#caredata, care.data, change, choice, confidentiality, datasharing, empowerment, ethics, HSCIC, National Pupil Database, NHS England, trust

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 One–Way Mirror: Public attitudes to commercial access to health data

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

choice, privacy, Tech, transparency, trust

Gotta know it all? Pokémon GO, privacy and behavioural research

I caught my first Pokémon and I liked it. Well, OK, someone else handed me a phone and insisted I have a go. Turns out my curve ball is pretty good. Pokémon GO is enabling all sorts of new discoveries.

Discoveries reportedly including a dead man, robbery, picking up new friends, and scrapes and bruises. While players are out hunting anime in augmented reality, enjoying the novelty, and discovering interesting fun facts about their vicinity, Pokémon GO is gathering a lot of data. It’s influencing human activity in ways that other games can only envy, taking in-game interaction to a whole new level.

And it’s popular.

But what is it learning about us as we do it?

This week questions have been asked about the depth of interaction that the app gets by accessing users’ log in credentials.

What I would like to know is what access goes in the other direction?

Google, heavily invested in AI and Machine intelligence research, has “learning systems placed at the core of interactive services in a fast changing and sometimes adversarial environment, combinations of techniques including deep learning and statistical models need to be combined with ideas from control and game theory.”

The app, which is free to download, has raised concerns over suggestions the app could access a user’s entire Google account, including email and passwords. Then it seemed it couldn’t. But Niantic is reported to have made changes to permissions to limit access to basic profile information anyway.

If Niantic gets access to data owned by Google through its use of google log in credentials, does Nantic’s investor, Google’s Alphabet, get the reverse: user data from the Google log in interaction with the app, and if so, what does Google learn through the interaction?

Who gets access to what data and why?

Brian Crecente writes that Apple, Google, Niantic likely making more on Pokémon Go than Nintendo, with 30 percent of revenue from in-app purchases on their online stores.

Next stop  is to make money from marketing deals between Niantic and the offline stores used as in-game focal points, gyms and more, according to Bryan Menegus at Gizmodo who reported Redditors had discovered decompiled code in the Android and iOS versions of Pokémon Go earlier this week “that indicated a potential sponsorship deal with global burger chain McDonald’s.”

The logical progressions of this, is that the offline store partners, i.e. McDonald’s and friends, will be making money from players, the people who get led to their shops, restaurants and cafes where players will hang out longer than the Pokéstop, because the human interaction with other humans, the battles between your collected creatures and teamwork, are at the heart of the game. Since you can’t visit gyms until you are level 5 and have chosen a team, players are building up profiles over time and getting social in real life. Location data that may build up patterns about the players.

This evening the two players that I spoke to were already real-life friends on their way home from work (that now takes at least an hour longer every evening) and they’re finding the real-life location facts quite fun, including that thing they pass on the bus every day, and umm, the Scientology centre. Well, more about that later**.

Every player I spotted looking at the phone with that finger flick action gave themselves away with shared wry smiles. All 30 something men. There is possibly something of a legacy in this they said, since the initial Pokémon game released 20 years ago is drawing players who were tweens then.

Since the app is online and open to all, children can play too. What this might mean for them in the offline world, is something the NSPCC picked up on here before the UK launch. Its focus  of concern is the physical safety of young players, citing the risk of in-game lures misuse. I am not sure how much of an increased risk this is compared with existing scenarios and if children will be increasingly unsupervised or not. It’s not a totally new concept. Players of all ages must be mindful of where they are playing**. Some stories of people getting together in the small hours of the night has generated some stories which for now are mostly fun. (Go Red Team.) Others are worried about hacking. And it raises all sorts of questions if private and public space is has become a Pokestop.

While the NSPCC includes considerations on the approach to privacy in a recent more general review of apps, it hasn’t yet mentioned the less obvious considerations of privacy and ethics in Pokémon GO. Encouraging anyone, but particularly children, out of their home or protected environments and into commercial settings with the explicit aim of targeting their spending. This is big business.

Privacy in Pokémon GO

I think we are yet to see a really transparent discussion of the broader privacy implications of the game because the combination of multiple privacy policies involved is less than transparent. They are long, they seem complete, but are they meaningful?

We can’t see how they interact.

Google has crowd sourced the collection of real time traffic data via mobile phones.  Geolocation data from google maps using GPS data, as well as network provider data seem necessary to display the street data to players. Apparently you can download and use the maps offline since Pokémon GO uses the Google Maps API. Google goes to “great lengths to make sure that imagery is useful, and reflects the world our users explore.” In building a Google virtual reality copy of the real world, how data are also collected and will be used about all of us who live in it,  is a little wooly to the public.

U.S. Senator Al Franken is apparently already asking Niantic these questions. He points out that Pokémon GO has indicated it shares de-identified and aggregate data with other third parties for a multitude of purposes but does not describe the purposes for which Pokémon GO would share or sell those data [c].

It’s widely recognised that anonymisation in many cases fails so passing only anonymised data may be reassuring but fail in reality. Stripping out what are considered individual personal identifiers in terms of data protection, can leave individuals with unique characteristics or people profiled as groups.

Opt out he feels is inadequate as a consent model for the personal and geolocational data that the app is collecting and passing to others in the U.S.

While the app provider would I’m sure argue that the UK privacy model respects the European opt in requirement, I would be surprised if many have read it. Privacy policies fail.

Poor practices must be challenged if we are to preserve the integrity of controlling the use of our data and knowledge about ourselves. Being aware of who we have ceded control of marketing to us, or influencing how we might be interacting with our environment, is at least a step towards not blindly giving up control of free choice.

The Pokémon GO permissions “for the purpose of performing services on our behalf“, “third party service providers to work with us to administer and provide the Services” and  “also use location information to improve and personalize our Services for you (or your authorized child)” are so broad as they could mean almost anything. They can also be changed without any notice period. It’s therefore pretty meaningless. But it’s the third parties’ connection, data collection in passing, that is completely hidden from players.

If we are ever to use privacy policies as meaningful tools to enable consent, then they must be transparent to show how a chain of permissions between companies connect their services.

Otherwise they are no more than get out of jail free cards for the companies that trade our data behind the scenes, if we were ever to claim for its misuse.  Data collectors must improve transparency.

Behavioural tracking and trust

Covert data collection and interaction is not conducive to user trust, whether through a failure to communicate by design or not.

By combining location data and behavioural data, measuring footfall is described as “the holy grail for retailers and landlords alike” and it is valuable.  “Pavement Opportunity” data may be sent anonymously, but if its analysis and storage provides ways to pitch to people, even if not knowing who they are individually, or to groups of people, it is discriminatory and potentially invisibly predatory. The pedestrian, or the player, Jo Public, is a commercial opportunity.

Pokémon GO has potential to connect the opportunity for profit makers with our pockets like never before. But they’re not alone.

Who else is getting our location data that we don’t sign up for sharing “in 81 towns and cities across Great Britain“?

Whether footfall outside the shops or packaged as a game that gets us inside them, public interest researchers and commercial companies alike both risk losing our trust if we feel used as pieces in a game that we didn’t knowingly sign up to. It’s creepy.

For children the ethical implications are even greater.

There are obligations to meet higher legal and ethical standards when processing children’s data and presenting them marketing. Parental consent requirements fail children for a range of reasons.

So far, the UK has said it will implement the EU GDPR. Clear and affirmative consent is needed. Parental consent will be required for the processing of personal data of children under age 16. EU Member States may lower the age requiring parental consent to 13, so what that will mean for children here in the UK is unknown.

The ethics of product placement and marketing rules to children of all ages go out the window however, when the whole game or programme is one long animated advert. On children’s television and YouTube, content producers have turned brand product placement into programmes: My Little Pony, Barbie, Playmobil and many more.

Alice Webb, Director of BBC Children’s and BBC North,  looked at some of the challenges in this as the BBC considers how to deliver content for children whilst adapting to technological advances in this LSE blog and the publication of a new policy brief about families and ‘screen time’, by Alicia Blum-Ross and Sonia Livingstone.

So is this augmented reality any different from other platforms?

Yes because you can’t play the game without accepting the use of the maps and by default some sacrifice of your privacy settings.

Yes because the ethics and implications of of putting kids not simply in front of a screen that pitches products to them, but puts them physically into the place where they can consume products – if the McDonalds story is correct and a taster of what will follow – is huge.

Boundaries between platforms and people

Blum-Ross says, “To young people, the boundaries and distinctions that have traditionally been established between genres, platforms and devices mean nothing; ditto the reasoning behind the watershed system with its roots in decisions about suitability of content. “

She’s right. And if those boundaries and distinctions mean nothing to providers, then we must have that honest conversation with urgency. With our contrived consent, walking and running and driving without coercion, we are being packaged up and delivered right to the door of for-profit firms, paying for the game with our privacy. Smart cities are exploiting street sensors to do the same.

Freewill is at the very heart of who we are. “The ability to choose between different possible courses of action. It is closely linked to the concepts of responsibility, praise, guilt, sin, and other judgments which apply only to actions that are freely chosen.” Free choice of where we shop, what we buy and who we interact with is open to influence. Influence that is not entirely transparent presents opportunity for hidden manipulation, while the NSPCC might be worried about the risk of rare physical threat, the potential for the influencing of all children’s behaviour, both positive and negative, reaches everyone.

Some stories of how behaviour is affected, are heartbreakingly positive. And I met and chatted with complete strangers who shared the joy of something new and a mutual curiosity of the game. Pokémon GOis clearly a lot of fun. It’s also unclear on much more.

I would like to explicitly understand if Pokémon GO is gift packaging behavioural research by piggybacking on the Google platforms that underpin it, and providing linked data to Google or third parties.

Fishing for frequent Pokémon encourages players to ‘check in’ and keep that behaviour tracking live. 4pm caught a Krabby in the closet at work. 6pm another Krabby. Yup, still at work. 6.32pm Pidgey on the street outside ThatGreenCoffeeShop. Monday to Friday.

The Google privacy policies changed in the last year require ten clicks for opt out, and in part, the download of an add-on. Google has our contacts, calendar events, web searches, health data, has invested in our genetics, and all the ‘Things that make you “you”. They have our history, and are collecting our present. Machine intelligence work on prediction, is the future. For now, perhaps that will be pinging you with a ‘buy one get one free’ voucher at 6.20, or LCD adverts shifting as you drive back home.

Pokémon GO doesn’t have to include what data Google collects in its privacy policy. It’s in Google’s privacy policy. And who really read that when it came out months ago, or knows what it means in combination with new apps and games we connect it with today? Tracking and linking data on geolocation, behavioural patterns, footfall, whose other phones are close by,  who we contact, and potentially even our spend from Google wallet.

Have Google and friends of Niantic gotta know it all?

comm consent, communications, confidentiality, consent, datasharing, engagement, ethics, politics, privacy, research, surveillance, Tech, transparency, trust

The illusion that might cheat us: ethical data science vision and practice

This blog post is also available as an audio file on soundcloud.

Anais Nin, wrote in her 1946 diary of the dangers she saw in the growth of technology to expand our potential for connectivity through machines, but diminish our genuine connectedness as people. She could hardly have been more contemporary for today:

“This is the illusion that might cheat us of being in touch deeply with the one breathing next to us. The dangerous time when mechanical voices, radios, telephone, take the place of human intimacies, and the concept of being in touch with millions brings a greater and greater poverty in intimacy and human vision.” [Extract from volume IV 1944-1947]

Echoes from over 70 years ago, can be heard in the more recent comments of entrepreneur Elon Musk. Both are concerned with simulation, a lack of connection between the perceived, and reality, and the jeopardy this presents for humanity. But both also have a dream. A dream based on the positive potential society has.

How will we use our potential?

Data is the connection we all have between us as humans and what machines and their masters know about us. The values that masters underpin their machine design with, will determine the effect the machines and knowledge they deliver, have on society.

In seeking ever greater personalisation, a wider dragnet of data is putting together ever more detailed pieces of information about an individual person. At the same time data science is becoming ever more impersonal in how we treat people as individuals. We risk losing sight of how we respect and treat the very people whom the work should benefit.

Nin grasped the risk that a wider reach, can mean more superficial depth. Facebook might be a model today for the large circle of friends you might gather, but how few you trust with confidences, with personal knowledge about your own personal life, and the privilege it is when someone chooses to entrust that knowledge to you. Machine data mining increasingly tries to get an understanding of depth, and may also add new layers of meaning through profiling, comparing our characteristics with others in risk stratification.
Data science, research using data, is often talked about as if it is something separate from using information from individual people. Yet it is all about exploiting those confidences.

Today as the reach has grown in what is possible for a few people in institutions to gather about most people in the public, whether in scientific research, or in surveillance of different kinds, we hear experts repeatedly talk of the risk of losing the valuable part, the knowledge, the insights that benefit us as society if we can act upon them.

We might know more, but do we know any better? To use a well known quote from her contemporary, T S Eliot, ‘Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?’

What can humans achieve? We don’t yet know our own limits. What don’t we yet know?  We have future priorities we aren’t yet aware of.

To be able to explore the best of what Nin saw as ‘human vision’ and Musk sees in technology, the benefits we have from our connectivity; our collaboration, shared learning; need to be driven with an element of humility, accepting values that shape  boundaries of what we should do, while constantly evolving with what we could do.

The essence of this applied risk is that technology could harm you, more than it helps you. How do we avoid this and develop instead the best of what human vision makes possible? Can we also exceed our own expectations of today, to advance in moral progress?

Continue reading The illusion that might cheat us: ethical data science vision and practice →

care.data, change management, communications, engagement, ethics, genomics, health, human rights, politics, privacy, research, transparency, trust

OkCupid and Google DeepMind: Happily ever after? Purposes and ethics in datasharing

This blog post is also available as an audio file on soundcloud.

What constitutes the public interest must be set in a universally fair and transparent ethics framework if the benefits of research are to be realised – whether in social science, health, education and more – that framework will provide a strategy to getting the pre-requisite success factors right, ensuring research in the public interest is not only fit for the future, but thrives. There has been a climate change in consent. We need to stop talking about barriers that prevent datasharing  and start talking about the boundaries within which we can.

What is the purpose for which I provide my personal data?

‘We use math to get you dates’, says OkCupid’s tagline.

That’s the purpose of the site. It’s the reason people log in and create a profile, enter their personal data and post it online for others who are looking for dates to see. The purpose, is to get a date.

When over 68K OkCupid users registered for the site to find dates, they didn’t sign up to have their identifiable data used and published in ‘a very large dataset’ and onwardly re-used by anyone with unregistered access. The users data were extracted “without the express prior consent of the user […].”

Are the registration consent purposes compatible with the purposes to which the researcher put the data should be a simple enough question.  Are the research purposes what the person signed up to, or would they be surprised to find out their data were used like this?

Questions the “OkCupid data snatcher”, now self-confessed ‘non-academic’ researcher, thought unimportant to consider.

But it appears in the last month, he has been in good company.

Google DeepMind, and the Royal Free, big players who do know how to handle data and consent well, paid too little attention to the very same question of purposes.

The boundaries of how the users of OkCupid had chosen to reveal information and to whom, have not been respected in this project.

Nor were these boundaries respected by the Royal Free London trust that gave out patient data for use by Google DeepMind with changing explanations, without clear purposes or permission.

The legal boundaries in these recent stories appear unclear or to have been ignored. The privacy boundaries deemed irrelevant. Regulatory oversight lacking.

The respectful ethical boundaries of consent to purposes, disregarding autonomy, have indisputably broken down, whether by commercial org, public body, or lone ‘researcher’.

Research purposes

The crux of data access decisions is purposes. What question is the research to address – what is the purpose for which the data will be used? The intent by Kirkegaard was to test:

“the relationship of cognitive ability to religious beliefs and political interest/participation…”

In this case the question appears intended rather a test of the data, not the data opened up to answer the test. While methodological studies matter, given the care and attention [or self-stated lack thereof] given to its extraction and any attempt to be representative and fair, it would appear this is not the point of this study either.

The data doesn’t include profiles identified as heterosexual male, because ‘the scraper was’. It is also unknown how many users hide their profiles, “so the 99.7% figure [identifying as binary male or female] should be cautiously interpreted.”

“Furthermore, due to the way we sampled the data from the site, it is not even representative of the users on the site, because users who answered more questions are overrepresented.” [sic]

The paper goes on to say photos were not gathered because they would have taken up a lot of storage space and could be done in a future scraping, and

“other data were not collected because we forgot to include them in the scraper.”

The data are knowingly of poor quality, inaccurate and incomplete. The project cannot be repeated as ‘the scraping tool no longer works’. There is an unclear ethical or peer review process, and the research purpose is at best unclear. We can certainly give someone the benefit of the doubt and say intent appears to have been entirely benevolent. It’s not clear what the intent was. I think it is clearly misplaced and foolish, but not malevolent.

The trouble is, it’s not enough to say, “don’t be evil.” These actions have consequences.

When the researcher asserts in his paper that, “the lack of data sharing probably slows down the progress of science immensely because other researchers would use the data if they could,”  in part he is right.

Google and the Royal Free have tried more eloquently to say the same thing. It’s not research, it’s direct care, in effect, ignore that people are no longer our patients and we’re using historical data without re-consent. We know what we’re doing, we’re the good guys.

However the principles are the same, whether it’s a lone project or global giant. And they’re both wildly wrong as well. More people must take this on board. It’s the reason the public interest needs the Dame Fiona Caldicott review published sooner rather than later.

Just because there is a boundary to data sharing in place, does not mean it is a barrier to be ignored or overcome. Like the registration step to the OkCupid site, consent and the right to opt out of medical research in England and Wales is there for a reason.

We’re desperate to build public trust in UK research right now. So to assert that the lack of data sharing probably slows down the progress of science is misplaced, when it is getting ‘sharing’ wrong, that caused the lack of trust in the first place and harms research.

A climate change in consent

There has been a climate change in public attitude to consent since care.data, clouded by the smoke and mirrors of state surveillance. It cannot be ignored.  The EUGDPR supports it. Researchers may not like change, but there needs to be an according adjustment in expectations and practice.

Without change, there will be no change. Public trust is low. As technology advances and if we continue to see commercial companies get this wrong, we will continue to see public trust falter unless broken things get fixed. Change is possible for the better. But it has to come from companies, institutions, and people within them.

Like climate change, you may deny it if you choose to. But some things are inevitable and unavoidably true.

There is strong support for public interest research but that is not to be taken for granted. Public bodies should defend research from being sunk by commercial misappropriation if they want to future-proof public interest research.

The purpose for which the people gave consent are the boundaries within which you have permission to use data, that gives you freedom within its limits, to use the data.  Purposes and consent are not barriers to be overcome.

If research is to win back public trust developing a future proofed, robust ethical framework for data science must be a priority today.

Commercial companies must overcome the low levels of public trust they have generated in the public to date if they ask ‘trust us because we’re not evil‘. If you can’t rule out the use of data for other purposes, it’s not helping. If you delay independent oversight it’s not helping.

This case study and indeed the Google DeepMind recent episode by contrast demonstrate the urgency with which working out what common expectations and oversight of applied ethics in research, who gets to decide what is ‘in the public interest’ and data science public engagement must be made a priority, in the UK and beyond.

Boundaries in the best interest of the subject and the user

Society needs research in the public interest. We need good decisions made on what will be funded and what will not be. What will influence public policy and where needs attention for change.

To do this ethically, we all need to agree what is fair use of personal data, when is it closed and when is it open, what is direct and what are secondary uses, and how advances in technology are used when they present both opportunities for benefit or risks to harm to individuals, to society and to research as a whole.

The potential benefits of research are potentially being compromised for the sake of arrogance, greed, or misjudgement, no matter intent. Those benefits cannot come at any cost, or disregard public concern, or the price will be trust in all research itself.

In discussing this with social science and medical researchers, I realise not everyone agrees. For some, using deidentified data in trusted third party settings poses such a low privacy risk, that they feel the public should have no say in whether their data are used in research as long it’s ‘in the public interest’.

For the DeepMind researchers and Royal Free, they were confident even using identifiable data, this is the “right” thing to do, without consent.

For the Cabinet Office datasharing consultation, the parts that will open up national registries, share identifiable data more widely and with commercial companies, they are convinced it is all the “right” thing to do, without consent.

How can researchers, society and government understand what is good ethics of data science, as technology permits ever more invasive or covert data mining and the current approach is desperately outdated?

Who decides where those boundaries lie?

“It’s research Jim, but not as we know it.” This is one aspect of data use that ethical reviewers will need to deal with, as we advance the debate on data science in the UK. Whether independents or commercial organisations. Google said their work was not research. Is‘OkCupid’ research?

If this research and data publication proves anything at all, and can offer lessons to learn from, it is perhaps these three things:

Who is accredited as a researcher or ‘prescribed person’ matters. If we are considering new datasharing legislation, and for example, who the UK government is granting access to millions of children’s personal data today. Your idea of a ‘prescribed person’ may not be the same as the rest of the public’s.

Researchers and ethics committees need to adjust to the climate change of public consent. Purposes must be respected in research particularly when sharing sensitive, identifiable data, and there should be no assumptions made that differ from the original purposes when users give consent.

Data ethics and laws are desperately behind data science technology. Governments, institutions, civil, and all society needs to reach a common vision and leadership how to manage these challenges. Who defines these boundaries that matter?

How do we move forward towards better use of data?

Our data and technology are taking on a life of their own, in space which is another frontier, and in time, as data gathered in the past might be used for quite different purposes today.

The public are being left behind in the game-changing decisions made by those who deem they know best about the world we want to live in. We need a say in what shape society wants that to take, particularly for our children as it is their future we are deciding now.

How about an ethical framework for datasharing that supports a transparent public interest, which tries to build a little kinder, less discriminating, more just world, where hope is stronger than fear?

Working with people, with consent, with public support and transparent oversight shouldn’t be too much to ask. Perhaps it is naive, but I believe that with an independent ethical driver behind good decision-making, we could get closer to datasharing like that.

That would bring Better use of data in government.

Purposes and consent are not barriers to be overcome. Within these, shaped by a strong ethical framework, good data sharing practices can tackle some of the real challenges that hinder ‘good use of data’: training, understanding data protection law, communications, accountability and intra-organisational trust. More data sharing alone won’t fix these structural weaknesses in current UK datasharing which are our really tough barriers to good practice.

How our public data will be used in the public interest will not be a destination or have a well defined happy ending, but it is a long term  process which needs to be consensual and there needs to be a clear path to setting out together and achieving collaborative solutions.

While we are all different, I believe that society shares for the most part, commonalities in what we accept as good, and fair, and what we believe is important. The family sitting next to me have just counted out their money and bought an ice cream to share, and the staff gave them two. The little girl is beaming. It seems that even when things are difficult, there is always hope things can be better. And there is always love.

Even if some might give it a bad name.

********

img credit: flickr/sofi01/ Beauty and The Beast  under creative commons

care.data, change management, communications, consent, engagement, genomics, National Pupil Database, privacy, transparency

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.

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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/

care.data, change management, commercial, engagement, human rights, scope, Tech, transparency

A data sharing fairytale (3): transformation and impact

Part three: It is vital that the data sharing consultation is not seen in a silo, or even a set of silos each particular to its own stakeholder. To do it justice and ensure the questions that should be asked are answered, we must look instead at the whole story and the background setting. And we must ask each stakeholder, what does your happy ending look like?

Parts one and two to follow address public engagement and ethics, this focuses on current national data practice, tailored public services, and local impact of the change and transformation that will result.

What is your happy ending?

This data sharing consultation is gradually revealing to me how disjoined government appears in practice and strategy. Our digital future, a society that is more inclusive and more just, supported by better uses of technology and data in ‘dot everyone’ will not happen if they cannot first join the dots across all of Cabinet thinking and good practice, and align policies that are out of step with each other.

Last Thursday night’s “Government as a Platform Future” panel discussion (#GaaPFuture) took me back to memories of my old job, working in business implementations of process and cutting edge systems. Our finest hour was showing leadership why success would depend on neither. Success was down to local change management and communications, because change is about people, not the tech.

People in this data sharing consultation, means the public, means the staff of local government public bodies, as well as the people working at national stakeholders of the UKSA (statistics strand), ADRN (de-identified research strand), Home Office (GRO strand), DWP (Fraud and Debt strands), and DECC (energy) and staff at the national driver, the Cabinet Office.

I’ve attended two of the 2016 datasharing meetings,  and am most interested from three points of view  – because I am directly involved in the de-identified data strand,  campaign for privacy, and believe in public engagement.

Engagement with civil society, after almost 2 years of involvement on three projects, and an almost ten month pause in between, the projects had suddenly become six in 2016, so the most sensitive strands of the datasharing legislation have been the least openly discussed.

At the end of the first 2016 meeting, I asked one question.

How will local change management be handled and the consultation tailored to local organisations’ understanding and expectations of its outcome?

Why? Because a top down data extraction programme from all public services opens up the extraction of personal data as business intelligence to national level, of all local services interactions with citizens’ data.  Or at least, those parts they have collected or may collect in future.

That means a change in how the process works today. Global business intelligence/data extractions are designed to make processes more efficient, through reductions in current delivery, yet concrete public benefits for citizens are hard to see that would be different from today, so why make this change in practice?

What it might mean for example, would be to enable collection of all citizens’ debt information into one place, and that would allow the service to centralise chasing debt and enforce its collection, outsourced to a single national commercial provider.

So what does the future look like from the top? What is the happy ending for each strand, that will be achieved should this legislation be passed?  What will success for each set of plans look like?

What will we stop doing, what will we start doing differently and how will services concretely change from today, the current state, to the future?

Most importantly to understand its implications for citizens and staff, we should ask how will this transformation be managed well to see the benefits we are told it will deliver?

Can we avoid being left holding a pumpkin, after the glitter of ‘use more shiny tech’ and government love affair with the promises of Big Data wear off?

Look into the local future

Those with the vision of the future on a panel at the GDS meeting this week, the new local government model enabled by GaaP, also identified, there are implications for potential loss of local jobs, and “turkeys won’t vote for Christmas”. So who is packaging this change to make it successfully deliverable?

If we can’t be told easily in consultation, then it is not a clear enough policy to deliver. If there is a clear end-state, then we should ask what the applied implications in practice are going to be?

It is vital that the data sharing consultation is not seen in a silo, or even a set of silos each particular to its own stakeholder, about copying datasets to share them more widely, but that we look instead at the whole story and the background setting.

The Tailored Reviews: public bodies guidance suggests massive reform of local government, looking for additional savings, looking to cut back office functions and commercial plans. It asks “What workforce reductions have already been agreed for the body? Is there potential to go further? Are these linked to digital savings referenced earlier?”

Options include ‘abolish, move out of central government, commercial model, bring in-house, merge with another body.’

So where is the local government public bodies engagement with change management plans in the datasharing consultation as a change process? Does it not exist?

I asked at the end of the first datasharing meeting in January and everyone looked a bit blank. A question ‘to take away’ turned into nothing.

Yet to make this work, the buy-in of local public bodies is vital. So why skirt round this issue in local government, if there are plans to address it properly?

If there are none, then with all the data in the world, public services delivery will not be improved, because the issues are friction not of interference by consent, or privacy issues, but working practices.

If the idea is to avoid this ‘friction’ by removing it, then where is the change management plan for public services and our public staff?

Trust depends on transparency

John Pullinger, our National Statistician, this week also said on datasharing we need a social charter on data to develop trust.

Trust can only be built between public and state if the organisations, and all the people in them, are trustworthy.

To implement process change successfully, the people involved in these affected organisations, the staff, must trust that change will mean positive improvement and risks explained.

For the public, what defined levels of data access, privacy protection, and scope limitation that this new consultation will permit in practice, are clearly going to be vital to define if the public will trust its purposes.

The consultation does not do this, and there is no draft code of conduct yet, and no one is willing to define ‘research’ or ‘public interest’.

Public interest models or ‘charter’ for collection and use of research data in health, concluded that ofr ethical purposes, time also mattered. Benefits must be specific, measurable, attainable, relevant and time-bound. So let’s talk about the intended end state that is to be achieved from these changes, and identify how its benefits are to meet those objectives – change without an intended end state will almost never be successful, if you don’t know start knowing what it looks like.

For public trust, that means scope boundaries. Sharing now, with today’s laws and ethics is only fully meaningful if we trust that today’s governance, ethics and safeguards will be changeable in future to the benefit of the citizen, not ever greater powers to the state at the expense of the individual. Where is scope defined?

There is very little information about where limits would be on what data could not be shared, or when it would not be possible to do so without explicit consent. Permissive powers put the onus onto the data controller to share, and given ‘a new law says you should share’ would become the mantra, it is likely to mean less individual accountability. Where are those lines to be drawn to support the staff and public, the data user and the data subject?

So to summarise, so far I have six key questions:

  • What does your happy ending look like for each data strand?
  • How will bad practices which conflict with the current consultation proposals be stopped?
  • How will the ongoing balance of use of data for government purposes, privacy and information rights be decided and by whom?
  • In what context will the ethical principles be shaped today?
  • How will the transformation from the current to that future end state be supported, paid for and delivered?
  • Who will oversee new policies and ensure good data science practices, protection and ethics are applied in practice?

This datasharing consultation is not entirely for something new, but expansion of what is done already. And in some places is done very badly.

How will the old stories and new be reconciled?

Wearing my privacy and public engagement hats, here’s an idea.

Perhaps before the central State starts collecting more, sharing more, and using more of our personal data for ‘tailored public services’ and more, the government should ask for a data amnesty?

It’s time to draw a line under bad practice.  Clear out the ethics drawers of bad historical practice, and start again, with a fresh chapter. Because current practices are not future-proofed and covering them up in the language of ‘better data ethics’ will fail.

The consultation assures us that: “These proposals are not about selling public or personal data, collecting new data from citizens or weakening the Data Protection Act 1998.”

However it does already sell out personal data from at least BIS. How will these contradictory positions across all Departments be resolved?

The left hand gives out de-identified data in safe settings for public benefit research while the right hands out over 10 million records to the Telegraph and The Times without parental or schools’ consent. Only in la-la land are these both considered ethical.

Will somebody at the data sharing meeting please ask, “when will this stop?” It is wrong. These are our individual children’s identifiable personal data. Stop giving them away to press and charities and commercial users without informed consent. It’s ludicrous. Yet it is real.

Policy makers should provide an assurance there are plans for this to change as part of this consultation.

Without it, the consultation line about commercial use, is at best disingenuous, at worst a bare cheeked lie.

“These powers will also ensure we can improve the safe handling of citizen data by bringing consistency and improved safeguards to the way it is handled.”

Will it? Show me how and I might believe it.

Privacy, it was said at the RSS event, is the biggest concern in this consultation:

“includes proposals to expand the use of appropriate and ethical data science techniques to help tailor interventions to the public”

“also to start fixing government’s data infrastructure to better support public services.”

The techniques need outlined what they mean, and practices fixed now, because many stand on shaky legal ground. These privacy issues have come about over cumulative governments of different parties in the last ten years, so the problems are non-partisan, but need practical fixes.

Today, less than transparent international agreements push ‘very far-reaching chapters on the liberalisation of data trading’ while according to the European Court of Justice these practices lack a solid legal basis.

Today our government already gives our children’s personal data to commercial third parties and sells our higher education data without informed consent, while the DfE and BIS both know they fail processing and its potential consequences: the European Court reaffirmed in 2015 “persons whose personal data are subject to transfer and processing between two public administrative bodies must be informed in advance” in Judgment in Case C-201/14.

In a time that actively cultivates universal public fear,  it is time for individuals to be brave and ask the awkward questions because you either solve them up front, or hit the problems later. The child who stood up and said The Emperor has on no clothes, was right.

What’s missing?

The consultation conversation will only be genuine, once the policy makers acknowledge and address solutions regards:

  1. those data practices that are currently unethical and must change
  2. how the tailored public services datasharing legislation will shape the delivery of government services’ infrastructure and staff, as well as the service to the individual in the public.

If we start by understanding what the happy ending looks like, we are much more likely to arrive there, and how to measure success.

The datasharing consultation engagement, the ethics of data science, and impact on data infrastructures as part of ‘government as a platform’ need seen as a whole joined up story if we are each to consider what success for us as stakeholders, looks like.

We need to call out current data failings and things that are missing, to get them fixed.

Without a strong, consistent ethical framework you risk 3 things:

  1. data misuse and loss of public trust
  2. data non-use because your staff don’t trust they’re doing it right
  3. data is becoming a toxic asset

The upcoming meetings should address this and ask practically:

  1. How the codes of conduct, and ethics, are to be shaped, and by whom, if outwith the consultation?
  2. What is planned to manage and pay for the future changes in our data infrastructures;  ie the models of local government delivery?
  3. What is the happy ending that each data strand wants to achieve through this and how will the success criteria be measured?

Public benefit is supposed to be at the heart of this change. For UK statistics, for academic public benefit research, they are clear.

For some of the other strands, local public benefits that outweigh the privacy risks and do not jeopardise public trust seem like magical unicorns dancing in the land far, far away of centralised government; hard to imagine, and even harder to capture.

*****

Part one: A data sharing fairytale: Engagement
Part two: A data sharing fairytale: Ethics
Part three: A data sharing fairytale: Impact (this post)

Tailored public bodies review: Feb 2016

img credit: Hermann Vogel illustration ‘Cinderella’

change management, genomics, health, human rights, politics, privacy, surveillance, Tech, transparency

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.

choice, engagement, human rights, politics, privacy

EU do the Hokey Cokey. In out, In out, shake it all about.

The IN and the OUT circles have formed and Boris is standing in the middle.

Speculation as to whether he means to be on the No team is agreed he doesn’t really mean no.

His comments on staying in have been more consistently in the past pointed to his head saying staying in is better for business.

Some are suggesting that his stance is neither in nor out, but ‘an unconvincing third way‘,  no doesn’t mean no to staying in but no to Cameron’s deal and would in fact mean a second vote along the lines of Dominic Cumming’s .

If so, is this breathtaking arrogance and a u-turn of unforeseeable magnitude? Had our PM not said before the last GE he planned in stepping down before the end of the next Parliament, you could think so. But this way they cannot lose.

This is in fact bloody brilliant positioning by the whole party.

A yes vote underpins Cameron’s re-negotiation as ‘the right thing to do’, best for business and his own statesmanship while showing that we’re not losing sovereignty because staying in is on our terms.

Renegotiating our relationship with the EU was a key Conservative election promise.

This pacifies the majority of that part of the population who wants out of some of the EU ‘controlling out country’ and beholden to EU law, but keeps us stable and financially secure.

The hardline Out campaigners are seen as a bag of all-sorts that few are taking that seriously. But then comes Boris.

So now there is some weight in the out circle and if the country votes ‘No’ a way to manage the outcome with a ready made leader in waiting. But significantly, it’s not a consistent call for Out across the group. Boris is not for spinning in the same clear ‘out’ direction as the Galloway group.

Boris can keep a foot in the circle saying his heart is pro-In and really wants In, but on better terms. He can lead a future party for Outers Inners and whatever the outcome, be seen to welcome all. Quite a gentleman’s agreement perhaps.

His Out just means out of some things, not others. Given all his past positioning and role as Mayor in the City of London, out wouldn’t mean wanting to risk any of the financial and business related bits.

So what does that leave?  Pay attention in his speech to the three long paragraphs on the Charter of Fundamental Human Rights.

His rambling explanation indirectly explained quite brilliantly the bits he wants ‘out’ to mean. Out means in the Boris-controlled circle, only getting out from those parts of EU directives that the party players don’t like. The bits when they get told what to do, or told off for doing something wrong, or not playing nicely with the group.

The human rights rulings and oversight from the CJEU or views which are not aligned with the ECHR for example.

As Joshua Rozenberg wrote on sovereignty, “Human rights reform has been inextricably intertwined with renegotiating the UK’s membership of the EU. And it is all the government’s fault.”

Rozenberg writes that Mr Gove told the Lords constitution committee in December that David Cameron asked him whether “we should use the British Bill of Rights in order to create a constitutional long stop […] and whether the UK Supreme Court should be that body.”

“Our top judges were relabelled a “Supreme Court” not long ago; they’ve been urged to assert themselves against the European Court of Human Rights, and are already doing so against EU law”, commented Carl Gardner elsewhere.

The Gang of Six cabinet ministers are known for their anti EU disaffectation and most often its attachment to human rights  – Michael Gove, Iain Duncan Smith, Chris Grayling, Theresa Villiers, Priti Patel and John Whittingdale plus a further 20 junior ministers and potentially dozens of backbenchers.

We can therefore expect the Out campaign to present situations in which British ‘sovereignty’ was undermined by court rulings that some perceive as silly or seriously flawed.

Every case in which a British court ever convicted someone and was overturned ‘by Europe’ that appeared nonsensical will be wheeled out by current justice Secretary Mr Gove.

Every tougher ‘terrorist’ type case, whose human rights were upheld that had been denied them by a UK ruling might be in the more ‘extreme’ remit of the former justice secretary mention whenever Grayling makes his case for Out, especially where opinions may conflict with interpretations and the EU Charter.

Priti Patel has tough views of crime and punishment, reportedly in favour of the the death penalty.

IDS isn’t famous for a generous application of disability rights.

John Whittingdale gave his views on the present relationship with the EU and CJEU here in debate in 2015 and said (22:10) he was profoundly “concerned the CJEU is writing laws which we consider to be against our national interest.”

Data protection and privacy is about to get a new EU directive that will strengthen some aspects of citizens’ data rights. Things like the right to be informed what information is stored about us, or have mistakes corrected.

Don’t forget after all that Mr Gove is the Education SoS who signed off giving away the confidential personal data of now 20 million children to commercial third parties from the National Pupil Database. Clearly not an Article 8 fan.

We are told that we are being over reactive to our loss of rights to privacy. Over generous in protections to people who don’t deserve it. Ignoring that rights are universal and indivisible, we are encouraged to see them as something that must be earned. As such, something which may or may not be respected. And therefore can be removed.

Convince the majority of that, and legislation underpinning our rights will be easier to take away without enough mass outcry that will make a difference.

To be clear, a no vote would make no actual legal difference, “Leaving the EU (if that’s what the people vote for) is NOT at all inconsistent with the United Kingdom’s position as a signatory to the European Convention on Human Rights (ECHR), a creature of the COUNCIL of EUROPE and NOT the European Union.” [ObiterJ]

But by conflating ‘the single market’, ‘the Lisbon Treaty’, and the ‘ability to vindicate people’s rights under the 55-clause “Charter of Fundamental Human Rights”, Boris has made the no vote again equate conflated things: European Union membership = loss of sovereignty = need to reduce the control or influence of all organisations seen as ‘European’ (even if like the ECHR it’s to do with the Council of Europe Convention signed post WWII and long before EU membership) and all because we are a signatory to a package deal.

Boris has reportedly no love of ‘lefty academics’ standing up for international and human rights laws and their uppity lawyers in the habit of “vindicating the rights of their clients.”

Boris will bob in and out of both the IN group for business and the OUT group for sovereignty, trying not to fall out with anyone too much and giving serious Statesmanship to the injustices inflicted on the UK. There will be banter and back biting, but the party views will be put ahead of personalities.

And the public? What we vote, won’t really matter.I think we’ll be persuaded to be IN, or to get a two step Out-In.

Either way it will give the relevant party leader, present or future, the mandate to do what he wants. Our engagement is optional.

Like the General Election, the people’s majority viewed as a ‘mandate’ seems to have become a little confused with sign-off to dictate a singular directive, rather than represent a real majority. It cannot do anything but this, since the majority didn’t vote for the government that we have.

In this EU Referendum No wont mean No. It’ll mean a second vote to be able to split the package of no-to-all-things into a no-to-some-things wrapped up in layers of ‘sovereignty’ discussion. Unpack them, and those things will be for the most part, human rights things. How they will then be handled at a later date is utterly unclear but the mandate will have been received.

Imagine if Boris can persuade enough of the undecideds that he is less bonkers than some of the EU rulings on rights, he’ll perhaps get an Out mandate, possibly meaning a second vote just to be sure, splitting off the parts everyone obviously wants to protect, the UK business interests, and allowing the government to negotiate the opt out from legislation of human rights’ protections. Things that may appear to make more people dependent on the state, and contrary to the ideology of shrinking state support.

A long-promised review of the British Human Rights Act 1998 will inevitably follow, and only makes sense if we are first made exempt from the European umbrella.

Perhaps we will hear over the next four months more about what that might mean.

Either way, the Out group will I’m sure take the opportunity to air their views and demand the shake up of where Human Rights laws are out of line for the shape of the UK future nation they wish to see us become.

Some suggest Boris has made a decision that will cost him his political career. I disagree. I think it’s incredibly clever. Not a conspiracy, simply clever party planning to make every outcome a win for the good of the party and the good of the nation,  and a nod to Boris as future leader in any case. After all, he didn’t actually say he wanted #Brexit, just reform.

It’s not all about Boris, but is staging party politics at its best, and simultaneously sets the scene for future change in the human rights debate.

change management, National Pupil Database, politics, scope creep, surveillance, transparency

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

Who is using all this Big Data? What decisions are being made on the back of it that we never see?

In the everyday and press it often seems that the general public does not understand data, and can easily be told things which we misinterpret.

There are tools in social media influencing public discussions and leading conversations in a different direction from that it had taken, and they operate without regulation.

It is perhaps meaningful that pro-reform Wellington School last week opted out of some of the greatest uses of Big Data sharing in the UK. League tables. Citing their failures. Deciding they were “in fact, a key driver for poor educational practice.”

Most often we cannot tell from the data provided what we are told those Big Data should be telling us. And we can’t tell if the data are accurate, genuine and reliable.

Yet big companies are making big money selling the dream that Big Data is the key to decision making. Cumulatively through lack of skills to spot inaccuracy, and inability to do necessary interpretation, we’re being misled by what we find in Big Data.

Being misled is devastating for public trust, as the botched beginnings of care.data found in 2014. Trust has come to be understood as vital for future based on datasharing. Public involvement in how we are used in Big Data in the future, needs to include how our data are used in order to trust they are used well. And interpreting those data well is vital. Those lessons of the past and present must be learned, and not forgotten.

It’s time to invest some time in thinking about safeguarding trust in the future, in the unknown, and the unseen.

We need to be told which private companies like Cinven and FFT have copies of datasets like HES, the entire 62m national hospital records, or the NPD, our entire schools database population of 20 million, or even just its current cohort of 8+ million.

If the public is to trust the government and public bodies to use our data well, we need to know exactly how those data are used today and all these future plans that others have for our personal data.

When we talk about public bodies sharing data they hold for administrative purposes, do we know which private companies this may mean in reality?

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 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.

But how will we know if new plans design well, or not?

Who exactly holds and manages those data and where is the oversight of how they are being used?

Using Big Data to be predictive and personal

How do we definde “best use of data” in “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?

UK researchers and police are already analysing big data for predictive factors at postcode level for those at risk or harm, for example in combining health and education data.

What has grown across the Atlantic is now spreading here. When I lived there I could already see some of what is deeply flawed.

When your system has been as racist in its policing and equity of punishment as institutionally systemic as it is in the US, years of cumulative data bias translates into ‘heat lists’ and means “communities of color will be systematically penalized by any risk assessment tool that uses criminal history as a legitimate criterion.”

How can we ensure British policing does not pursue flawed predictive policies and methodologies, without seeing them?

What transparency have our use of predictive prisons and justice data?

What oversight will the planned new increase in use of satellite tags, and biometrics access in prisons have?

What policies can we have in place to hold data-driven decision-making processes accountable?<

What tools do we need to seek redress for decisions made using flawed algorithms that are apparently indisputable?

Is government truly committed to being open and talking about how far the nudge unit work is incorporated into any government predictive data use? If not, why not?

There is a need for a broad debate on the direction of big data and predictive technology and whether the public understands and wants it.If we don’t understand, it’s time someone explained it.

If I can’t opt out of O2 picking up my travel data ad infinitum on the Tube, I will opt out of their business model and try to find a less invasive provider. If I can’t opt out of EE picking up my personal data as I move around Hyde park, it won’t be them.

Most people just want to be left alone and their space is personal.

A public consultation on smart-technology, and its growth into public space and effect on privacy could be insightful.

Feed me Seymour?

With the encroachment of integrated smart technology over our cities – our roads, our parking, our shopping, our parks, our classrooms, our TV and our entertainment, even our children’s toys – surveillance and sharing information from systems we cannot see  start defining what others may view, or decide about us, behind the scenes in everything we do.

As it expands city wide, it will be watched closely if data are to be open for public benefit, but not invade privacy if “The data stored in this infrastructure won’t be confidential.”

If the destination of digital in all parts of our lives is smart-cities then we have to collectively decide, what do we want, what do we design, and how do we keep it democratic?

What price is our freedom to decide how far its growth should reach into public space and private lives?

The cost of smart cities to individuals and the public is not what it costs in investment made by private conglomerates.

Already the cost of smart technology is privacy inside our homes, our finances, and autonomy of decision making.

Facebook and social media may run algorithms we never see that influence our mood or decision making. Influencing that decision making is significant enough when it’s done through advertising encouraging us to decide which sausages to buy for your kids tea.

It is even more significant when you’re talking about influencing voting.

Who influences most voters wins an election. If we can’t see the technology behind the influence, have we also lost sight of how democracy is decided? The power behind the mechanics of the cogs of Whitehall may weaken inexplicably as computer driven decision from the tech companies’ hidden tools takes hold.

What opportunity and risk to “every part of government” does ever expanding digital bring?

The design and development of smart technology that makes decisions for us and about us, lies in in the hands of large private corporations, not government.

The means the public-interest values that could be built by design and their protection and oversight are currently outside our control.

There is no disincentive for companies that have taken private information that is none of their business, and quite literally, made it their business to not want to collect ever more data about us. It is outside our control.

We must plan by-design for the values we hope for, for ethics, to be embedded in systems, in policies, embedded in public planning and oversight of service provision by all providers. And that the a fair framework of values is used when giving permission to private providers who operate in public spaces.

We must plan for transparency and interoperability.

We must plan by-design for the safe use of data that does not choke creativity and innovation but both protects and champions privacy as a fundamental building block of trust for these new relationships between providers of private and public services, private and public things, in private and public space.

If “digital is changing how we deliver every part of government,” and we want to “harness the best of digital and technology, and the best use of data to improve public services right across the board” then we must see integration in the planning of policy and its application.

Across the board “the best use of data” must truly value privacy, and enable us to keep our autonomy as individuals.

Without this, the cost of smart cities growing unchecked, will be an ever growing transfer of power to the funders behind corporations and campaign politics.

The ultimate price of this loss of privacy, will be democracy itself.

****

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

Thinking to some purpose