Tag Archives: technology

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.

care.data, change management, confidentiality, consent, politics, privacy

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

Smart Technology we have now: A UK Case Study

In places today, where climate surveillance sensors are used to predict and decide which smog-days cars should be banned from cities, automatic number-plate recognition (ANPR) can identify cars driving on the wrong days and send automatic penalties.

Similarly ANPR technology is used in our UK tunnels and congestion charging systems. One British company encouraging installation of ANPR in India is the same provider of a most significant part of our British public administrative data and surveillance softwares in a range of sectors.

About themselves that company says:

“Northgate Public Services has a unique experience of delivering ANPR software to all Home Office police forces. We developed and managed the NADC, the mission critical solution providing continuous surveillance of the UK’s road network.  The NADC is integrated with other databases, including the Police National Computer, and supports more than 30 million reads a day across the country.”

30 million snapshots from ‘continuous surveillance of the UK’s road network‘. That’s surprised me. That’s half the population in England, not all of whom drive. 30 million every day. It’s massive, unreasonable, and risks backlash.

Northgate Public Services’ clients also include 80% of UK water companies, as well as many other energy and utility suppliers.

And in the social housing market they stretch to debt collection, or ‘income management’.

So who I wondered, who is this company that owns all this data-driven access to our homes, our roads, our utilities, life insurance, hospital records and registeries, half of all UK calls to emergency services?

Northgate Information Solutions announced the sale of its Public Services division in December 2014 to venture capital firm Cinven. Cinven that also owns a 62% shareholding in the UK private healthcare provider Spire with all sorts of influence given their active share of services and markets. 

Not only does this private equity firm hold these vast range of data systems across a wide range of sectors, but it’s making decisions about how our public policies and money are being driven.

Using health screening data they’re even making decisions that affect our future and our behaviour and affect our private lives: “software provides the information and tools that housing officers need to proactively support residents, such as sending emails, letters or rent reminders by SMS and freeing up time for face-to-face support.”

Of their ANPR systems, Northgate says the data should be even more widely used “to turn CONNECT: ANPR into a critical source of intelligence for proactive policing.”

If the company were to start to ‘proactively’ use all the data it owns across the sectors we should be asking, is ‘smart’ sensible and safe?

Where is the boundary between proactive and predictive? Or public and private?

Where do companies draw the line between public and personal space?

The public services provided by the company seem to encroach into our private lives in many ways, In Northgate’s own words, “It’s also deeply personal.”

Who’s driving decision making is clear. The source of their decision making is data. And it’s data about us.

Today already whether collected by companies proactively like ANPR or through managing data we give them with consent for direct administrative purpose, private companies are the guardians of massive amounts of our personal and public data.

What is shocking to me, is how collected data in one area of public services are also used for entirely different secondary purposes without informed consent or an FYI, for example in schools.

If we don’t know which companies manage our data, how can we trust that it is looked after well and that we are told if things go wrong?

Steps must be taken in administrative personal data security, transparency and public engagement to shore up public trust as the foundation for future datasharing as part of the critical infrastructure for any future strategy, for public or commercial application. Strategy must include more transparency of the processing of our data and public involvement, not the minimum, if ‘digital citizenship’ is to be meaningful.

How would our understanding of data improve if anyone using personal data were required to put in place clear public statements about their collection, use and analysis of data?  If the principles of data protection were actually upheld, in particular that individuals should be informed? How would our understanding of data improve especially regards automated decision making and monitoring technology? Not ninety page privacy policies. Plain English. If you need ninety pages, you’re doing too much with my data.

Independent privacy impact assessments should be mandatory and published before data are collected and shared with any party other than that to which it was given for a specific purpose. Extensions broadening that purpose should require consultation and consent. If that’s a street, then make it public in plain sight.

Above all, planning committees in local government, in policy making and practical application, need to think of data in every public decision they make and its ethical implications. We need some more robust decision-making in the face of corporate data grabs, to defend data collected in public space safe, and to keep some private.

How much less fun is a summer’s picnic spent smooching, if you feel watched? How much more anxious will we make our children if they’re not allowed to ever have their own time to themselves, and every word they type in a school computer is monitored?

How much individual creativity and innovation does that stifle? We are effectively censoring children before they have written a word.

Large corporations have played historically significant and often shadowy roles in surveillance that retrospectively were seen as unethical.

We should consider sooner rather than later, if corporations such as BAE systems, Siemens and the IMSs of the world act in ways worthy of our trust in such massive reach into our lives, with little transparency and oversight.

“Big data is big opportunity but Government should tackle misuse”

The Select Committee warned in its recent report on Big Data that distrust arising from concerns about privacy and security is often well-founded and must be resolved by industry and Government.

If ‘digital’ means smart technology in the future is used in “every part of government” as announced at #Sprint16, what will its effects be on the involvement and influence these massive corporations on democracy itself?

******

I thought about this more in depth on Part one here,  “Smart systems and Public Services” here (part two), and continue after this by looking at “The Best Use of Data” used in predictions and the Future (part four).

deregulation, health, human rights, privacy, scope creep, surveillance, Tech, trust

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

Smart cities: private reach in public space and personal lives

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

People need to Understand what “Smart” means

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

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

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

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

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

Decision making, Mining and Value

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*******

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

family, human rights, National Pupil Database, politics, privacy, surveillance, Tech, transparency, trust

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

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

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

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

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

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

Nicky Morgan’s “fantastic” GPS tracking App

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

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

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

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

How we use digital in schools shapes our future society

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References:

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

[2] UN Convention of the Rights of the Child

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

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

[4] Nicky Morgan’s full speech at BETT

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

 

 

change, politics, surveillance, Tech, transparency, words

George and the Chinese Dragon. Public spending and the cost of dignity.

In 2005 I sat early one morning in an enormous international hotel chain’s breakfast room, in Guangzhou.

Most of the men fetching two adult breakfasts from the vast buffet wore cream coloured chinos, and button down shirts. They sported standardised haircuts with hints of silver. Stylish women sat at  impeccable tables, cradling  babies in pink hats or spoon feeding small children.

On a busy downtown street, close to the Chinese embassy, the hotel was popular with American parents-to-be.

My local colleague explained to me later, that her sadness over thousands of Chinese daughters exported from a one-child policy nation in 2005 was countered by the hope that loving foreign families were found for them.

She repeated with dignity, party mantras and explanations drilled at school. She has good job, (but still she could not afford children). Too little land, too few schools, and healthcare too expensive. She sighed. Her eyes lit up as she looked at my bump and asked if I knew “girl or boy?” If it were a girl, she added, how beautiful she would be with large open eyes. We laughed about the contradictory artificial stereotypes of beauty, from East and West, each nation wanting what the other did not have.

Ten tears later in 2015, British Ministers have been drawing on China often recently, as a model for us to follow; in health, education and for the economy. Seeking something they think we do not have. Seeking to instill ‘discipline, hard-working, economy-first’ spin.

At the recent ResearchEd conference, Nick Gibb, [1] Minister of State at the Department for Education, talked about the BBC documentary “Are Our Kids Tough Enough” for several minutes and the positive values of the Chinese and its education system. It supposedly triggered ‘a global debate’ when British pupils experienced “the harsh discipline of a Chinese classroom”.

The Global Times praised the  First Minister Mr. Osborne as “the first Western official in recent years who focused on business potential rather than raising a magnifying glass to the ‘human rights issue” during his recent visit [2] when he put economic growth first.

Jeremy Hunt, Secretary of State for Health, was quoted at the political party conference  saying that he saw tax cut changes necessary as a cultural shift.  He suggested we should adopt the ‘hardworking’ character of the Chinese.

An attribute that is as artificial as it is inane.

Collective efforts over the last year or more, to project ‘hard-working’ as a measure of contribution to UK society into politics has become more concentrated, especially around the election. People who are not working, are undermined by statements inferring the less productive for the nation, the less value someone has as a person. Comments are repeated in a sustained drip feed, from Lord Freud’s remarks a year ago that disabled workers were not worth the full wage, to Hancock’s recent revelation that the decision to not apply the new minimum wage to the under 25s from 2016 “was an active policy choice.”  Mr. Hunt spoke about dignity being self-earned, not dependent on richness per se, but being self-made.

“If that £16,500 is either a high proportion or entirely through the benefit system you are trapped. It matters if you are earning that yourself, because if you are earning it yourself you are independent and that is the first step towards self-respect.”

This choice to value some people’s work less than others and acceptance of spin, is concerning.

What values are Ministers suggesting we adopt in the relentless drive for economic growth? [3] When our Ministers ignore human rights and laud Chinese values in a bid to be seen as an accepting trading partner, I wonder at what cost to our international integrity?

Simple things we take for granted such as unimpeded internet  access are not available in China. In Chinese society, hard working is not seen as such a positive value. It is a tolerated norm, and sometimes an imposed one at that, where parents leave their child with grandparents in the countryside and visit twice a year on leave from their city-based jobs. Our Ministers’ version of hardworking Chinese is idyllic spin compared with reality.

China is about to launch a scheme to measure sincerity and how each citizen compares with others in terms of compliance and dissent. Using people’s social media data to determine their ‘worth’ is an ominous prospect.

Mark Kitto from 2012 on why you’ll never be Chinese is a great read. I agree, “there are hundreds of well-rounded, wise Chinese people with a modern world view, people who could, and would willingly, help their motherland face the issues that are growing into state-shaking problems .”

Despite such institutional issues, Mr. Osborne appears to have an open door for deals with the Chinese state. Few people missed the announcements he made in China that HS2 will likely be built by Chinese investors, despite home grown opposition. Ministers and EDF have reportedly agreed on a controversial £25bn development of Hinkley Point C, nuclear plant, with most of upfront costs provided by Chinese companies, although “we are the builders.” [4]

Large parts of UK utilities’ infrastructure is founded on Chinese sourced spending in the UK it’s hard to see who ‘we’ are meant to be. [5] And that infrastructure is a two-way trade. Just as Chinese money has bought many of our previously publicly owned utilities, we have sold a staggeringly long list of security related items to the Chinese state. [6]

In July 2014 the four House of Commons Select Committees: “repeated their previous Recommendation that the Government should apply significantly more cautious judgements when considering arms export licence applications for goods to authoritarian regimes which might be used for internal repression.” 

UK to China exports
Chris Patten, former Hong Kong Governor,  criticised Osborne’s lax attitude to human rights but individual and collective  criticism appear to go unheard.

This perhaps is one measure of British economic growth at all costs. Not only is Britain supplying equipment that might be used for internal repression but the Minister appears to have adopted a singularly authoritarian attitude and democratic legitimacy of the Committees has been ignored. That is concerning.

The packaging of how upcoming cuts will be presented is clear.  We will find out what “hard working families” means to the Treasury. We need to work harder, like the Chinese, and through this approach, we will earn our dignity. No doubt rebuilding Britain, on great British values. Welfare will continue to be labelled as benefits, and with it, a value judgement on economic productivity equated with human worth. Cutting welfare, will be packaged as helping those people to help themselves out of self inflicted ‘bad’ situations, in which they have lost their self worth or found an easy ‘lifestyle choice’.

As welfare spending is reduced, its percentage spend with big service providers has risen after reforms, and private companies profit where money was once recycled in the state system. There is a glaring gap in evidence for some of these decisions taken.

What is next? If for example, universal benefits such as Universal Infant Free School Meals are cut, it will take food literally from the mouths of babes, in families who cannot afford to lose hot school dinners, living in poverty but not qualifying for welfare. The policy may be flawed because Free School Meals based on pupil premium entitlement does not cater for all who need it, but catering for none of them is not an improvement.

Ministers focus the arguments of worth and value around the individual. Doctors have been told to work harder. Schools have been told to offer more childcare to enable parents to work harder. How much harder can we really expect people to work? Is the Treasury’s vision is for us all to work more to pay more taxes? It is flawed if by adopting the political aim, the vast majority of people take home little more pay and sacrifice spare time with our friends and loved ones, running our health into the ground as a result.

The Chinese have a proverb that shows a wisdom missing from Ministers’ recent comments: “Time is money, and it is difficult for one to use money to get time.”

I often remember the hotel breakfast room, and wonder how many mothers, in how many in cities in China miss their daughters, whom they could not afford to keep, through fear of the potential effect. How many young men live without women in their lives who would want to, but find the gender imbalance a barrier to meeting someone. How many are struggling to care for elderly parents.

Not all costs can be measured in money.

The grandmother I met on the station platform last Wednesday had looked after her grandchild for half the day and has him overnight weekdays, so that Mum can first sleep and then work a night shift stacking shelves. That’s her daughter’s second shift of the day. She hardly sees her son.  The husband works the shelf-stacking third shift to supplement his income as a mechanic.

That is a real British family.

Those parents can’t work any harder. Their family is already at breaking point. They take no state welfare.  They don’t qualify for any support.

Must we be so driven to become ‘hard working families’ that our children will barely know their parents? Are hungry pupils to make do as best they can at lunchtime? Are these side effects children must be prepared to pay if their parents work ever harder to earn enough to live and earn their ‘dignity’ as defined by the Secretary of State for health?

Dignity is surely inherent in being human. Not something you earn by what you do. At the heart of human rights is the belief that everybody should be treated equally and with dignity – no matter what their circumstances.

If we adopt the Ministers’ be-like-the-Chinese mantra, and accept human dignity is something that must be earned, we should ask now what price have they put on it?

MPs must slay the dragon of spin and demand transparency of the total welfare budget and government spend with its delivery providers. There is a high public cost of further public spending cuts. In order to justify them, it is not the public who must work harder, but the Treasury, in order to deliver a transparent business case what the further sacrifices of ‘hard working families’ will achieve.

 

###

[1] ResearchEd conference, Nick Gibb, Minister of State at the Department for Education

[2] New Statesman

[3] https://www.opendemocracy.net/ournhs/jen-persson/why-is-government-putting-health-watchdogs-on-leash-of-%E2%80%98promoting-economic-growth

[4] The Sun: George Osborne party conference speech with 25 mentions of builders: “We are the builders”, said Mr. Osborne.

[5] The Drum: Li Ka Shing and British investment https://www.thedrum.com/opinion/2015/01/28/meet-li-ka-shing-man-o2-his-sights-has-quietly-become-one-britains-biggest

[6] Arms exports to authoritarian regimes and countries of concern worldwide The Committees http://www.publications.parliament.uk/pa/cm201415/cmselect/cmquad/608/60805.htm#a104

 

[image: Wassily Kandinsky ca 1911, George and the Dragon]

#caredata, care.data, engagement, health

The nhs.uk digital platform: a personalised gateway to a new NHS?

In recent weeks rebranding the poverty definitions and the living wage in the UK deservedly received more attention than the rebrand of the website NHS Choices into ‘nhs.uk.‘

The site that will be available only in England and Wales despite its domain name, will be the doorway to enter a personalised digital NHS offering.

As the plans proceed without public debate, I took some time to consider the proposal announced through the National Information Board (NIB) because it may be a gateway to a whole new world in our future NHS. And if not, will it be a  big splash of cash but create nothing more than a storm-in-a-teacup?

In my previous post I’d addressed some barriers to digital access. Will this be another? What will it offer that isn’t on offer already today and how will the nhs.uk platform avoid the problems of its predecessor HealthSpace?

Everyone it seems is agreed, the coming cuts are going to be ruthless. So, like Alice, I’m curious. What is down the rabbit hole ahead?

What’s the move from NHS Choices to nhs.uk about?

The new web platform nhs.uk would invite users to log on, using a system that requires identity, and if compulsory, would be another example of a barrier to access simply from a convenience point of view, even leaving digital security risks aside.

What will nhs.uk offer to incentivise users and offer benefit as a trade off against these risks, to go down the new path into the unknown and like it?

“At the heart of the domain , will be the development of nhs.uk into a new integrated health and care digital platform that will be a source of access to information, directorate, national services and locally accredited applications.”

In that there is nothing new compared with information, top down governance and signposting done by NHS Choices today.  

What else?

“Nhs.uk will also become the citizen ’s gateway to the creation of their own personal health record, drawing on information from the electronic health records in primary and secondary care.”

nhs.uk will be an access point to patient personal confidential records

Today’s patient online we are told offers 97% of patients access to their own GP created records access. So what will nhs.uk offer more than is supposed to be on offer already today? Adding wearables data into the health record is already possible for some EMIS users, so again, that won’t be new. It does state it will draw on both primary and secondary records which means getting some sort of interoperability to show both hospital systems data and GP records. How will the platform do this?

Until care.data many people didn’t know their hospital record was stored anywhere outside the hospital. In all the care.data debates the public was told that HES/SUS was not like a normal record in the sense we think of it. So what system will secondary care records come from? [Some places may have far to go. My local hospital pushes patients round with beige paper folders.] The answer appears to be an unpublished known or an unknown.

What else?

nhs.uk will be an access point to tailored ‘signposting’ of services

In addition to access to your personal medical records in the new “pull not push” process the nhs.uk platform will also offer information and services, in effect ‘advertising’ local services, to draw users to want to use it, not force its use. And through the power of web tracking tools combined with log in, it can all be ‘tailored’ or ‘targeted’ to you, the user.

“Creating an account will let you save information, receive emails on your chosen topics and health goals and comment on our content.”

Do you want to receive emails on your chosen topics or comment on content today? How does it offer more than can already be done by signing up now to NHS Choices?

NHS Choices today already offers information on local services, on care provision and symptoms’ checker.

What else?

Future nhs.uk users will be able to “Find, Book, Apply, Pay, Order, Register, Report and Access,” according to the NIB platform headers.

platform

“Convenient digital transactions will be offered like ordering and paying for prescriptions, registering with GPs, claiming funds for treatment abroad, registering as an organ and blood donor and reporting the side effects of drugs . This new transactional focus will complement nhs.uk’s existing role as the authoritative source of condition and treatment information, NHS services and health and care quality information.

“This will enable citizens to communicate with clinicians and practices via email, secure video links and fill out pre-consultation questionnaires. They will also be able to include data from their personal applications and wearable devices in their personal record. Personal health records will be able to be linked with care accounts to help people manage their personal budget.”

Let’s consider those future offerings more carefully.

Separating out the the transactions that for most people will be one off, extremely rare or never events (my blue) leaves other activities which you can already do or will do via the patient online programme (in purple).

The question is that although video and email are not yet widespread where they do work today and would in future, would they not be done via a GP practice system, not a centralised service? Or is the plan not that you could have an online consultation with ‘your’ named GP through nhs.uk but perhaps just ‘any’ GP from a centrally provided GP pool? Something like this? 

That leaves two other things, which are both payment tools (my bold).

i. digital transactions will be offered like ordering and paying for prescriptions
ii. …linked with care accounts to help people manage their personal budget.”

Is the core of the new offering about managing money at individual and central level?

Beverly Bryant, ‎Director of Strategic Systems and Technology at NHS England, said at the #kfdigi2015 June 16th event, that implementing these conveniences had costs saving benefits as well: “The driver is customer service, but when you do it it actually costs less.”

How are GP consultations to cost less, significantly less, to be really cost effective compared with the central platform to enable it to happen, when the GP time is the most valuable part and remains unchanged spent on the patient consultation and paperwork and referral for example?

That most valuable part to the patient, may be seen as what is most costly to ‘the system’.

If the emphasis is on the service saving money, it’s not clear what is in it for people to want to use it and it risks becoming another Healthspace, a high cost top down IT rollout without a clear customer driven need.

The stated aim is that it will personalise the user content and experience.

That gives the impression that the person using the system will get access to information and benefits unique and relevant to them.

If this is to be something patients want to use (pull) and are not to be forced to use (push) I wonder what’s really at its core, what’s in it for them, that is truly new and not part of the existing NHS Choices and Patient online offering?

What kind of personalised tailoring do today’s NHS Choices Ts&Cs sign users up to?

“Any information provided, or any information the NHS.uk site may infer from it, are used to provide content and information to your account pages or, if you choose to, by email.  Users may also be invited to take part in surveys if signed up for emails.

“You will have an option to submit personal information, including postcode, age, date of birth, phone number, email address, mobile phone number. In addition you may submit information about your diet and lifestyle, including drinking or exercise habits.”

“Additionally, you may submit health information, including your height and weight, or declare your interest in one or more health goals, conditions or treatments. “

“With your permission, academic institutions may occasionally use our data in relevant studies. In these instances, we shall inform you in advance and you will have the choice to opt out of the study. The information that is used will be made anonymous and will be confidential.”

Today’s NHS Choices terms and conditions say that “we shall inform you in advance and you will have the choice to opt out of the study.”

If that happens already and the NHS is honest about its intent to give patients that opt out right whether to take part in studies using data gathered from registered users of NHS Choices, why is it failing to do so for the 700,000 objections to secondary use of personal data via HSCIC?

If the future system is all about personal choice NIB should perhaps start by enforcing action over the choice the public may have already made in the past.

Past lessons learned – platforms and HealthSpace

In the past, the previous NHS personal platform, HealthSpace, came in for some fairly straightforward criticism including that it offered too little functionality.

The Devil’s in the Detail remarks are as relevant today on what users want as they were in 2010. It looked at the then available Summary Care Record (prescriptions allergies and reactions) and the web platform HealthSpace which tried to create a way for users to access it.

Past questions from Healthspace remain unanswered for today’s care.data or indeed the future nhs.uk data: What happens if there is a mistake in the record and the patient wants it deleted? How will access be given to third party carers/users on behalf of individuals without capacity to consent to their records access?

Reasons given by non-users of HealthSpace included lack of interest in managing their health in this way, a perception that health information was the realm of health professionals and lack of interest or confidence in using IT.

“In summary, these findings show that ‘self management’ is a much more complex, dynamic, and socially embedded activity than original policy documents and technical specifications appear to have assumed.”

What lessons have been learned? People today are still questioning the value of a centrally imposed system. Are they being listened to?

Digital Health reported that Maurice Smith, GP and governing body member for Liverpool CCG, speaking in a session on self-care platforms at the King’s Fund event he said that driving people towards one national hub for online services was not an option he would prefer and that he had no objection to a national portal, “but if you try drive everybody to a national portal and expect everybody to be happy with that I think you will be disappointed.”

How will the past problems that hit Healthspace be avoided for the future?

How will the powers-at-be avoid repeating the same problems for its ongoing roll out of care.data and future projects? I have asked this same question to NHS England/NIB leaders three times in the last year and it remains unanswered.

How will you tell patients in advance of any future changes who will access their data records behind the scenes, for what purpose, to future proof any programmes that plan to use the data?

One of the Healthspace 2010 concerns was: “Efforts of local teams to find creative new uses for the SCR sat in uneasy tension with implicit or explicit allegations of ‘scope creep’.”

Any programme using records can’t ethically sign users up to one thing and change it later without informing them before the change. Who will pay for that and how will it be done? care.data pilots, I’d want that answered before starting pilot communications.

As an example of changes to ‘what’ or content scope screep, future plans will see ‘social care flags added’ to the SCR record, states p.17 of the NIB 2020 timeline. What’s the ‘discovery for the use of genomic data complete’ about on p.11?  Scope creep of ‘who’ will access records, is very current. Recent changes allow pharmacists to access the SCR yet the change went by with little public discussion. Will they in future see social care flags or mental health data under their SCR access? Do I trust the chemist as I trust a GP?

Changes without adequate public consultation and communication cause surprises. Bad idea. Sir Nick Partridge said ensuring ‘no surprises’ is key to citizens’ trust after the audit of HES/SUS data uses. He is right.

The core at the heart of this nhs.uk plan is that it needs to be used by people, and enough people to make the investment vs cost worthwhile. That is what Healthspace failed to achieve.

The change you want to see doesn’t address the needs of the user as a change issue. (slide 4) This is all imposed change. Not user need-driven change.

Dear NIB, done this way seems to ignore learning from Healthspace. The evidence shown is self-referring to Dr. Foster and NHS Choices. The only other two listed are from Wisconsin and the Netherlands, hardly comparable models of UK lifestyle or healthcare systems.

What is really behind the new front door of the nhs.uk platform?

The future nhs.uk looks very much as though it seeks to provide a central front door to data access, in effect an expanded Summary Care Record (GP and secondary care records) – all medical records for direct care – together with a way for users to add their own wider user data.

Will nhs.uk also allow individuals to share their data with digital service providers of other kinds through the nhs.uk platform and apps? Will their data be mined to offer a personalised front door of tailored information and service nudges? Will patients be profiled to know their health needs, use and costs?

If yes, then who will be doing the mining and who will be using that data for what purposes?

If not, then what value will this service offer if it is not personal?

What will drive the need to log on to another new platform, compared with using the existing services of patient online today to access our health records, access GPs via video tools, and without any log-in requirement, browse similar content of information and nudges towards local services offered via NHS Choices today?

If this is core to the future of our “patient experience” of the NHS the public should be given the full and transparent facts  to understand where’s the public benefit and the business case for nhs.uk, and what lies behind the change expected via online GP consultations.

This NIB programme is building the foundation of the NHS offering for the next ten years. What kind of NHS are the NIB and NHS England planning for our children and our retirement through their current digital designs?

If the significant difference behind the new offering for nhs.uk platform is going to be the key change from what HealthSpace offered and separate from what patient online already offers it appears to be around managing cost and payments, not delivering any better user service.

Managing more of our payments with pharmacies and personalised budgets would reflect the talk of a push towards patient-responsible-self-management  direction of travel for the NHS as a whole.

More use of personal budgets is after all what Simon Stevens called a “radical new option” and we would expect to see “wider scale rollout of successful projects is envisaged from 2016-17″.

When the system will have finely drawn profiles of its users, will it have any effect for individuals in our universal risk-shared system? Will a wider roll out of personalised budgets mean more choice or could it start to mirror a private insurance system in which a detailed user profile would determine your level of risk and personal budget once reached, mean no more service?

What I’d like to see and why

To date, transparency has a poor track record on sharing central IT/change programme business plans.  While saying one thing, another happens in practice. Can that be changed? Why all the effort on NHS Citizen and ‘listening’, if the public is not to be engaged in ‘grown up debate‘ to understand the single biggest driver of planned service changes today: cost.

It’s at best patronising in the extreme, to prevent the public from seeing plans which spend public money.

We risk a wasteful, wearing repeat of the past top down failure of an imposed NPfIT-style HealthSpace, spending public money on a project which purports to be designed to save it.

To understand the practical future we can look back to avoid what didn’t work and compare with current plans. I’d suggest they should spell out very clearly what were the failures of Healthspace, and why is nhs.uk different.

If the site will offer an additional new pathway to access services than we already have, it will cost more, not less. If it has genuine expected cost reduction compared with today, where precisely will it come from?

I’d suggest you publish the detailed business plan for the nhs.uk platform and have the debate up front. Not only the headline numbers towards the end of these slides, but where and how it fits together in the big picture of Stevens’ “radical new option”.  This is public money and you *need* the public on side for it to work.

Publish the business cases for the NIB plans before the public engagement meet ups, because otherwise what facts will opinion be based on?

What discussion can be of value without them, when we are continually told by leadership those very  details are at the crux of needed change – the affordability of the future of the UK health and care system?

Now, as with past projects, The Devil’s in the Detail.

***

NIB detail on nhs.uk and other concepts: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437067/nib-delivering.pdf

The Devil’s in the Detail: Final report of the independent evaluation of the Summary Care Record and HealthSpace programmes 2010

care.data, change management, choice, Tech, transparency, trust

Digital revolution by design: infrastructures and the fruits of knowledge

Since the beginning of time and the story of the Garden of Eden, man has found a way to share knowledge and its power.

Modern digital tools have become the everyday way to access knowledge for many across the world, giving quick access to information and sharing power more fairly.

In this third part of my thoughts on digital revolution by design, triggered by the #kfdigi15 event on June 16-17, I’ve been considering some of the constructs we have built; those we accept and those that could be changed, given the chance, to build a better digital future.

Not only the physical constructions, the often networked infrastructures, but intangible infrastructures of principles and power, co-dependencies around a physical system; the legal and ethical infrastructures of ownership, governance and accountability.

Our personal data flow in systems behind the screens, at the end of our fingertips. Controlled in frameworks designed by providers and manufacturers, government and commercial agencies.

Increasingly in digital discussions we hear that the data subject, the citizen, will control their own data.

But if it is on the terms and conditions set by others, how much control is real and how much is the talk of a consenting citizen only a fig leaf behind which any real control is still held by the developer or organisation providing the service?

When data are used, turned into knowledge as business intelligence that adds value to aid informed decision making. By human or machine.

How much knowledge is too much knowledge for the Internet of Things to build about its users? As Chris Matyszczyk wrote:

“We have all agreed to this. We click on ‘I agree’ with no thought of consequences, only of our convenience.”

Is not knowing what we have agreed to our fault, or the responsibility of the provider who’d rather we didn’t know?

Citizens’ rights are undermined in unethical interactions if we are exploited by easy one-click access and exchange our wealth of data at unseen cost. Can it be regulated to promote, not stifle innovation?

How can we get those rights back and how will ‘doing the right thing’ help shape and control the digital future we all want?

The infrastructures we live inside

As Andrew Chitty says in this HSJ article: “People live more mobile and transient lives and, as a result, expect more flexible, integrated, informed health services.”

To manage that, do we need to know how systems work, how sharing works, and trust the functionality of what we are not being told and don’t see behind the screens?

At the personal level, whether we sign up for the social network, use a platform for free email, or connect our home and ourselves in the Internet of things, we each exchange our personal data with varying degrees of willingness. There there is often no alternative if we want to use the tool.

As more social and consensual ‘let the user decide’ models are being introduced, we hear it’s all about the user in control, but reality is that users still have to know what they sign up for.

In new models of platform identity sign on, and tools that track and mine our personal data to the nth degree that we share with the system, both the paternalistic models of the past and the new models of personal control and social sharing are merging.

Take a Fitbit as an example. It requires a named account and data sharing with the central app provider. You can choose whether or not to enable ‘social sharing’ with nominated friends whom you want to share your boasts or failures with. You can opt out of only that part.

I fear we are seeing the creation of a Leviathan sized monster that will be impossible to control and just as scary as today’s paternalistic data mis-management. Some data held by the provider and invisibly shared with third parties beyond our control, some we share with friends, and some stored only on our device.

While data are shared with third parties without our active knowledge, the same issue threatens to derail consumer products, as well as commercial ventures at national scale, and with them the public interest. Loss of trust in what is done behind the settings.

Society has somehow seen privacy lost as the default setting. It has become something to have to demand and defend.

“If there is one persistent concern about personal technology that nearly everybody expresses, it is privacy. In eleven of the twelve countries surveyed, with India the only exception, respondents say that technology’s effect on privacy was mostly negative.” [Microsoft survey 2015, of  12,002 internet users]

There’s one part of that I disagree with. It’s not the effect of technology itself, but the designer or developers’ decision making that affects privacy. People have a choice how to design and regulate how privacy is affected, not technology.

Citizens have vastly differing knowledge bases of how data are used and how to best interact with technology. But if they are told they own it, then all the decision making framework should be theirs too.

By giving consumers the impression of control, the shock is going to be all the greater if a breach should ever reveal where fitness wearable users slept and with whom, at what address, and were active for how long. Could a divorce case demand it?

Fitbit users have already found their data used by police and in the courtroom – probably not what they expected when they signed up to a better health tool.  Others may see benefits that could harm others by default who are excluded from accessing the tool.

Some at org level still seem to find this hard to understand but it is simple:
No trust = no data = no knowledge for commercial, public or personal use and it will restrict the very innovation you want to drive.

Google gmail users have to make 10+ clicks to restrict all ads and information sharing based on their privacy and ad account settings. The default is ad tailoring and data mining. Many don’t even know it is possible to change the settings and it’s not intuitive how to.

Firms need to consider their own reputational risk if users feel these policies are not explicit and are exploitation. Those caught ‘cheating’ users can get a very public slap on the wrist.

Let the data subjects rule, but on whose terms and conditions?

The question every citizen signing up to digital agreements should ask, is what are the small print  and how will I know if they change? Fair processing should offer data protection, but isn’t effective.

If you don’t have access to information, you make decisions based on a lack of information or misinformation. Decisions which may not be in your own best interest or that of others. Others can exploit that.

And realistically and fairly, organisations can’t expect citizens to read pages and pages of Ts&Cs. In addition, we don’t know what we don’t know. Information that is missing can be as vital to understand as that provided. ‘Third parties’ sharing – who exactly does that mean?

The concept of an informed citizenry is crucial to informed decision making but it must be within a framework of reasonable expectation.

How do we grow the fruits of knowledge in a digital future?

Real cash investment is needed now for a well-designed digital future, robust for cybersecurity, supporting enforceable governance and oversight. Collaboration on standards and thorough change plans. I’m sure there is much more, but this is a start.

Figurative investment is needed in educating citizens about the technology that should serve us, not imprison us in constructs we do not understand but cannot live without.

We must avoid the chaos and harm and wasted opportunity of designing massive state-run programmes in which people do not want to participate or cannot participate due to barriers of access to tools. Avoid a Babel of digital blasphemy in which the only wise solution might be to knock it down and start again.

Our legislators and regulators must take up their roles to get data use, and digital contract terms and conditions right for citizens, with simplicity and oversight. In doing so they will enable better protection against risks for commercial and non-profit orgs, while putting data subjects first.

To achieve greatness in a digital future we need: ‘people speaking the same language, then nothing they plan to do will be impossible for them’.

Ethics. It’s more than just a county east of London.

Let’s challenge decision makers to plant the best of what is human at the heart of the technology revolution: doing the right thing.

And from data, we will see the fruits of knowledge flourish.

******

1. Digital revolution by design: building for change and people
2. Digital revolution by design: barriers by design
3. Digital revolution by design: infrastructures and the fruits of knowledge
4. Digital revolution by design: infrastructures and the world we want

#caredata, care.data, change, empowerment, engagement, health, NHS England, privacy, trust

Driving digital health, revolution by design

This follows on from: 1. Digital revolution by design: building for change and people.

***

Talking about the future of digital health in the NHS, Andy Williams went on to ask, what makes the Internet work?

In my head I answered him, freedom.

Freedom from geographical boundaries. Freedom of speech to share ideas and knowledge in real time with people around the world.  The freedom to fair and equal use. Cooperation, creativity, generosity…

Where these freedoms do not exist or are regulated the Internet may not work well for its citizens and its potential is restricted, as well as its risks.

But the answer he gave, was standards.

And of course he was right.  Agreed standards are needed when sharing a global system so that users, their content and how it works behind the screen cooperate and function as intended.

I came away wondering what the digital future embodied in the NHS NIB plans will look like, who has their say in its content and design and who will control  it?

What freedoms and what standards will be agreed upon for the NHS ‘digital future’ to function and to what purpose?

Citizens help shape the digital future as we help define the framework of how our data are to be collected and used, through what public feeling suggests is acceptable and people actually use.

What are some of the expectations the public have and what potential barriers exist to block achieving its benefits?

It’s all too easy when discussing the digital future of the NHS to see it as a destination. Perhaps we could shift the conversation focus to people, and consider what tools digital will offer the public on their life journey, and how those tools will be driven and guided.

Expectations

One key public expectation will be of trust, if something digital is offered under the NHS brand, it must be of the rigorous standard we expect.

Is every app a safe, useful tool or fun experiment and how will users [especially for mental health apps where the outcomes may be less tangibly measured than say, blood glucose] know the difference?

A second expectation must be around universal equality of access.

A third expectation must be that people know once the app is downloaded or enrolment done, what they have signed up to.

Will the NHS England / NIB digital plans underway create or enable these barriers and expectations?

What barriers exist to the NHS digital vision and why?

Is safety regulation a barrier to innovation?

The ability to broadly share innovation at speed is one of the greatest strengths of digital development, but can also risk spreading harm quickly. Risk management needs to be upfront.

We  assume that digital designs will put at their heart the core principles in the spirit of the NHS.  But if apps are not available on prescription and are essentially a commercial product with no proven benefit, does that exploit the NHS brand trust?

Regulation of quality and safety must be paramount, or they risk doing harm as any other treatment could to the person and regulation must further consider reputational risk to the NHS and the app providers.

Regulation shouldn’t be seen as a barrier, but as an enabler to protect and benefit both user and producer, and indirectly the NHS and state.

Once safety regulation is achieved, I hope that spreading benefits will not be undermined by creating artificial boundaries that restrict access to the tools by affordability, in a postcode lottery,  or in language.

But are barriers being built by design in the NHS digital future?

Cost: commercial digital exploitation or digital exclusion?

There appear to be barriers being built by design into the current NHS apps digital framework. The first being cost.

For the poorest even in the UK today in maternity care, exclusion is already measurable in those who can and cannot afford the data allowance it costs on a smart phone for e-red book access, attendees were told by its founder at #kfdigital15.

Is digital participation and its resultant knowledge or benefit to become a privilege reserved for those who can afford it? No longer free at the point of service?

I find it disappointing that for all the talk of digital equality, apps are for sale on the NHS England website and many state they may not be available in your area – a two-tier NHS by design. If it’s an NHS app, surely it should be available on prescription and/or be free at the point of use and for all like any other treatment? Or is yet another example of  NHS postcode lottery care?

There are tonnes of health apps on the market which may not have much proven health benefit, but they may sell well anyway.

I hope that decision makers shaping these frameworks and social contracts in health today are also looking beyond the worried well, who may be the wealthiest and can afford apps leaving the needs of those who can’t afford to pay for them behind.

At home, it is some of the least wealthy who need the most intervention and from whom there may be little profit to be made There is little in 2020 plans I can see that focuses on the most vulnerable, those in prison and IRCs, and those with disabilities.

Regulation in addition to striving for quality and safety by design, can ensure there is no commercial exploitation of purchasers.  However it is a  question of principle that will decide for or against exclusion for users based on affordability.

Geography: crossing language, culture and country barriers

And what about our place in the wider community, the world wide web, as Andy Williams talked about: what makes the Internet work?

I’d like to think that governance and any “kite marking” of digital tools such as apps, will consider this and look beyond our bubble.

What we create and post online will be on the world wide web.  That has great potential benefits and has risks.

I feel that in the navel gazing focus on our Treasury deficit, the ‘European question’ and refusing refugees, the UK government’s own insularity is a barrier to our wider economic and social growth.

At the King’s Fund event and at the NIB meeting the UK NHS leadership did not discuss one of the greatest strengths of online.

Online can cross geographical boundaries.

How are NHS England approved apps going to account for geography and language and cross country regulation?

What geographical and cultural barriers to access are being built by design just through lack of thought into the new digital framework?

Barriers that will restrict access and benefits both in certain communities within the UK, and to the UK.

One of the three questions asked at the end of the NIB session, was how the UK Sikh community can be better digitally catered for.

In other parts of the world both traditional and digital access to knowledge are denied to those who cannot afford it.

school

This photo reportedly from Indonesia, is great [via Banksy on Twitter, and apologies I cannot credit the photographer] two boys on the way to school, pass their peers on their way to work.

I wonder if one of these boys has the capability to find the cure for cancer?
What if he is one of the five, not one of the two?

Will we enable the digital infrastructure we build today to help global citizens access knowledge and benefits, or restrict access?

Will we enable broad digital inclusion by design?

And what of  data sharing restrictions: Barrier or Enabler?

Organisations that talk only of legal, ethical or consent ‘barriers’ to datasharing don’t understand human behaviour well enough.

One of the greatest risks to achieving the potential benefits from data is the damage done to it by organisations that are paternalistic and controlling. They exploit a relationship rather than nurturing it.

The data trust deficit from the Royal Statistical Society has lessons for policymakers. Including finding that: “Health records being sold to private healthcare companies to make money for government prompted the greatest opposition (84%).”

Data are not an abstract to be exploited, but personal information. Unless otherwise informed, people expect that information offered for one purpose, will not be used for another. Commercial misuse is the greatest threat to public trust.

Organisations that believe behavioural barriers to data sharing are an obstacle,  have forgotten that trust is not something to be overcome, but to be won and continuously reviewed and protected.

The known barrier without a solution is the lack of engagement that is fostered where there is a lack of respect for the citizen behind the data. A consensual data charter could help to enable a way forward.

Where is the wisdom we have lost in knowledge?

Once an app is [prescribed[, used, data exchanged with the NHS health provider and/or app designer, how will users know that what they agreed to in an in-store app, does not change over time?

How will ethical guidance be built into the purposes of any digital offerings we see approved and promoted in the NHS digital future?

When the recent social media experiment by Facebook only mentioned the use of data for research after the experiment, it caused outcry.

It crossed the line between what people felt acceptable and intrusive, analysing the change in behaviour that Facebook’s intervention caused.

That this manipulation is not only possible but could go unseen, are both a risk and cause for concern in a digital world.

Large digital platforms, even small apps have the power to drive not only consumer, but potentially social and political decision making.

“Where is the knowledge we have lost in information?” asks the words of T S Elliott in Choruses, from the Rock. “However you disguise it, this thing does not change: The perpetual struggle of Good and Evil.”

Knowledge can be applied to make a change to current behaviour, and offer or restrict choices through algorithmic selection. It can be used for good or for evil.

‘Don’t be evil’ Google’s adoptive mantra is not just some silly slogan.

Knowledge is power. How that power is shared or withheld from citizens matters not only today’s projects, but for the whole future digital is helping create. Online and offline. At home and abroad.

What freedoms and what standards will be agreed upon for it to function and to what purpose? What barriers can we avoid?

When designing for the future I’d like to see discussion consider not only the patient need, and potential benefits, but also the potential risk for exploitation and behavioural change the digital solution may offer. Plus, ethical solutions to be found for equality of access.

Regulation and principles can be designed to enable success and benefits, not viewed as barriers to be overcome

There must be an ethical compass built into the steering of the digital roadmap that the NHS is so set on, towards its digital future.

An ethical compass guiding app consumer regulation,  to enable fairness of access and to know when apps are downloaded or digital programmes begun, that users know to what they are signed up.

Fundamental to this the NIB speakers all recognised at #kfdigital15 is the ethical and trustworthy extraction, storage and use of data.

There is opportunity to consider when designing the NHS digital future [as the NIB develops its roadmaps for NHS England]:

i making principled decisions on barriers
ii. pro-actively designing ethics and change into ongoing projects, and,
iii. ensuring engagement is genuine collaboration and co-production.

The barriers do not need got around, but solutions built by design.

***

Part 1. Digital revolution by design: building for change and people
Part 3. Digital revolution by design: building infrastructures

NIB roadmaps: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/384650/NIB_Report.pdf

#caredata, care.data, change management, comm consent, commercial, communications, confidentiality, engagement, NHS, NHS England, transparency

Are care.data pilots heading for a breech delivery?

Call the midwife [if you can find one free, the underpaid overworked miracle workers that they are], the care.data ‘pathfinder’ pilots are on their way! [This is under a five minute read, so there should be time to get the hot water on – and make a cup of tea.]

I’d like to be able to say I’m looking forward to a happy new arrival, but I worry care.data is set for a breech birth. Is there still time to have it turned around? I’d like to say yes, but it might need help.

The pause appears to be over as the NHS England board delegated the final approval of directions to their Chair, Sir Malcolm Grant and Chief Executive, Simon Stevens, on Thursday May 28.

Directions from NHS England which will enable the HSCIC to proceed with their pathfinder pilots’ next stage of delivery.

“this is a programme in which we have invested a great deal, of time and thought in its development.” [Sir Malcolm Grant, May 28, 2015, NHS England Board meeting]

And yet. After years of work and planning, and a 16 month pause, as long as it takes for the gestation of a walrus, it appears the directions had flaws. Technical fixes are also needed before the plan could proceed to extract GP care.data and merge it with our hospital data at HSCIC.

And there’s lots of unknowns what this will deliver.**

Groundhog Day?

The public and MPs were surprised in 2014. They may be even more surprised if 2015 sees a repeat of the same again.

We have yet to hear case studies of who received data in the past and would now be no longer eligible. Commercial data intermediaries? Can still get data, the NHS Open Day was told. And they do, as the HSCIC DARS meeting minutes in 2015 confirm.

By the time the pilots launch, the objection must actually work, communications must include an opt out form and must clearly give the programme a name.

I hope that those lessons have been learned, but I fear they have not been. There is still lack of transparency. NHS England’s communications materials and May-Oct 2014 and any 2015 programme board minutes have not been published.

We have been here before.

Back to September 2013: the GPES Advisory Committee, the ICO and Dame Fiona Caldicott, as well as campaigners and individuals could see the issues in the patient leaflet and asked for fixes.The programme went ahead anyway in February 2014 and although foreseen, failed to deliver. [For some, quite literally.]

These voices aren’t critical for fun, they call for fixes to get it right.

I would suggest that all of the issues raised since April 2014, were broadly known in February 2014 before the pause began. From the public listening exercise,  the high level summary captures some issues raised by patients, but doesn’t address their range or depth.

Some of the difficult and unwanted  issues, are still there, still the same and still being ignored, at least in the public domain. [4]

A Healthy New Arrival?

How is the approach better now and what happens next to proceed?

“It seems a shame,” the Walrus said, “To play them such a trick, After we’ve brought them out so far, And made them trot so quick!” [Lewis Carroll]

When asked by a board member: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach? it wasn’t very clear. [full detail end of post]

First they must pass the tests asked of them by Dame Fiona [her criteria and 27 questions from before Christmas.] At least that was what the verbal background given at the board meeting explained.

If the pilots should be a dip in the water of how national rollouts will proceed, then they need to test not just for today, but at least for the known future of changing content scope and expanding users – who will pay for the communication materials’ costs each time?

If policy keeps pressing forward, will it not make these complications worse under pressure? There may be external pressure ahead as potential changes to EU data protection are expected this year as well, for which the pilot must be prepared and design in advance for the expectations of best practice.

Pushing out the pathfinder directions, before knowing the answers to these practical things and patient questions open for over 16 months, is surely backwards. A breech birth, with predictable complications.

If in Sir Malcolm Grant’s words:

“we would only do this  if we believed it was absolutely critical in the interests of patients.” [Malcom Grant, May 28, 2015, NHS England Board meeting]

then I’d like to see the critical interest of patients put first. Address the full range of patient questions from the ‘listening pause’.

In the rush to just fix the best of a bad job, we’ve not even asked are we even doing the right thing? Is the system designed to best support doctor patient needs especially with the integration “blurring the lines” that Simon Stevens seems set on.

If  focus is on the success of the programme and not the patient, consider this: there’s a real risk too many opt out due to these unknowns. And lack of real choice on how their data gets used. It could be done better to reduce that risk.

What’s the percentage of opt out that the programme deems a success to make it worthwhile?

In March 2014, at a London event, a GP told me all her patients who were opting out were the newspaper reading informed, white, middle class. She was worried that the data that would be included, would be misleading and unrepresentative of her practice in CCG decision making.

medConfidential has written a current status for pathfinder areas that make great sense to focus first on fixing care.data’s big post-election question the opt out that hasn’t been put into effect. Of course in February 2014 we had to choose between two opt outs -so how will that work for pathfinders?

In the public interest we need collectively to see this done well. Another mis-delivery will be fatal. “No artificial timelines?”

Right now, my expectations are that the result won’t be as cute as a baby walrus.

******

Notes from the NHS England Board Meeting, May 28, 2015:

TK said:  “These directions [1] relate only to the pathfinder programme and specify for the HSCIC what data we want to be extracted in the event that Dame Fiona, this board and the Secretary of State have given their approval for the extraction to proceed.

“We will be testing in this process a public opt out, a citizen’s right to opt out, which means that, and to be absolutely clear if someone does exercise their right to opt out, no clinical data will be extracted from their general practice,  just to make that point absolutely clearly.

“We have limited access to the data, should it be extracted at the end of the pathfinder phase, in the pathfinder context to just four organisations: NHS England, Public Health England, the HSCIC and CQC.”

“Those four organisations will only be able to access it for analytic purposes in a safe, a secure environment developed by the Information Centre [HSCIC], so there will be no third party hosting of the data that flows from the extraction.

“In the event that Dame Fiona, this board, the Secretary of State, the board of the Information Centre, are persuaded that there is merit in the data analysis that proceeds from the extraction, and that we’ve achieved an appropriate standard of what’s called fair processing, essentially have explained to people their rights, it may well be that we proceed to a programme of national rollout, in that case this board will have to agree a separate set of directions.”

“This is not signing off anything other than a process to test communications, and for a conditional approval on extracting data subject to the conditions I’ve just described.”

CD said: “This is new territory, precedent, this is something we have to get right, not only for the pathfinders but generically as well.”

“One of the consequences of having a pathfinder approach, is as Tim was describing, is that directions will change in the future. So if we are going to have a truly fair process , one of the things we have to get right, is that for the pathfinders, people understand that the set of data that is extracted and who can use it in the pathfinders, will both be a subset of, the data that is extracted and who can use it in the future. If we are going to be true to this fair process, we have to make sure in the pathfinders that we do that.

“For example, at the advisory group last week, is that in the communication going forward we have to make sure that we flag the fact there will be further directions, and they will be changed, that we are overt in saying, subject to what Fiona Caldicott decides, that process itself will be transparent.”

Questions from Board members:
Q: What is it we seek to learn from the pathfinder approach that will guide us in the decision later if this will become a national approach?
What are the top three objectives we seek to achieve?

TK: So, Dame Fiona has set a series of standards she expects the pathfinders to demonstrate, in supporting GPs to be able to discharge this rather complex communication responsibility, that they have under the law  in any case.

“On another level how we can demonstrate that people have adequately understood their right to opt out [..]

“and how do we make sure that populations who are relatively hard to reach, although listed with GPs, are also made aware of their opportunity to opt out.

Perhaps it may help if I forward this to the board, It is in the public domain. But I will forward the letter to the board.”

“So that lays out quite a number of specific tangible objectives that we then have to evaluate in light of the pathfinder experience. “

Chair: “this is a programme in which we have invested a great deal, of time and thought in its development, we would only do this  if we believed it was absolutely critical in the interests of patients, it was something that would give us the information the intelligence that we need to more finely attune our commissioning practice, but also to get real time intelligence about how patients lives are lived, how treatments work and how we can better provide for their care.

“I don’t think this is any longer a matter of huge controversy, but how do we sensitively attune ourselves to patient confidentiality.”

“I propose that […] you will approve in principle the directions before you and also delegate to the Chief Executive and to myself to do final approval on behalf of the board, once we have taken into account the comments from medConfidential and any other issues, but the substance will remain unchanged.”

******

[4] request for the release of June 2014 Open House feedback still to be published in the hope that the range and depth of public questions can be addressed.

care.data comms letter

******
“The time has come,” the walrus said, “to talk of many things.”
[From ‘The Walrus* and the Carpenter’ in Through the Looking-Glass by Lewis Carroll]

*A walrus has a gestation period of about 16 months.
The same amount of time which the pause in the care.data programme has taken to give birth to the pathfinder sites.

references:
[1] NHS England Directions to HSCIC: May 28 2015 – http://www.england.nhs.uk/wp-content/uploads/2015/05/item6-board-280515.pdf
[2] Notes from care.data advisory group meeting on 27th February 2015
[3] Patient questions: https://jenpersson.com/pathfinder/
[4] Letter from NHS England in response to request from September, and November 2014 to request that public questions be released and addressed

15 Jan 2024: Image section in header replaced at the request of likely image tracing scammers who don’t own the rights and since it and this blog is non-commercial would fall under fair use anyway. However not worth the hassle. All other artwork on this site is mine.

#caredata, care.data, choice, genomics, NHS England, research, scope

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

 

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

Simon Stevens, had just said in his keynote speech:

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

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

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

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

“It is essentially, their data.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Looking back or forward thinking?

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

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

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

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

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

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

Patients right to choose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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