be independently evaluated – as some are to be reviewed

The Royal Statistical Society and ODI have good summaries here of their thoughts, more geared towards the statistical and research aspects of data,  infrastructure and the consultation.

I focus on the other strands that use identifiable data for targeted interventions. Tailored public services, Debt, Fraud, Energy Companies’ use. I think we talk too little of people, and real needs.

Why the State wants more datasharing is not yet a compelling story and public need and benefit seem weak.

So far the creation of new data intermediaries, giving copies of our personal data to other public bodies  – and let’s be clear that this often means through commercial representatives like G4S, Atos, Management consultancies and more –  is yet to convince me of true public needs for the people, versus wants from parts of the State.

What the consultation hopes to achieve, is new powers of law, to give increased data sharing increased legal authority. However this alone will not bring about the social legitimacy of datasharing that the consultation appears to seek through ‘open policy making’.

Legitimacy is badly needed if there is to be public and professional support for change and increased use of our personal data as held by the State, which is missing today,  as care.data starkly exposed. [2]

The gap between Social Legitimacy and the Law

Almost 8 months ago now, before I knew about the datasharing consultation work-in-progress, I suggested to BIS that there was an opportunity for the UK to drive excellence in public involvement in the use of public data by getting real engagement, through pro-active consent.

The carrot for this, is achieving the goal that government wants – greater legal clarity, the use of a significant number of consented people’s personal data for complex range of secondary uses as a secondary benefit.

It was ignored.

If some feel entitled to the right to infringe on citizens’ privacy through a new legal gateway because they believe the public benefit outweighs private rights, then they must also take on the increased balance of risk of doing so, and a responsibility to  do so safely. It is in principle a slippery slope. Any new safeguards and ethics for how this will be done are however unclear in those data strands which are for targeted individual interventions. Especially if predictive.

Upcoming discussions on codes of practice [which have still to be shared] should demonstrate how this is to happen in practice, but codes are not sufficient. Laws which enable will be pushed to their borderline of legal and beyond that of ethical.

In England who would have thought that the 2013 changes that permitted individual children’s data to be given to third parties [3] for educational purposes, would mean giving highly sensitive, identifiable data to journalists without pupils or parental consent? The wording allows it. It is legal. However it fails the DPA Act legal requirement of fair processing.  Above all, it lacks social legitimacy and common sense.

In Scotland, there is current anger over the intrusive ‘named person’ laws which lack both professional and public support and intrude on privacy. Concerns raised should be lessons to learn from in England.

Common sense says laws must take into account social legitimacy.

We have been told at the open policy meetings that this change will not remove the need for informed consent. To be informed, means creating the opportunity for proper communications, and also knowing how you can use the service without coercion, i.e. not having to consent to secondary data uses in order to get the service, and knowing to withdraw consent at any later date. How will that be offered with ways of achieving the removal of data after sharing?

The stick for change, is the legal duty that the recent 2015 CJEU ruling reiterating the legal duty to fair processing [4] waved about. Not just a nice to have, but State bodies’ responsibility to inform citizens when their personal data are used for purposes other than those for which those data had initially been consented and given. New legislation will not  remove this legal duty.

How will it be achieved without public engagement?

Engagement is not PR

Failure to act on what you hear from listening to the public is costly.

Engagement is not done *to* people, don’t think explain why we need the data and its public benefit’ will work. Policy makers must engage with fears and not seek to dismiss or diminish them, but acknowledge and mitigate them by designing technically acceptable solutions. Solutions that enable data sharing in a strong framework of privacy and ethics, not that sees these concepts as barriers. Solutions that have social legitimacy because people support them.

Mr Hunt’s promised February 2014 opt out of anonymised data being used in health research, has yet to be put in place and has had immeasurable costs for delayed public research, and public trust.

How long before people consider suing the DH as data controller for misuse? From where does the arrogance stem that decides to ignore legal rights, moral rights and public opinion of more people than those who voted for the Minister responsible for its delay?

 

This attitude is what fails care.data and the harm is ongoing to public trust and to confidence for researchers’ continued access to data.

The same failure was pointed out by the public members of the tiny Genomics England public engagement meeting two years ago in March 2014, called to respond to concerns over the lack of engagement and potential harm for existing research. The comms lead made a suggestion that the new model of the commercialisation of the human genome in England, to be embedded in the NHS by 2017 as standard clinical practice, was like steam trains in Victorian England opening up the country to new commercial markets. The analogy was felt by the lay attendees to be, and I quote, ‘ridiculous.’

Exploiting confidential personal data for public good must have support and good two-way engagement if it is to get that support, and what is said and agreed must be acted on to be trustworthy.

Policy makers must take into account broad public opinion, and that is unlikely to be submitted to a Parliamentary consultation. (Personally, I first knew such  processes existed only when care.data was brought before the Select Committee in 2014.) We already know what many in the public think about sharing their confidential data from the work with care.data and objections to third party access, to lack of consent. Just because some policy makers don’t like what was said, doesn’t make that public opinion any less valid.

We must bring to the table the public voice from past but recent public engagement work on administrative datasharing [5], the voice of the non-research community, and from those who are not stakeholders who will use the data but the ‘data subjects’, the public  whose data are to be used.

Policy Making must be built on Public Trust

Open policy making is not open just because it says it is. Who has been invited, participated, and how their views actually make a difference on content and implementation is what matters.

Adding controversial ideas at the last minute is terrible engagement, its makes the process less trustworthy and diminishes its legitimacy.

This last minute change suggests some datasharing will be dictated despite critical views in the policy making and without any public engagement. If so, we should ask policy makers on what mandate?

Democracy depends on social legitimacy. Once you lose public trust, it is not easy to restore.

Can new datasharing laws win social legitimacy, public trust and support without public engagement?

In my next post I’ll post look at some of the public engagement work done on datasharing to date, and think about ethics in how data are applied.

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

References:

[1] The Royal Statistical Society data trust deficit

[2] “The social licence for research: why care.data ran into trouble,” by Carter et al.

[3] FAQs: Campaign for safe and ethical National Pupil Data

[4] CJEU Bara 2015 Ruling – fair processing between public bodies

[5] Public Dialogues using Administrative data (ESRC / ADRN)

img credit: flickr.com/photos/internetarchivebookimages/

On the Boundaries of Being Human and Big Data

Atlas, the Boston Dynamics created robot, won hearts and minds this week as it stoically survived man being mean.  Our collective human response was an emotional defence of the machine, and criticism of its unfair treatment by its tester.

Some on Twitter recalled the incident of Lord of The Flies style bullying by children in Japan that led the programmers to create an algorithm for ‘abuse avoidance’.

The concepts of fairness and of decision making algorithms for ‘abuse avoidance’ are interesting from perspectives of data mining, AI and the wider access to and use of tech in general, and in health specifically.

If the decision to avoid abuse can be taken out of an individual’s human hands and are based on unfathomable amounts of big data, where are its limits applied to human behaviour and activity?

When it is decided that an individual’s decision making capability is impaired or has been forfeited their consent may be revoked in their best interest.

Who has oversight of the boundaries of what is acceptable for one person, or for an organisation, to decide what is in someone else’s best interest, or indeed, the public interest?

Where these boundaries overlap – personal abuse avoidance, individual best interest and the public interest – and how society manage them, with what oversight, is yet to be widely debated.

The public will shortly be given the opportunity to respond to plans for the expansion of administrative datasharing in England through consultation.

We must get involved and it must be the start of a debate and dialogue not simply a tick-box to a done-deal, if data derived from us are to be used as a platform for future to “achieve great results for the NHS and everyone who depends on it.”

Administering applied “abuse avoidance” and Restraining Abilities

Administrative uses and secondary research using the public’s personal data are applied not only in health, but across the board of public bodies, including big plans for tech in the justice system.

An example in the news this week of applied tech and its restraint on human behaviour was ankle monitors.  While one type was abandoned by the MOJ at a cost of £23m on the same day more funding for transdermal tags was announced in London.

The use of this technology as a monitoring tool, should not of itself be a punishment. It is said compliance is not intended to affect the dignity of individuals who are being monitored, but through the collection of personal and health data  will ensure the deprivation of alcohol – avoiding its abuse for a person’s own good and in the public interest. Is it fair?

Abstinence orders might be applied to those convicted of crimes such as assault, being drunk and disorderly and drunk driving.

We’re yet to see much discussion of how these varying degrees of integration of tech with the human body, and human enhancement will happen through robot elements in our human lives.

How will the boundaries of what is possible and desirable be determined and by whom with what oversight?

What else might be considered as harmful as alcohol to individuals and to  society? Drugs? Nictotine? Excess sugar?

As we wonder about the ethics of how humanoids will act and the aesthetics of how human they look, I wonder how humane are we being, in all our ‘public’ tech design and deployment?

Umberto Eco who died on Friday wrote in ‘The birth of ethics’ that there are universal ideas on constraints, effectively that people should not harm other people, through deprivation, restrictions or psychological torture. And that we should not impose anything on others that “diminishes or stifles our capacity to think.”

How will we as a society collectively agree what that should look like, how far some can impose on others, without consent?

Enhancing the Boundaries of Being Human

Technology might be used to impose bodily boundaries on some people, but tech can also be used for the enhancement of others. retweeted this week, the brilliant Angel Giuffria’s arm.

While the technology in this case is literally hands-on in its application, increasingly it is not the technology itself but the data that it creates or captures which enables action through data-based decision making.

Robots that are tiny may be given big responsibilities to monitor and report massive amounts of data. What if we could swallow them?

Data if analysed and understood, become knowledge.

Knowledge can be used to inform decisions and take action.

So where are the boundaries of what data may be extracted,  information collated, and applied as individual interventions?

Defining the Boundaries of “in the Public Interest”

Where are boundaries of what data may be created, stored, and linked to create a detailed picture about us as individuals, if the purpose is determined to be in the public interest?

Who decides which purposes are in the public interest? What qualifies as research purposes? Who qualifies as meeting the criteria of ‘researcher’?

How far can research and interventions go without consent?

Should security services and law enforcement agencies always be entitled to get access to individuals’ data ‘in the public interest’?

That’s something Apple is currently testing in the US.

Should research bodies always be entitled to get access to individuals’ data ‘in the public interest’?

That’s something care.data tried and failed to assume the public supported and has yet to re-test. Impossible before respecting the opt out that was promised over two years ago in March 2014.

The question how much data research bodies may be ‘entitled to’ will be tested again in the datasharing consultation in the UK.

How data already gathered are used in research may be used differently from it is when we consent to its use at colllection. How this changes over time and its potential for scope creep is seen in Education. Pupil data has gone from passive collection of name to giving it out to third parties, to use in national surveys, so far.

And what of the future?

Where is the boundary between access and use of data not in enforcement of acts already committed but in their prediction and prevention?

If you believe there should be an assumption of law enforcement access to data when data are used for prediction and prevention, what about health?

Should there be any difference between researchers’ access to data when data are used for past analysis and for use in prediction?

If ethics define the boundary between what is acceptable and where actions by one person may impose something on another that “diminishes or stifles our capacity to think” – that takes away our decision making capacity – that nudges behaviour, or acts on behaviour that has not yet happened, who decides what is ethical?

How does a public that is poorly informed about current data practices, become well enough informed to participate in the debate of how data management should be designed today for their future?

How Deeply Mined should our Personal Data be?

The application of technology, non-specific but not yet AI, was also announced this week in the Google DeepMind work in the NHS.

Its first key launch app co-founder provided a report that established the operating framework for the Behavioural Insights Team established by Prime Minister David Cameron.

A number of highly respected public figures have been engaged to act in the public interest as unpaid Independent Reviewers of Google DeepMind Health. It will be interesting to see what their role is and how transparent its workings and public engagement will be.

The recent consultation on the NHS gave overwhelming feedback that the public does not support the direction of current NHS change. Even having removed all responses associated with ‘lefty’ campaigns, concerns listed on page 11, are consistent including a request the Government “should end further involvement of the private sector in healthcare”. It appears from the response that this engagement exercise will feed little into practice.

The strength of feeling should however be a clear message to new projects that people are passionate that equal access to healthcare for all matters and that the public wants to be informed and have their voices heard.

How will public involvement be ensured as complexity increases in these healthcare add-ons and changing technology?

Will Google DeepMind pave the way to a new approach to health research? A combination of ‘nudge’ behavioural insights, advanced neural networks, Big Data and technology is powerful. How will that power be used?

I was recently told that if new research is not pushing the boundaries of what is possible and permissible then it may not be worth doing, as it’s probably been done before.

Should anything that is new that becomes possible be realised?

I wonder how the balance will be weighted in requests for patient data and their application, in such a high profile project.

Will NHS Research Ethics Committees turn down research proposals in-house in hospitals that benefit the institution or advance their reputation, or the HSCIC, ever feel able to say no to data use by Google DeepMind?

Ethics committees safeguard the rights, safety, dignity and well-being of research participants, independently of research sponsors whereas these representatives are not all independent of commercial supporters. And it has not claimed it’s trying to be an ethics panel. But oversight is certainly needed.

The boundaries of ownership between what is seen to benefit commercial and state in modern health investment is perhaps more than blurred to an untrained eye. Genomics England – the government’s flagship programme giving commercial access to the genome of 100K people –  stockholding companies, data analytics companies, genome analytic companies, genome collection, and human tissue research, commercial and academic research,  often share directors, working partnerships and funders. That’s perhaps unsurprising given such a specialist small world.

It’s exciting to think of the possibilities if, “through a focus on patient outcomes, effective oversight, and the highest ethical principles, we can achieve great results for the NHS and everyone who depends on it.”

Where will an ageing society go, if medics can successfully treat more cancer for example? What diseases will be prioritised and others left behind in what is economically most viable to prevent? How much investment will be made in diseases of the poor or in countries where governments cannot afford to fund programmes?

What will we die from instead? What happens when some causes of ‘preventative death’ are deemed more socially acceptable than others? Where might prevention become socially enforced through nudging behaviour into new socially acceptable or ethical norms?

Don’t be Evil

Given the leading edge of the company and its curiosity-by-design to see how far “can we” will reach, “don’t be evil” may be very important. But “be good” might be better. Where is that boundary?

The boundaries of what ‘being human’ means and how Big Data will decide and influence that, are unclear and changing. How will the law and regulation keep up and society be engaged in support?

Data principles such as fairness, keeping data accurate, complete and up-to-date and ensuring data are not excessive retained for no longer than necessary for the purpose are being widely ignored or exempted under the banner of ‘research’.

Can data use retain a principled approach despite this and if we accept commercial users, profit making based on public data, will those principles from academic research remain in practice?

Exempt from the obligation to give a copy of personal data to an individual on request if data are for ‘research’ purposes, data about us and our children, are extracted and stored ‘without us’. Forever. That means in a future that we cannot see, but Google DeepMind among others, is designing.

Lay understanding, and that of many climical professionals is likely to be left far behind if advanced technologies and use of big data decision-making algorithms are hidden in black boxes.

Public transparency of the use of our data and future planned purposes are needed to create trust that these purposes are wise.

Data are increasingly linked and more valuable when identifiable.

Any organisation that wants to future-proof its reputational risk will make sure data collection and use today is with consent, since future outcomes derived are likely to be in interventions for individuals or society. Catching up consent will be hard unless designed in now.

A Dialogue on the Boundaries of Being Human and Big Data

Where the commercial, personal, and public interests are blurred, the highest ethical principles are going to be needed to ensure ‘abuse avoidance’ in the use of new technology, in increased data linkage and resultant data use in research of many different kinds.

How we as a society achieve the benefits of tech and datasharing and where its boundaries lie in “the public interest” needs public debate to co-design the direction we collectively want to partake in.

Once that is over, change needs supported by a method of oversight that is responsive to new technology, data use, and its challenges.

What a channel for ongoing public dialogue, challenge and potentially recourse might look like, should be part of that debate.

Destination smart-cities: design, desire and democracy (Part two)

Smart cities: private reach in public space and personal lives

Smart-cities are growing in the UK through private investment and encroachment on public space. They are being built by design at home, and supported by UK money abroad, with enormous expansion plans in India for example, in almost 100 cities.

With this rapid expansion of “smart” technology not only within our living rooms but my living space and indeed across all areas of life, how do we ensure equitable service delivery, (what citizens generally want, as demonstrated by strength of feeling on the NHS) continues in public ownership, when the boundary in current policy is ever more blurred between public and private corporate ownership?

How can we know and plan by-design that the values we hope for, are good values, and that they will be embedded in systems, in policies and planning? Values that most people really care about. How do we ensure “smart” does not ultimately mean less good? That “smart” does not in the end mean, less human.

Economic benefits seem to be the key driver in current government thinking around technology – more efficient = costs less.

While using technology progressing towards replacing repetitive work may be positive, how will we accommodate for those whose skills will no longer be needed? In particular its gendered aspect, and the more vulnerable in the workforce, since it is women and other minorities who work disproportionately in our part-time, low skill jobs. Jobs that are mainly held by women, even what we think of as intrinsically human, such as carers, are being trialed for outsourcing or assistance by technology. These robots monitor people, in their own homes and reduce staffing levels and care home occupancy. We’ll no doubt hear how good it is we need fewer carers because after all, we have a shortage of care staff. We’ll find out whether it is positive for the cared, or whether they find it it less ‘human'[e]. How will we measure those costs?

The ideal future of us all therefore having more leisure time sounds fab, but if we can’t afford it, we won’t be spending more of our time employed in leisure. Some think we’ll simply be unemployed. And more people live in the slums of Calcutta than in Soho.

One of the greatest benefits of technology is how more connected the world can be, but will it also be more equitable?

There are benefits in remote sensors monitoring changes in the atmosphere that dictate when cars should be taken off the roads on smog-days, or indicators when asthma risk-factors are high.

Crowd sourcing information about things which are broken, like fix-my-street, or lifts out-of-order are invaluable in cities for wheelchair users.

Innovative thinking and building things through technology can create things which solve simple problems and add value to the person using the tool.

But what of the people that cannot afford data, cannot be included in the skilled workforce, or will not navigate apps on a phone?

How this dis-incentivises the person using the technology has not only an effect on their disappointment with the tool, but the service delivery, and potentially wider still even to societal exclusion or stigma.These were the findings of the e-red book in Glasgow explained at the Digital event in health, held at the King’s Fund in summer 2015.

Further along the scale of systems and potential for negative user experience, how do we expect citizens to react to finding punishments handed out by unseen monitoring systems, finding out our behaviour was ‘nudged’ or find decisions taken about us, without us?

And what is the oversight and system of redress for people using systems, or whose data are used but inaccurate in a system, and cause injustice?

And wider still, while we encourage big money spent on big data in our part of the world how is it contributing to solving problems for millions for whom they will never matter? Digital and social media makes increasingly transparent our one connected world, with even less excuse for closing our eyes.

Approximately 15 million girls worldwide are married each year – that’s one girl, aged under 18, married off against her will every two seconds. [Huff Post, 2015]

Tinder-type apps are luxury optional extras for many in the world.

Without embedding values and oversight into some of what we do through digital tools implemented by private corporations for profit, ‘smart’ could mean less fair, less inclusive, less kind. Less global.

If digital becomes a destination, and how much it is implemented is seen as a measure of success, by measuring how “smart” we become risks losing sight of seeing technology as solutions and steps towards solving real problems for real people.

We need to be both clever and sensible, in our ‘smart’.

Are public oversight and regulation built in to make ‘smart’ also be safe?

If there were public consultation on how “smart” society will look would we all agree if and how we want it?

Thinking globally, we need to ask if we are prioritising the wrong problems? Are we creating more tech that we already have invented solutions for place where governments are willing to spend on them? And will it in those places make the society more connected across class and improve it for all, or enhance the lives of the ‘haves’ by having more, and the ‘have-nots’ be excluded?

Does it matter how smart your TV gets, or carer, or car, if you cannot afford any of these convenient add-ons to Life v1.1?

As we are ever more connected, we are a global society, and being ‘smart’ in one area may be reckless if at the expense or ignorance of another.

People need to Understand what “Smart” means

“Consistent with the wider global discourse on ‘smart’ cities, in India urban problems are constructed in specific ways to facilitate the adoption of “smart hi-tech solutions”. ‘Smart’ is thus likely to mean technocratic and centralized, undergirded by alliances between the Indian government and hi-technology corporations.”  [Saurabh Arora, Senior Lecturer in Technology and Innovation for Development at SPRU]

Those investing in both countries are often the same large corporations. Very often, venture capitalists.

Systems designed and owned by private companies provide the information technology infrastructure that i:

the basis for providing essential services to residents. There are many technological platforms involved, including but not limited to automated sensor networks and data centres.’

What happens when the commercial and public interest conflict and who decides that they do?

Decision making, Mining and Value

Massive amounts of data generated are being mined for making predictions, decisions and influencing public policy: in effect using Big Data for research purposes.

Using population-wide datasets for social and economic research today, is done in safe settings, using deidentified data, in the public interest, and has independent analysis of the risks and benefits of projects as part of the data access process.

Each project goes before an ethics committee review to assess its considerations for privacy and not only if the project can be done, but should be done, before it comes for central review.

Similarly our smart-cities need ethics committee review assessing the privacy impact and potential of projects before commissioning or approving smart-technology. Not only assessing if they are they feasible, and that we ‘can’ do it, but ‘should’ we do it. Not only assessing the use of the data generated from the projects, but assessing the ethical and privacy implications of the technology implementation itself.

The Committee recommendations on Big Data recently proposed that a ‘Council of Data Ethics’ should be created to explicitly address these consent and trust issues head on. But how?

Unseen smart-technology continues to grow unchecked often taking root in the cracks between public-private partnerships.

We keep hearing about Big Data improving public services but that “public” data is often held by private companies. In fact our personal data for public administration has been widely outsourced to private companies of which we have little oversight.

We’re told we paid the price in terms of skills and are catching up.

But if we simply roll forward in first gear into the connected city that sees all, we may find we arrive at a destination that was neither designed nor desired by the majority.

We may find that the “revolution, not evolution”, hoped for in digital services will be of the unwanted kind if companies keep pushing more and more for more data without the individual’s consent and our collective public buy-in to decisions made about data use.

Having written all this, I’ve now read the Royal Statistical Society’s publication which eloquently summarises their recent work and thinking. But I wonder how we tie all this into practical application?

How we do governance and regulation is tied tightly into the practicality of public-private relationships but also into deciding what should society look like? That is what our collective and policy decisions about what smart-cities should be and may do, is ultimately defining.

I don’t think we are addressing in depth yet the complexity of regulation and governance that will be sufficient to make Big Data and Public Spaces safe because companies say too much regulation risks choking off innovation and creativity.

But that risk must not be realised if it is managed well.

Rather we must see action to manage the application of smart-technology in a thoughtful way quickly, because if we do not, very soon, we’ll have lost any say in how our service providers deliver.

*******

I began my thoughts about this in Part one, on smart technology and data from the Sprint16 session and after this (Part two), continue to look at the design and development of smart technology making “The Best Use of Data” with a UK company case study (Part three) and “The Best Use of Data” used in predictions and the Future (Part four).

Destination smart-cities: design, desire and democracy (Part one)

When I drop my children at school in the morning I usually tell them three things: “Be kind. Have fun. Make good choices.”

I’ve been thinking recently about what a positive and sustainable future for them might look like. What will England be in 10 years?

The #Sprint16 snippets I read talk about how: ”Digital is changing how we deliver every part of government,” and “harnessing the best of digital and technology, and the best use of data to improve public services right across the board.”

From that three things jumped out at me:

  • The first is that the “best use of data” in government’s opinion may conflict with that of the citizen.
  • The second, is how to define “public services” right across the board in a world in which boundaries between private and public in the provision of services have become increasingly blurred.
  • And the third is the power of tech to offer both opportunity and risk if used in “every part of government” and effects on access to, involvement in, and the long-term future of, democracy.

What’s the story so far?

In my experience so far of trying to be a digital citizen “across the board” I’ve seen a few systems come and go. I still have my little floppy paper Government Gateway card, navy blue with yellow and white stripes. I suspect it is obsolete. I was a registered Healthspace user, and used it twice. It too, obsolete. I tested my GP online service. It was a mixed experience.

These user experiences are shaping how I interact with new platforms and my expectations of organisations, and I will be interested to see what the next iteration, nhs alpha, offers.

How platforms and organisations interact with me, and my data, is however increasingly assumed without consent. This involves new data collection, not only using data from administrative or commercial settings to which I have agreed, but new scooping of personal data all around us in “smart city” applications.

Just having these digital applications will be of no benefit and all the disadvantages of surveillance for its own sake will be realised.

So how do we know that all these data collected are used – and by whom? How do we ensure that all the tracking actually gets turned into knowledge about pedestrian and traffic workflow to make streets and roads safer and smoother in their operation, to make street lighting more efficient, or the environment better to breathe in and enjoy? And that we don’t just gift private providers tonnes of valuable data which they simply pass on to others for profit?

Because without making things better, in this Internet-of-Things will be a one-way ticket to power in the hands of providers and loss of control, and quality of life. We’ll work around it, but buying a separate SIM card for trips into London, avoiding certain parks or bridges, managing our FitBits to the nth degree under a pseudonym. But being left no choice but to opt out of places or the latest technology to enjoy, is also tedious. If we want to buy a smart TV to access films on demand, but don’t want it to pass surveillance or tracking information back to the company how can we find out with ease which products offer that choice?

Companies have taken private information that is none of their business, and quite literally, made it their business.

The consumer technology hijack of “smart” to always mean marketing surveillance creates a divide between those who will comply for convenience and pay the price in their privacy, and those who prize privacy highly enough to take steps that are less convenient, but less compromised.

But even wanting the latter, it can be so hard to find out how to do, that people feel powerless and give-in to the easy option on offer.

Today’s system of governance and oversight that manages how our personal data are processed by providers of public and private services we have today, in both public and private space, is insufficient to meet the values most people reasonably expect, to be able to live their life without interference.

We’re busy playing catch up with managing processing and use, when many people would like to be able to control collection.

The Best use of Data: Today

My experience of how the government wants to ‘best use data’ is that until 2013 I assumed the State was responsible with it.

I feel bitterly let down.

care.data taught me that the State thinks my personal data and privacy are something to exploit, and “the best use of my data” for them, may be quite at odds with what individuals expect. My trust in the use of my health data by government has been low ever since. Saying one thing and doing another, isn’t making it more trustworthy.

I found out in 2014 how my children’s personal data are commercially exploited and given to third parties including press outside safe settings, by the Department for Education. Now my trust is at rock bottom. I tried to take a look at what the National Pupil Database stores on my own children and was refused a subject access request, meanwhile the commercial sector and Fleet Street press are given out not only identifiable data, but ‘highly sensitive’ data. This just seems plain wrong in terms of security, transparency and respect for the person.

The attitude that there is an entitlement of the State to individuals’ personal data has to go.

The State has pinched 20 m children’s privacy without asking. Tut Tut indeed. [see Very British Problems for a translation].

And while I support the use of public administrative data in deidentified form in safe settings, it’s not to be expected that anything goes. But the feeling of entitlement to access our personal data for purposes other than that for which we consented, is growing, as it stretches to commercial sector data. However suggesting that public feeling measured based on work with 0.0001% of the population, is “wide public support for the use and re-use of private sector data for social research” seems tenuous.

Even so, comments even in that tiny population suggested, “many participants were taken by surprise at the extent and size of data collection by the private sector” and some “felt that such data capture was frequently unwarranted.” “The principal concerns about the private sector stem from the sheer volume of data collected with and without consent from individuals and the profits being made from linking data and selling data sets.”

The Best use of Data: The Future

Young people, despite seniors often saying “they don’t care about privacy” are leaving social media in search of greater privacy.

These things cannot be ignored if the call for digital transformation between the State and the citizen is genuine because try and do it to us and it will fail. Change must be done with us. And ethically.

And not “ethics” as in ‘how to’, but ethics of “should we.” Qualified transparent evaluation as done in other research areas, not an add on, but integral to every project, to look at issues such as:

  • whether participation is voluntary, opt-out or covert
  • how participants can get and give informed consent
  • accessibility to information about the collection and its use
  • small numbers, particularly of vulnerable people included
  • identifiable data collection or disclosure
  • arrangements for dealing with disclosures of harm and recourse
  • and how the population that will bear the risks of participating in the research is likely to benefit from the knowledge derived from the research or not.

Ethics is not about getting away with using personal data in ways that won’t get caught or hauled over the coals by civil society.

It’s balancing risk and benefit in the public interest, and not always favouring the majority, but doing what is right and fair.

We hear a lot at the moment on how the government may see lives, shaped by digital skills, but too little of heir vison for what living will look and feel like, in smart cities of the future.

My starting question is, how does government hope society will live there and is it up to them to design it? If not, who is because these smart-city systems are not designing themselves. You’ve heard of Stepford wives. I wonder what do we do if we do not want to live like Milton Keynes man?

I hope that the world my children will inherit will be more just, more inclusive, and with a more sustainable climate to support food, livelihoods and kinder than it is today. Will ‘smart’ help or hinder?

What is rarely discussed in technology discussions is how the service should look regardless of technology. The technology assumed as inevitable, becomes the centre of service delivery.

I’d like to first understand what is the central and local government vision for “public services”  provision for people of the future? What does it mean for everyday services like schools and health, and how does it balance security and our freedoms?

Because without thinking about how and who provides those services for people, there is a hole in the discussion of “the best use of data” and their improvement “right across the board”.

The UK government has big plans for big data sharing, sharing across all public bodies, some tailored for individual interventions.

While there are interesting opportunities for public benefit from at-scale systems, the public benefit is at risk not only from lack of trust in how systems gather data and use them, but that interoperability in service, and the freedom for citizens to transfer provider, gets lost in market competition.

Openness and transparency can be absent in public-private partnerships until things go wrong. Given the scale of smart-cities, we must have more than hope that data management and security will not be one of those things.

How will we know if new plans are designed well, or not?

When I look at my children’s future and how our current government digital decision making may affect it, I wonder if their future will be more or less kind. More or less fun.

Will they be left with the autonomy to make good choices of their own?

The hassle we feel when we feel watched all the time, by every thing that we own, in every place we go, having to check every check box has a reasonable privacy setting, has a cumulative cost in our time and anxieties.

Smart technology has invaded not only our public space and our private space, but has nudged into our head space.

I for one have had enough already. For my kids I want better. Technology should mean progress for people, not tyranny.

Living in smart cities, connected in the Internet-of-Things, run on their collective Big Data and paid for by commercial corporate providers, threatens not only their private lives and well-being, their individual and independent lives, but ultimately independent and democratic government as we know it.

*****

This is the start of a four part set of thoughts: Beginnings with smart technology and data triggered by the Sprint16 session (part one). I think about this more in depth in “Smart systems and Public Services” (Part two) here, and the design and development of smart technology making “The Best Use of Data” looking at today in a UK company case study (Part three) before thoughts on “The Best Use of Data” used in predictions and the Future (Part four).

Breaking up is hard to do. Restructuring education in England.

This Valentine’s I was thinking about the restructuring of education in England and its wide ranging effects. It’s all about the break up.

The US EdTech market is very keen to break into the UK, and our front door is open.

We have adopted the model of Teach First partnered with Teach America, while some worry we do not ask “What is education for?

Now we hear the next chair of Oftsed is to be sought from the US, someone who is renowned as “the scourge of the unions.”

Should we wonder how long until the management of schools themselves is US-sourced?

The education system in England has been broken up in recent years into manageable parcels  – for private organisations, schools within schools, charity arms of commercial companies, and multi-school chains to take over – in effect, recent governments have made reforms that have dismantled state education as I knew it.

Just as the future vision of education outlined in the 2005 Direct Democracy co-authored by Michael Gove said, “The first thing to do is to make existing state schools genuinely independent of the state.”

Free schools touted as giving parents the ultimate in choice, are in effect another way to nod approval to the outsourcing of the state, into private hands, and into big chains. Despite seeing the model fail spectacularly abroad, the government seems set on the same here.

Academies, the route that finagles private corporations into running public-education is the preferred model, says Mr Cameron. While there are no plans to force schools to become academies, the legislation currently in ping-pong under the theme of coasting schools enables just that. The Secretary of State can impose academisation. Albeit only on Ofsted labeled ‘failing’ schools.

What fails appears sometimes to be a school that staff and parents cannot understand as anything less than good, but small. While small can be what parents want, small pupil-teacher ratios, mean higher pupil-per teacher costs. But the direction of growth is towards ‘big’ is better’.

“There are now 87 primary schools with more than 800 pupils, up from 77 in 2014 and 58 in 2013. The number of infants in classes above the limit of 30 pupils has increased again – with 100,800 pupils in these over-sized classes, an increase of 8% compared with 2014.” [BBC]

All this restructuring creates costs about which the Department wants to be less than transparent.  And has lost track of.

If only we could see that these new structures raised standards?  But,” while some chains have clearly raised attainment, others achieve worse outcomes creating huge disparities within the academy sector.”

If not delivering better results for children, then what is the goal?

A Valentine’s view of Public Service Delivery: the Big Break up

Breaking up the State system, once perhaps unthinkable is possible through the creation of ‘acceptable’ public-private partnerships (as opposed to outright privatisation per se). Schools become academies through a range of providers and different pathways, at least to start with, and as they fail, the most successful become the market leaders in an oligopoly. Ultimately perhaps, this could become a near monopoly. Delivering ‘better’. Perhaps a new model, a new beginning, a new provider offering salvation from the flood of ‘failing’ schools coming to the State’s rescue.

In order to achieve this entry to the market by outsiders, you must first remove conditions seen as restrictive, giving more ‘freedom’ to providers; to cut corners make efficiency savings on things like food standards, required curriculum, and numbers of staff, or their pay.

And what if, as a result, staff leave, or are hard to recruit?

Convincing people that “tech” and “digital” will deliver cash savings and teach required skills through educational machine learning is key if staff costs are to be reduced, which in times of austerity and if all else has been cut, is the only budget left to slash.

Self-taught systems’ providers are convincing in their arguments that tech is the solution.

Sadly I remember when a similar thing was tried on paper. My first year of GCSE maths aged 13-14  was ‘taught’ at our secondary comp by working through booklets in a series that we self-selected from the workbench in the classroom. Then we picked up the master marking-copy once done. Many of the boys didn’t need long to work out the first step was an unnecessary waste of time. The teacher had no role in the classroom. We were bored to bits. By the final week at end of the year they sellotaped the teacher to his chair.

I kid you not.

Teachers are so much more than knowledge transfer tools, and yet by some today seem to be considered replaceable by technology.

The US is ahead of us in this model, which has grown hand-in-hand with commercialism in schools. Many parents are unhappy.

So is the DfE setting us up for future heartbreak if it wants us to go down the US route of more MOOCs, more tech, and less funding and fewer staff? Where’s the cost benefit risk analysis and transparency?

We risk losing the best of what is human from the classroom, if we will remove the values they model and inspire. Unions and teachers and educationalists are I am sure, more than aware of all these cumulative changes. However the wider public seems little engaged.

For anyone ‘in education’ these changes will all be self-evident and their balance of risks and benefits a matter of experience, and political persuasion. As a parent I’ve only come to understand these changes, through researching how our pupils’ personal and school data have been commercialised,  given away from the National Pupil Database without our consent, since legislation changed in 2013; and the Higher Education student and staff data sold.

Will more legislative change be needed to keep our private data accessible in public services operating in an increasingly privately-run delivery model? And who will oversee that?

The Education Market is sometimes referred to as ‘The Wild West’. Is it getting a sheriff?

The news that the next chair of Oftsed is to be sought from the US did set alarm bells ringing for some in the press, who fear US standards and US-led organisations in British schools.

“The scourge of unions” means not supportive of staff-based power and in health our junior doctors have clocked exactly what breaking their ‘union’ bargaining power is all about.  So who is driving all this change in education today?

Some ed providers might be seen as profiting individuals from the State break up. Some were accused of ‘questionable practices‘. Oversight has been lacking others said. Margaret Hodge in 2014 was reported to have said: “It is just wrong to hand money to a company in which you have a financial interest if you are a trustee.”

I wonder if she has an opinion on a lead non-executive board member at the Department for Education also being the director of one of the biggest school chains? Or the ex Minister now employed by the same chain? Or that his campaign was funded by the same Director?  Why this register of interests is not transparent is a wonder.

It could appear to an outsider that the private-public revolving door is well oiled with sweetheart deals.

Are the reforms begun by Mr Gove simply to be executed until their end goal, whatever that may be, through Nikky Morgan or she driving her own new policies?

If Ofsted were  to become US-experience led, will the Wild West be tamed or US providers invited to join the action, reshaping a new frontier? What is the end game?

Breaking up is not hard to do, but in whose best interest is it?

We need only look to health to see the similar pattern.

The structures are freed up, and boundaries opened up (if you make the other criteria) in the name of ‘choice’. The organisational barriers to break up are removed in the name of ‘direct accountability’. And enabling plans through more ‘business intelligence’ gathered from data sharing, well, those plans abound.

Done well, new efficient systems and structures might bring public benefits, the right technology can certainly bring great things, but have we first understood what made the old less efficient if indeed it was and where are those baselines to look back on?

Where is the transparency of the end goal and what’s the price the Department is prepared to pay in order to reach it?

Is reform in education, transparent in its ideology and how its success is being measured if not by improved attainment?

The results of change can also be damaging. In health we see failing systems and staff shortages and their knock-on effects into patient care. In schools, these failures damage children’s start in life, it’s not just a ‘system’.

Can we assess if and how these reforms are changing the right things for the right reasons? Where is the transparency of what problems we are trying to solve, to assess what solutions work?

How is change impact for good and bad being measured, with what values embedded, with what oversight, and with whose best interests at its heart?

2005’s Direct Democracy could be read as a blueprint for co-author Mr Gove’s education reforms less than a decade later.

Debate over the restructuring of education and its marketisation seems to have bypassed most of us in the public, in a way health has not.

Underperformance as measured by new and often hard to discern criteria, means takeover at unprecedented pace.

And what does this mean for our most vulnerable children? SEN children are not required to be offered places by academies. The 2005 plans co-authored by Mr Gove also included: “killing the government’s inclusion policy stone dead,” without an alternative.

Is this the direction of travel our teachers and society supports?

What happens when breakups happen and relationship goals fail?

Who picks up the pieces? I fear the state is paying heavily for the break up deals, investing heavily in new relationships, and yet will pay again for failure. And so will our teaching staff, and children.

While Mr Hunt is taking all the heat right now, for his part in writing Direct Democracy and its proposals to privatise health – set against the current health reforms and restructuring of junior doctors contracts – we should perhaps also look to Mr Gove co-author, and ask to better understand the current impact of his recent education reforms, compare them with what he proposed in 2005, and prepare for the expected outcomes of change before it happens (see p74).

One outcome was that failure was to be encouraged in this new system, and Sweden held up as an exemplary model:

“Liberating state schools would also allow the all-important freedom to fail.”

As Anita Kettunen, principal of JB Akersberga in Sweden reportedly said when the free schools chain funded by a private equity firm failed:

“if you’re going to have a system where you have a market, you have to be ready for this.”

Breaking up can be hard to do. Failure hurts. Are we ready for this?
******

 

Abbreviated on Feb 18th.

 

Monitoring software in schools: the Department for Education’s digital dream or nightmare? (2)

“Children do not lose their human rights by virtue of passing through the school gates” (UN Committee on the Rights of the Child, General Comment on ‘The aims of education’, 2001).

The Digital Skills in Schools inquiry [1] is examining the gap in education of our children to enable them to be citizens fit for the future.

We have an “educational gap” in digital skills and I have suggested it should not be seen only as functional or analytical, but should also address a gap in ethical skills and framework to equip our young people to understand their digital rights, as well as responsibilities.

Children must be enabled in education with opportunity to understand how they can grow “to develop physically, mentally, morally, spiritually and socially in a healthy and normal manner and in conditions of freedom and dignity”. [2]

Freedom to use the internet in privacy does not mean having to expose children to risks, but we should ask, are there ways of implementing practices which are more proportionate, and less intrusive than monitoring and logging keywords [3] for every child in the country? What problem is the DfE trying to solve and how?

Nicky Morgan’s “fantastic” GPS tracking App

The second technology tool Nicky Morgan mentioned in her BETT speech on January 22nd, is an app with GPS tracking and alerts creation. Her app verdict was “excellent” and “fantastic”:

“There are excellent examples at the moment such as the Family First app by Group Call. It uses GPS in mobile phones to help parents keep track of their children’s whereabouts, allowing them to check that they have arrived safely to school, alerting them if they stray from their usual schedule.” [4]

I’m not convinced tracking every child’s every move is either excellent or fantastic. Primarily because it will foster a nation of young people who feel untrusted, and I see a risk it could create a lower sense of self-reliance, self-confidence and self-responsibility.

Just as with the school software monitoring [see part one], there will be a chilling effect on children’s freedom if these technologies become the norm. If you fear misusing a word in an online search, or worry over stigma what others think, would you not change your behaviour? Our young people need to feel both secure and trusted at school.

How we use digital in schools shapes our future society

A population that trusts one another and trusts its government and organisations and press, is vital to a well functioning society.

If we want the benefits of a global society, datasharing for example to contribute to medical advance, people must understand how their own data and digital footprint fits into a bigger picture to support it.

In schools today pupils and parents are not informed that their personal confidential data are given to commercial third parties by the Department for Education at national level [5]. Preventing public engagement, hiding current practices, downplaying the risks of how data are misused, also prevents fair and transparent discussion of its benefits and how to do it better. Better, like making it accessible only in a secure setting not handing data out to Fleet Street.

For children this holds back public involvement in the discussion of the roles of technology in their own future. Fear of public backlash over poor practices must not hold back empowering our children’s understanding of digital skills and how their digital identity matters.

Digital skills are not shorthand for coding, but critical life skills

Skills our society will need must simultaneously manage the benefits to society and deal with great risks that will come with these advances in technology; advances in artificial intelligence, genomics, and autonomous robots, to select only three examples.

There is a glaring gap in their education how their own confidential personal data and digital footprint fit a globally connected society, and how they are used by commercial business and third parties.

There are concerns how apps could be misused by others too.

If we are to consider what is missing in our children’s preparations for life in which digital will no longer be a label but a way of life, then to identify the gap, we must first consider what we see as whole.

Rather than keeping children safe in education, as regards data sharing and digital privacy, the DfE seems happy to keep them ignorant. This is no way to treat our young people and develop their digital skills, just as giving their data away is not good cyber security.

What does a Dream for a  great ‘digital’ Society look like?

Had Martin Luther King lived to be 87 he would have continued to inspire hope and to challenge us to fulfill his dream for society – where everyone would have an equal opportunity for “life, liberty and the pursuit of happiness.”

Moving towards that goal, supported with technology, with ethical codes of practice, my dream is we see a more inclusive, fulfilled, sustainable and happier society. We must educate our children as fully rounded digital and data savvy individuals, who trust themselves and systems they use, and are well treated by others.

Sadly, introductions of these types of freedom limiting technologies for our children, risk instead that it may be a society in which many people do not feel comfortable, that lost sight of the value of privacy.

References:

[1] Digital Skills Inquiry: http://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/inquiries/parliament-2015/digital-skills-inquiry-15-16/

[2] UN Convention of the Rights of the Child

[3] Consultation: Keeping Children Safe in Education – closing Feb 16thThe “opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and proprieties “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities.

The Consultation Guidance: most relevant paragraphs 75 and 77 p 22

[4] Nicky Morgan’s full speech at BETT

[5] The defenddigitalme campaign to ask the Department forEducation to change practices and policy around The National Pupil Database

 

 

Monitoring software in schools: the Department for Education’s digital dream or nightmare? (1)

Nicky Morgan, the Education Secretary,  gave a speech [1] this week and shared her dream of the benefits technology for pupils.

It mentioned two initiatives to log children’s individual actions; one is included in a consultation on new statutory guidance, and the other she praised, is a GPS based mobile monitoring app.

As with many new applications of technology, how the concept is to be implemented in practice is important to help understand how intrusive any new use of data is going to be.

Unfortunately for this consultation there is no supporting code of practice what the change will mean, and questions need asked.

The most significant aspects in terms of changes to data collection through required monitoring are in the areas of statutory monitoring, systems, and mandatory teaching of ‘safeguarding’:

Consultation p11/14: “We believe including the requirement to ensure appropriate filtering and monitoring are in place, in statutory guidance, is proportional and reasonable in order to ensure all schools and colleges are meeting this requirement. We don’t think including this requirement will create addition burdens for the vast majority of schools, as they are already doing this, but we are keen to test this assumption.”

Consultation:  paragraph 75 on page 22 introduces this guidance section and ends with a link to “Buying advice for schools.” “Governing bodies and proprietors should be confident that systems are in place that will identify children accessing or trying to access harmful and inappropriate content online. Guidance on e-security is available from the National Education Network.

Guidance: para 78 “Whilst it is essential that governing bodies and proprietors ensure that appropriate filters and monitoring systems are in place they should be careful  that “over blocking” does not lead to unreasonable restrictions as to what children can be taught with regards to online teaching  and safeguarding.” —

Consultation: “The Opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and  “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities. This is an important topic and the assumption is the vast majority of governing bodies and proprietors will already be ensuring the children in their school are suitably equipped with regards to safeguarding. But we are keen to hear views as to the change in emphasis.”

Paragraph 88 on p24  is oddly phrased: “Governing bodies and proprietors should ensure that staff members do not agree confidentiality and always act in the best interests of the child.”

What if confidentiality may sometimes be in the best interests of the child? What would that mean in practice?

 

Keeping Children Safe in Education – Questions on the Consultation and Use in practice

The consultation [2] is open until February 16th, and includes a new requirement to have web filtering and monitoring systems.

Remembering that 85% of children’s waking hours are spent outside school, and in a wide range of schools our children aged 2 -19, not every moment is spent unsupervised and on-screen, is it appropriate that this 24/7 monitoring would be applied to all types of school?

This provider software is reportedly being used in nearly 1,400 secondary schools in the UK.  We hear little about its applied use.

The cases of cyber bullying or sexting in schools I hear of locally, or read in the press, are through smartphones. Unless the school snoops on individual devices I wonder therefore if the cost, implementation and impact is proportionate to the benefit?

  1. Necessary and proportionate? How does this type of monitoring compare with other alternatives?
  2. Privacy impact assessment? Has any been done – surely required as a minimum measure?
  3. Cost benefit risk assessment of the new guidance in practice?
  4. Problem vs Solution: What problem is it trying to solve and how will they measure if it is successful, or stop its use if it is not?  Are other methods on offer?
  5. Due diligence: how do parents know that the providers have undergone thorough vetting and understand who they are? After all, these providers have access to millions of our children’s  online interactions.
  6. Evidence: If it has been used for years in school, how has it been assessed against other methods of supervision?
  7. The national cash cost: this must be enormous when added up for every school in the country, how is cost balanced against risk?
  8. Intangible costs – has anyone asked our children’s feeling on this? Where is the boundary between what is constructive and creepy? Is scope change documented if they decide to collect more data?

Are we Creating a Solution that Solves or creates a Problem?

The private providers would have no incentive to say their reports don’t work and schools, legally required to be risk averse, would be unlikely to say stop if there is no outcome at all.

Some providers  include “review of all incidents by child protection and forensic experts; freeing up time for teachers to focus on intervention” and “trends such as top users can be viewed.” How involved are staff who know the child as a first point of information sharing?

Most tools are multipurposed and I understand the reasons given behind them, but how it is implemented concerns me.

If the extent of these issues really justify this mass monitoring in every school – what are we doing to fix the causes, not simply spy on every child’s every online action in school? (I look at how it extends outside in part two.)

Questions on Public engagement: How are children and families involved in the implementation and with what oversight?

  1. Privacy and consent: Has anyone asked pupils and parents what they think and what rights they have to say no to sharing data?
  2. Involvement: Are parents to be involved and informed in software purchasing and in all data sharing decisions at local or regional level? Is there consistency of message if providers vary?
  3. Transparency: Where are the data created through the child’s actions stored, and for how long? Who has access to the data? What actions may result from it? And with what oversight?
  4. Understanding: How will children and parents be told what is “harmful and inappropriate content” as loosely defined by the consultation, and what they may or may not research? Children’s slang changes often, and “safeguarding” terms are subjective.
  5. Recourse: Will it include assessment of unintended consequences from misinterpretation of information gathered?
  6. Consent: And can I opt my child out from data collection by these unknown and ‘faceless’ third parties?

If children and parents are told their web use is monitored, what chilling effect may that have on their trust of the system, of teaching staff, and their ability to look for content to support their own sensitive concerns or development  that they may not be able to safe to look for at home? What limitation will that put on their creativity?

These are all questions that should be asked to thoroughly understand the consultation and requires wide public examination.

Since key logging is already common practice (according to provider websites) and will effectively in practice become statutory, where is the public discussion? If it’s not explicitly statutory, should pupils be subject to spying on their web searches in a postcode lottery?

What exactly might this part of the new guidance mean for pupils?

In part two, I include the other part of her speech, the GPS app and ask whether if we track every child in and outside school, are we moving closer to the digital dream, or nightmare, in the search to close the digital skills gap?

****

References:

[1] Nicky Morgan’s full speech at BETT

[2] Consultation: Keeping Children Safe in Education – closing Feb 16thThe “opportunities to teach safeguarding” section (para 77-78) has been updated and now says governing bodies and proprieties “should ensure” rather than “should consider” that children are taught about safeguarding, including online, through teaching and learning opportunities.

The Consultation Guidance: most relevant paragraphs 75 and 77 p 22

“Governing bodies and proprietors should be confident that systems are in place that will identify children accessing or trying to access harmful and inappropriate content online. [Proposed statutory guidance]

Since “guidance on procuring appropriate ICT” from the National Education Network NEN* is offered, it is clearly intended that this ‘system’ to be ‘in place’, should be computer based. How will it be applied in practice? A number of the software providers for schools already provide services that include key logging, using “keyword detection libraries” that “provides a complete log of all online activity”.

(*It’s hard to read more about as many of NEN’s links are dead.)  

Ethics, standards and digital rights – time for a citizens’ charter

Central to future data sharing [1] plans is the principle of public interest, intended to be underpinned by transparency in all parts of the process, to be supported by an informed public.  Three principles that are also key in the plan for open policy.

The draft ethics proposals [2] start with user need (i.e. what government wants, researchers want, the users of the data) and public benefit.

With these principles in mind I wonder how compatible the plans are in practice, plans that will remove the citizen from some of the decision making about information sharing from the citizen; that is, you and me.

When talking about data sharing it is all too easy to forget we are talking about people, and in this case, 62 million individual people’s personal information, especially when users of data focus on how data are released or published. The public thinks in terms of personal data as info related to them. And the ICO says, privacy and an individual’s rights are engaged at the point of collection.

The trusted handling, use and re-use of population-wide personal data sharing and ID assurance are vital to innovation and digital strategy. So in order to make these data uses secure and trusted, fit for the 21st century, when will the bad bits of current government datasharing policy and practice [3] be replaced by good parts of ethical plans?

Current practice and Future Proofing Plans

How is policy being future proofed at a time of changes to regulation in the new EUDP which are being made in parallel? Changes that clarify consent and the individual, requiring clear affirmative action by the data subject. [4]  How do public bodies and departments plan to meet the current moral and legal obligation to ensure persons whose personal data are subject to transfer and processing between two public administrative bodies must be informed in advance?

How is public perception [5] being taken into account?

And how are digital identities to be protected when they are literally our passport to the world, and their integrity is vital to maintain, especially for our children in the world of big data [6] we cannot imagine today? How do we verify identity but not have to reveal the data behind it, if those data are to be used in ever more government transactions – done badly that could mean the citizen loses sight of who knows what information and who it has been re-shared with.

From the 6th January there are lots of open questions, no formal policy document or draft legislation to review. It appears to be far off being ready for public consultation, needing concrete input on practical aspects of what the change would mean in practice.

Changing the approach to the collection of citizens’ personal data and removing the need for consent to wide re-use and onward sharing, will open up a massive change to the data infrastructure of the country in terms of who is involved in administrative roles in the process and when. As a country to date we have not included data as part of our infrastructure. Some suggest we should. To change the construction of roads would require impact planning, mapping and thought out budget before beginning the project to assess its impact. An assessment this data infrastructure change appears to be missing entirely.

I’ve considered the plans in terms of case studies of policy and practice, transparency and trust, the issues of data quality and completeness and digital inclusion.

But I’m starting by sharing only my thoughts on ethics.

Ethics, standards and digital rights – time for a public charter

How do you want your own, or your children’s personal data handled?

This is not theoretical. Every one of us in the UK has our own confidential data used in a number of ways about which we are not aware today. Are you OK with that? With academic researchers? With GCHQ? [7] What about charities? Or Fleet Street press? All of these bodies have personal data from population wide datasets and that means all of us or all of our children, whether or not we are the subjects of research, subject to investigation, or just an ordinary citizen minding their own business.

On balance, where do you draw the line between your own individual rights and public good? What is fair use without consent and where would you be surprised and want to be informed?
I would like to hear more about how others feel about and weigh the risks and benefits trade off in this area.

Some organisations on debt have concern about digital exclusion. Others about compiling single view data in coercive relationships. Some organisations are campaigning for a digital bill of rights. I had some thoughts on this specifically for health data in the past.

A charter of digital standards and ethics could be enabling, not a barrier and should be a tool that must come to consultation before new legislation.

Discussing datasharing that will open up every public data set “across every public body” without first having defined a clear policy is a challenge. Without defining its ethical good practice first as a reference framework, it’s dancing in the dark. This draft plan is running in parallel but not part of the datasharing discussion.
Ethical practice and principles must be the foundation of data sharing plans, not an after thought.

Why? Because this stuff is hard. The kinds of research that use sensitive de-identified data are sometimes controversial and will become more challenging as the capabilities of what is possible increase with machine learning, genomics, and increased personalisation and targeting of marketing, and interventions.

The ADRN had spent months on its ethical framework and privacy impact assessment, before I joined the panel.

What does Ethics look like in sharing bulk datasets?

What do you think about the commercialisation of genomic data by the state – often from children whose parents are desperate for a diagnosis – to ‘kick start’ the UK genomics industry?  What do you think about data used in research on domestic violence and child protection? And in predictive policing?

Or research on religious affiliations and home schooling? Or abortion and births in teens matching school records to health data?

Will the results of the research encourage policy change or interventions with any group of people? Could these types of research have unintended consequences or be used in ways researchers did not foresee supporting not social benefit but a particular political or scientific objective? If so, how is that governed?

What research is done today, what is good practice, what is cautious and what would Joe Public expect? On domestic violence for example, public feedback said no.

And while there’s also a risk of not making the best use of data, there are also risks of releasing even anonymised data [8] in today’s world in which jigsawing together the pieces of poorly anonymised data means it is identifying. Profiling or pigeonholing individuals or areas was a concern raised in public engagement work.

The Bean Report used to draw out some of the reasoning behind needs for increased access to data: “Remove obstacles to the greater use of public sector administrative data for statistical purposes, including through changes to the associated legal framework, while ensuring appropriate ethical safeguards are in place and privacy is protected.”

The Report doesn’t outline how the appropriate ethical safeguards are in place and privacy is protected. Or what ethical looks like.

In the Public interest is not clear cut.

The boundary between public and private interest shift in time as well as culture. While in the UK the law today says we all have the right to be treated as equals, regardless of our gender, identity or sexuality it has not always been so.

By putting the rights of the individual on a lower par than the public interest in this change, we risk jeopardising having any data at all to use. But data will be central to the digital future strategy we are told the government wants to “show the rest of the world how it’s done.”

If they’re serious, if all our future citizens must have a digital identity to use with government with any integrity, then the use of not only our current adult, but our children’s data really matters – and current practices must change.  Here’s a case study why:

Pupil data: The Poster Child of Datasharing Bad Practice

Right now, the National Pupil database containing our 8 million or more children’s personal data in England is unfortunately the poster child of what a change in legislation and policy around data sharing, can mean in practice.  Bad practice.

The “identity of a pupil will not be discovered using anonymised data in isolation”, says the User Guide, but when they give away named data, and identifiable data in all but 11 requests since 2012, it’s not anonymised. Anything but the ‘anonymised data’ of publicly announced plans presented in 2011, yet precisely what the change in law to broaden the range of users in the Prescribed Persons Act 2009 permitted , and the expansion of purposes in the amended Education (Individual Pupil Information)(Prescribed Persons) Regulations introduced in June 2013.  It was opened up to:

“(d)persons who, for the purpose of promoting the education or well-being of children in England are—

(i)conducting research or analysis,

(ii)producing statistics, or

(iii)providing information, advice or guidance,

and who require individual pupil information for that purpose(5);”.

The law was changed so that, individual pupil level data, and pupil names are extracted, stored and have also been released at national level. Raw data sent to commercial third parties, charities and press in identifiable individual level and often sensitive data items.

This is a world away from safe setting, statistical analysis of de-identified data by accredited researchers, in the public interest.

Now our children’s confidential data sit on servers on Fleet Street – is this the model for all our personal administrative data in future?

If not, how do we ensure it is not? How will the new all-datasets’ datasharing legislation permit wider sharing with more people than currently have access and not end up with all our identifiable data sent ‘into the wild’ without audit as our pupil data are today?

Consultation, transparency, oversight and public involvement in ongoing data decision making are key, and  well written legislation.

The public interest alone, is not a strong enough description to keep data safe. This same government brought in this National Pupil Database policy thinking it too was ‘in the public interest’ after all.

We need a charter of ethics and digital rights that focuses on the person, not exclusively the public interest use of data.

They are not mutually exclusive, but enhance one another.

Getting ethics in the right place

These ethical principles start in the wrong place. To me, this is not an ethical framework, it’s a ‘how-to-do-data-sharing’ guideline and try to avoid repeating care.data. Ethics is not first about the public interest, or economic good, or government interest. Instead, referencing an ethics council view, you start with the person.

“The terms of any data initiative must take into account both private and public interests. Enabling those with relevant interests to have a say in how their data are used and telling them how they are, in fact, used is a way in which data initiatives can demonstrate respect for persons.”

Professor Michael Parker, Member of the Nuffield Council on Bioethics Working Party and Professor of Bioethics and Director of the Ethox Centre, University of Oxford:

“Compliance with the law is not enough to guarantee that a particular use of data is morally acceptable – clearly not everything that can be done should be done. Whilst there can be no one-size-fits-all solution, people should have say in how their data are used, by whom and for what purposes, so that the terms of any project respect the preferences and expectations of all involved.”

The  partnership between members of the public and public administration must be consensual to continue to enjoy support. [10]. If personal data are used for research or other uses, in the public interest, without explicit consent, it should be understood as a privilege by those using the data, not a right.

As such, we need to see data as about the person, as they see it themselves, and data at the point of collection as information about individual people, not just think of statistics. Personal data are sensitive, and some research uses highly sensitive,  and data used badly can do harm. Designing new patterns of datasharing must think of the private, as well as public interest,  co-operating for the public good.

And we need a strong ethical framework to shape that in.

******

[1] http://datasharing.org.uk/2016/01/13/data-sharing-workshop-i-6-january-2016-meeting-note/

[2] Draft data science ethical framework: https://data.blog.gov.uk/wp-content/uploads/sites/164/2015/12/Data-science-ethics-short-for-blog-1.pdf

[3] defenddigitalme campaign to get pupil data in England made safe http://defenddigitalme.com/

[4] On the European Data Protection regulations: https://www.privacyandsecuritymatters.com/2015/12/the-general-data-protection-regulation-in-bullet-points/

[5] Public engagament work – ADRN/ESRC/ Ipsos MORI 2014 https://adrn.ac.uk/media/1245/sri-dialogue-on-data-2014.pdf

[6] Written evidence submitted to the parliamentary committee on big data: http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/science-and-technology-committee/big-data-dilemma/written/25380.pdf

[7] http://www.bbc.co.uk/news/uk-politics-35300671 Theresa May affirmed bulk datasets use at the IP Bill committee hearing and did not deny use of bulk personal datasets, including medical records

[8] http://www.economist.com/news/science-and-technology/21660966-can-big-databases-be-kept-both-anonymous-and-useful-well-see-you-anon

[9] Nuffield Council on Bioethics http://nuffieldbioethics.org/report/collection-linking-use-data-biomedical-research-health-care/ethical-governance-of-data-initiatives/

[10] Royal Statistical Society –  the data trust deficit https://www.ipsos-mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx

Background: Why datasharing matters to me:

When I joined the data sharing discussions that have been running for almost 2 years only very recently, it was wearing two hats, both in a personal capacity.

The first was with interest in how any public policy and legislation may be changing and will affect deidentified datasharing for academic research, as I am one of two lay people, offering public voice on the ADRN approvals panel.

Its aim is to makes sure the process of granting access to the use of sensitive, linked administrative data from population-wide datasets is fair, equitable and transparent, for de-identified use by trusted researchers, for non-commercial use, under strict controls and in safe settings. Once a research project is complete, the data are securely destroyed. It’s not doing work that “a government department or agency would carry out as part of its normal operations.”

Wearing my second hat, I am interested to see how new policy and practice plan to affect current practice. I coordinate the campaign efforts with the Department for Education to stop giving away the identifiable, confidential and sensitive personal data of our 8m children in England to commercial third parties and press from the National Pupil Database.