All posts by jenpersson

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

 

 

consent, empowerment, engagement, family, National Pupil Database, politics, privacy, pupils

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

****

References:

[1] Nicky Morgan’s full speech at BETT

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

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

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

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

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

#caredata, National Pupil Database, surveillance, transparency, trust

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

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

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

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

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

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

Current practice and Future Proofing Plans

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What does Ethics look like in sharing bulk datasets?

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

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

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

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

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

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

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

In the Public interest is not clear cut.

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

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

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

Pupil data: The Poster Child of Datasharing Bad Practice

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

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

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

(i)conducting research or analysis,

(ii)producing statistics, or

(iii)providing information, advice or guidance,

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

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

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

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

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

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

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

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

They are not mutually exclusive, but enhance one another.

Getting ethics in the right place

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

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

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

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

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

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

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

******

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

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

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

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

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

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

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

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

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

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

Background: Why datasharing matters to me:

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

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

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

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

#caredata, care.data, change management, choice, consent, engagement, genomics, health, HSCIC, NHS England, transparency

Thoughts since #UKHC15. UK health datasharing.

The world you will release your technology into, is the world you are familiar with, which is already of the past. Based on old data.

How can you design tools and systems fit for the future? And for all?

For my 100th post and the first of 2016, here is a summary of some of my thoughts prompted by . Several grains of thought related to UK heath data that have been growing for some time.

1000 words on “Hard things: identity, data sharing and consent.” The fun run version.

Do we confuse hard with complex? Hard does not have to mean difficult. Some things seem to be harder than necessary, because of politics. I’ve found this hard to write. Where to start?

The search to capture solutions has been elusive.

The starting line: Identity

Then my first thoughts on identity got taken care of by Vinay Gupta in this post, better than I could. (If you want a long read about identity, you might want to get a hot drink like I did and read and re-read. It says it’ll take an hour. It took me several, in absorption and thinking time. And worth it.)

That leaves data sharing and consent. Both of which I have written many of my other 99 posts about in the last year. So what’s new?

Why are we doing this: why aren’t we there yet?

It still feels very much that many parts of the health service and broader government thinking on ‘digital’ is we need to do something. Why is missing, and therefore achieving and measuring success is hard.

Often we start with a good idea and set about finding a solution how to achieve it. But if the ‘why’ behind the idea is shaky to start with, the solution may falter, as soon as it gets difficult. No one seems to know what #paperless actually means in practice.

So why try and change things? Fixing problems, rather than coming up with good ideas is another way to think of it as they suggested at  #ukhc15, it was a meet-up for people who want to make things better, usually for others, and sometimes that involves improving the systems they worked with directly, or supported others in.

I no longer work in systems’ introductions, or enhancement processes, although I have a lay role in research and admin data, but regular readers know, most of the last two years has been all about the data.  care.data.

More often than not, in #ukhc2015 discussions that focused on “the data” I would try and bring people back to thinking about what the change is trying to solve, what it wants to “make better” and why.

There’s a broad tendency to simply think more data = better. Not true, and I’ll show later a case study why. We must question why.

Why doesn’t everyone volunteer or not want to join in?

Very many people who have spoken with me over the last two years have shared their concrete concerns over the plans to share GP data and they do not get heard. They did not see a need to share their identifiable personal confidential data, or see why truly anonymous data would not be sufficient for health planning, for example.

Homeless men, and women at risk, people from the travelling community, those with disabilities, questions on patients with stigmatising conditions, minorities, children, sexual orientation – not to mention from lawyers or agencies representing them. Or the 11 million of our adult population not online. Few of whom we spoke about. Few of whom we heard from at #ukhc15. Yet put together, these individuals make up not only a significant number of people, but make up a disproportionately high proportion of the highest demands on our health and social care services.

The inverse care law appears magnified in its potential when applied to digital, and should magnify the importance of thinking about access. How will care.data make things better for them, and how will the risks be mitigated? And are those costs being properly assessed if there is no assessment of the current care.data business case and seemingly, since 2012 at least, no serious effort to look at alternatives?

The finish line? We can’t see what it looks like yet.

The #ukhc2015 event was well run, and I liked the spontaneity of people braver than me who were keen to lead sessions and did it well.  As someone who is white, living in a ‘nice’ area, I am privileged. It was a privilege to spend a day with #UKHC15 and packed with people who clearly think about hard things all the time. People who want to make things better.  People who were welcoming to nervous first-timers at an ‘un’conference over a shared lunch.

I hope the voices of those who can’t attend these events, and outside London, are equally accounted for in all government 2016 datasharing plans.

This may be the last chance after years of similar consultations have failed to deliver workable, consensual public data sharing policies.

We have vast streams of population-wide data stored in the UK, about which, the population is largely ignorant. But while the data may be from 25 years ago, whatever is designed today is going to need to think long term, not how do we solve what we know, but how do we design solutions that will work for what we don’t.

Transparency here will be paramount to trust if future decisions are made for us, or those we make for ourselves are ‘influenced’ by machine learning, by algorithms, machine learning and ‘mindspace’ work.

As Thurgood Marshall said,

“Our whole constitutional heritage rebels at the thought of giving government the power to control men’s minds.”

Control over who we are and who the system thinks we are becomes a whole new level of discussion, if we are being told how to make a decision, especially where the decision is toward a direction of public policy based on political choice. If pensions are not being properly funded, to not allocate taxes differently and fund them, is a choice the current government has made, while the DWP seeks to influence our decison, to make us save more in private pensions.

And how about in data discussions make an effort to start talking a little more clearly in the same terms – and stop packaging ‘sharing’ as if it is something voluntary in population-wide compulsory policy.

It’s done to us, not with us, in far too many areas of government we do not see. Perhaps this consultation might change that, but it’s the ‘nth’ number of consulations and I want to be convinvced this one is intentional of real change. It’s only open for a few weeks, and this meet up for discussion appeared to be something only organised in London.

I hope we’ll hear committment to real change in support of people and the uses of our personal data by the state in the new #UkDigiStrategy, not simply more blue skythinking and drinking the ‘datasharing’ kool-aid.  We’ve been talking in the UK for far too long about getting this right.

Let’s see the government serious about making it happen. Not for government, but in the public interest, in a respectful and ethical partnership with people, and not find changes forced upon us.

No other foundation will be fit for a future in which care.data, the phenotype data, is to be the basis for an NHS so totally personalised.

If you want a longer read, read on below for my ten things in detail.

Comment welcome.

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Hard things: The marathon version, below.
 Continue reading Thoughts since #UKHC15. UK health datasharing. →

privacy

Children’s private chats and personal data lost through VTech toys

If you’ve got young children who have an Innotab console  or other ed tech apps and games from Vtech, then you need to pay attention.

Your and your children’s personal data may have been stolen. The Vtech security breach has exposed private data of more than six million children worldwide, including 700,000 British customers.IMG_3125

The games are designed for children age 2-9. The loss reportedly includes thousands of pictures of children and parents, as well as a year’s worth of chat logs, names and addresses.

Where from? Well, the information that parents and children entered in set up or created using the games like Innotab for example.  The Innotab using an apps allows children to record voice and text messages, take photos and send these to the matching app on the parents’ phone. The data from both users has been lost. The link is the registered email account that connects both child’s toy, and parent’s phone, via the downloaded app.

And why kids’ photos may be included, is that during the set up, a profile photo can be taken by the child, and stored and used in a similar way to social media sites.

VTech’s Learning Lodge app store customer database is affected and VTech Kid Connect servers accessed. As a precautionary step, Vtech says on their website, they have suspended Learning Lodge, the Kid Connect network and a dozen websites temporarily whilst they ‘conduct a thorough security assessment’.

Reactions

One mum spoke to Good Morning Britain about how she felt when she discovered information about her child may have been stolen.

She says she hadn’t received any notification about the loss from VTech and didn’t know about it until she saw it on the six o’clock news. She then pro-actively contacted VTech customer services.

VTech’s response was confused, first telling her they had not lost data related to the KidConnect app – but in a later email say they did.

What’s disappointing in GMB’s coverage they focused in the VTech story on how disappointing this would be for the toymaker VTech in the run up to Christmas.

There was little information for families on what this could mean for using the toys safely in future.  They went on to talk about some other web based tools, but didn’t talk about data protection which really should be much stronger for children’s data.

While parents must take an active role in thinking ahead for our children and how their digital identities can be compromised, we also need to be able to rely on organisations with whom we entrust our own and our children’s personal data, and know that when they ask us for data that they will look after it securely, and use it in ways we expect. On the technical side, data security systems need to be proportionate to the risks they place children in, if data are breached. This is true of commercial companies and public bodies.

On the human side, public transparency and good communication are key to managing expectations, to ensure we know what users sign up to, and to know what happens if things go wrong.

Sadly VTech is continuing to downplay the loss of children’s personal data. In their first statement their focus was to tell people not to worry because credit card details were not included.

When I asked five days after the breach was announced, VTech declined to confirm to me whether avatars and profile pictures had been accessed, arguing that its internal investigation is still ongoing. That’s now two weeks ago.

Their FAQs still say this is unknown. If this is true it would appear surprisingly incompetent on the part of VTech to know that all the other items have been lost in detail, but not profile pictures.

That it is possible for personal details that include date of birth, address and photo to all be lost together is clearly a significant threat for identity theft. It shows one risk of having so much identifiable personal data stored in one place.

The good news, is that it appears not to have any malicious motive. According to the report in Motherboard; “The hacker who broke into VTech’s systems […] that he never intended to release the data to the public.

”Frankly, it makes me sick that I was able to get all this stuff,” the hacker told [Motherboard] in an encrypted chat on Monday.

Could this be the biggest consumer breach of children’s personal data in history?

What now for the 700,000 users of the systems?

Parent accounts need to be directly and fully informed by VTech:

a) what was compromised, by platform, by website, or by customer

b) if and how they will be able to use their equipment again

c) how children’s data would be made safe in future and what Vtech are doing that will different from how they handled data before

Any organisation needs to demonstrate through full transparency and how it acts in the event of such a breach, that it is worthy of trust.

The children’s toys and systems appear to have been shut down.

They’re not cheap with the Innotab coming in at around £90 and its cartridge games upwards of £17 each.  Toy sellers will be in the front line for public facing questions in the shops. Anyone that had already bought these just before Christmas will be wondering what to do now, if access to the systems and the apps have been shut down, they won’t work.

And if and when they do work, will they work securely?

Did Vtech contact you and tell you about the breach?

The sensible thing is to stop using that email address, change the password at very minimum and not only on the adult’s phone and child’s game app, but also anywhere else you use it.

What else do you need to know?

What do parents do when their child’s digital identity has been compromised?

More information is needed from the company, and soon.

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If you want to get in touch, come over and visit defenddigitalme.com You can also sign up to the Twitter group, support the campaign to get 8 million school pupils’ data made safe, or leave a comment.

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References:

VTech website FAQs as of December 3, 2015

November 28, 2015: blog TryHunt.com by Microsoft MVP for Developer Security

December 1, 2015: Motherboard report by @josephfcox

December 1, 2015: Motherboard article by Lorenzo Franceschi-Bicchierai

 

 

 

choice, National Pupil Database, transparency

Access to school pupil personal data by third parties is changing

The Department for Education in England and Wales [DfE] has lost control of who can access our children’s identifiable school records by giving individual and sensitive personal data out to a range of third parties, since government changed policy in 2012. It looks now like they’re panicking how to fix it.

Applicants wanting children’s personal identifiable and/or sensitive data now need to first apply for the lowest level criminal record check, DBS, in the access process, to the National Pupil Database.

Schools Week wrote about it and asked for comment on the change [1] (as discussed by Owen in his blog [2] and our tweets).

At first glance, it sound like a great idea, but what real difference will this make to who can receive 8 million school pupils’ data?

Yes, you did read that right.

The National Pupil Database gives away the personal data of eight million children, aged 2-19. Gives it away outside its own protection,  because users get sent raw data, to their own desks.[3]

It would be good to know people receiving your child’s data hadn’t ever been cautioned or convicted about something related to children in their past, right?

Unfortunately, this DBS check won’t tell the the Department for Education (DfE) that – because it’s the the basic £25 DBS check [4], not full version.

So this change seems less about keeping children’s personal data safe than being seen to do something. Anything. Anything but the thing that needs done. Which is to keep the data secure.

Why is this not a brilliant solution? 

Moving towards the principle of keeping the data more secure is right, but in practice, the DBS check is only useful if it would make data safe by stopping people receiving data and the risks associated with data misuse. So how will this DBS check achieve this? It’s not designed for people who handle data. It’s designed for people working with children.

There is plenty of evidence available of data inappropriately used for commercial purposes often in the news, and often through inappropriate storage and sharing of data as well as malicious breaches. I am not aware, and refer to this paper [5], of risks realised through malicious data misuse of data for academic purposes in safe settings. Though mistakes do happen through inappropriate processes, and through human error and misjudgement.

However it is not necessary to have a background check for its own sake. It is necessary to know that any users handle children’s data securely and appropriately, and with transparent oversight. There is no suggestion at all that people at TalkTalk are abusing data, but their customers’ data were not secure and those data held in trust are now being misused.

That risk is the harm that is likely to affect a high number of individuals if bulk personal data are not securely managed. Measures to make it so must be proportionate to that risk. [6]

Coming back to what this will mean for individual applicants and its purpose: Basic Disclosure contains only convictions considered unspent under The Rehabilitation of Offenders Act 1974. [7]

The absence of a criminal record does not mean data are securely stored or appropriately used by the recipient.

The absence of a criminal record does not mean data will not be forwarded to another undisclosed recipient and there be a way for the DfE to ever know it happened.

The absence of a criminal record showing up on the basic DBS check does not even prove that the person has no previous conviction related to misuse of people or of data. And anything you might consider ‘relevant’ to children for example, may have expired.

DBS_box copy

So for these reasons, I disagree that the decision to have a basic DBS check is worthwhile.  Why? Because it’s effectively meaningless and doesn’t solve the problem which is this:

Anyone can apply for 8m children’s personal data, and as long as they meet some purposes and application criteria, they get sent sensitive and identifiable children’s data to their own setting. And they do. [8]

Anyone the 2009 designed legislation has defined as a prescribed person or researcher, has come to mean journalists for example. Like BBC Newsnight, or Fleet Street papers. Is it right journalists can access my children’s data, but as pupils and parents we cannot, and we’re not even informed? Clearly not.

It would be foolish to be reassured by this DBS check. The DfE is kidding themselves if they think this is a workable or useful solution.

This step is simply a tick box and it won’t stop the DfE regularly giving away the records of eight million children’s individual level and sensitive data.

What problem is this trying to solve and how will it achieve it?

Before panicking to implement a change DfE should first answer:

  • who will administer and store potentially sensitive records of criminal convictions, even if unrelated to data?
  • what implications does this have for other government departments handling individual personal data?
  • why are 8m children’s personal and sensitive data given away ‘into the wild’ beyond DfE oversight in the first place?

Until the DfE properly controls the individual personal data flowing out from NPD, from multiple locations, in raw form, and its governance, it makes little material difference whether the named user is shown to have, or not have a previous criminal record. [9] Because the DfE has no idea if they are they only person who uses it.

The last line from DfE in the article is interesting: “it is entirely right that we we continue to make sure that those who have access to it have undergone the necessary background checks.”

Continue from not doing it before? Tantamount to a denial of change, to avoid scrutiny of the past and status quo? They have no idea who has “access” to our children’s data today after they have released it, except on paper and trust, as there’s no audit process.[10]

If this is an indicator of the transparency and type of wording the DfE wants to use to communicate to schools, parents and pupils I am concerned. Instead we need to see full transparency, assessment of privacy impact and a public consultation of coordinated changes.

Further, if I were an applicant, I’d be concerned that DfE is currently handling sensitive pupil data poorly, and wants to collect more of mine.

In summary: because of change in Government policy in 2012 and the way in which it is carried out in practice, the Department for Education in England and Wales [DfE] has lost control of who can access our 8m children’s identifiable school records. Our children deserve proper control of their personal data and proper communication about who can access that and why.

Discovering through FOI [11] the sensitivity level and volume of identifiable data access journalists are being given, shocked me. Discovering that schools and parents have no idea about it, did not.

This is what must change.

 

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If you have questions or concerns about the National Pupil Database or your own experience, or your child’s data used in schools, please feel free to get in touch, and let’s see if we can make this better to use our data well, with informed public support and public engagement.

********

References:
[1] National Pupil Database: How to apply: https://www.gov.uk/guidance/national-pupil-database-apply-for-a-data-extract

[2]Blogpost: http://mapgubbins.tumblr.com/post/132538209345/no-more-fast-track-access-to-the-national-pupil

[3] Which third parties have received data since 2012 (Tier 1 and 2 identifiable, individual and/or sensitive): release register https://www.gov.uk/government/publications/ national-pupil-database-requests-received

[4] The Basic statement content http://www.disclosurescotland.co.uk/disclosureinformation/index.htm

[5] Effective Researcher management: 2009 T. Desai (London School of Economics) and F. Ritchie (Office for National Statistics), United Kingdom http://www.unece.org/fileadmin/DAM/stats/documents/ece/ces/ge.46/2009/wp.15.e.pdf

[6] TalkTalk is not the only recent significant data breach of public trust. An online pharmacy that sold details of more than 20,000 customers to marketing companies has been fined £130,000 https://ico.org.uk/action-weve-taken/enforcement/pharmacy2u-ltd/

[7] Guidance on rehabilitation of Offenders Act 1974 https://www.gov.uk/government/uploads/system/uploads/
attachment_data/file/299916/rehabilitation-of-offenders-guidance.pdf

[8] the August 2014 NPD application from BBC Newsnight https://www.whatdotheyknow.com/request/293030/response/723407/attach/10/BBC%20Newsnight.pdf

[9] CPS Guidelines for offences involving children https://www.sentencingcouncil.org.uk/wp-content/uploads/Final_Sexual_Offences_Definitive_Guideline_content_web1.pdf
indecent_images_of_children/

[10] FOI request https://www.whatdotheyknow.com/request/pupil_data_application_approvals#outgoing-482241

[11] #saveFOI – I found out exactly how many requests had been fast tracked and not scrutinised by the data panel via a Freedom of Information Request, as well as which fields journalists were getting access to. The importance of public access to this kind of information is a reason to stand up for FOI  http://www.pressgazette.co.uk/press-gazette-launches-petition-stop-charges-foi-requests-which-would-be-tax-journalism

 

#caredata, care.data, National Pupil Database, NHS England, politics, privacy, transparency

Act now: Stand up and speak out for your rights to finding out the facts #saveFOI

The Freedom of Information Act has enabled me to stand up for my children’s rights. It really matters to me. And we might lose it.

For every member of the public, who has ever or who has never used their rights under the Freedom of Information Act laws, the government consultation on changing them that closes today is worth caring about. If you haven’t yet had your say, go and take action here >> now.  If it is all you have time for before the end of today, you can sign 38 degrees petition or write an email to your MP.

Or by the end of today you can reply to the call for evidence. There is further guidance on the Campaign For Freedom of Information’s website. 38 Degrees have also got this plain English version.

Please do. Now. It closes today, on November 20th.

If you need convinced why it matters to me and it should to you, read on.

What will happen

If the proposed changes come to pass, information about public accountability will be lost. Political engagement will not be open to all equally. It will promote an unfair society in which individuals are not only prevented from taking part in full public life, but prevented from understanding decisions made about them or that affect them. Campaign groups will be constrained from standing up for human rights by cost.  The press will be restrained in what they can ask.

MySociety has a brilliant summary.  Michael Sheen spoke up calling it “nothing short of a full frontal attack” on the principles of democratic government. And Tom Watson spoke of three serious instances where facts would have stayed hidden, were it not for access made using the law of Freedom of Information:

1. death rates in cardiac patient care
2. cases when the police use Tasers on children
3. the existence of cracks in the nuclear power station at Hinckley

Why does FOI matter to me personally? In Education.

Because it’s enabled me to start a conversation to get the Department for Education to start to improve their handling of our 8 million children’s personal and sensitive data they hold in the National Pupil Database for England and Wales. Through FOI I asked for unpublished facts how many releases of identifiable personal data of school pupils have been fast-tracked at the Department of Education without panel oversight. And to see the panel terms of reference which are still not on their website.

The request: whatdotheykknow.com
The outcome: National Pupil Database FOI case study summary here.

I’m now coordinating calls for changes on behalf of the 8m children whose records they hold and parents across the country.

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Why does FOI matter to me personally? In Health.

Because Freedom of Information law has enabled public transparency of decision making and accountability of the care.data programme board decision making that was kept secret for over a year. NHS England refused to publish them. Their internal review declined appeal. The Information Commissioner’s Office upheld it.

The current protection afforded to the internal deliberations of public bodies are sufficient given section 35 and 36 exemptions. In fact my case study, while highlighting that NHS England refused to release information, also shows that only a handful of genuine redactions were necessary, using Section 36 to keep them hidden, when the minutes were finally released.

In October 2014 I simply wanted to see the meeting minutes form part of the public record of care.data planning. I wanted to see the cost-benefit business case and scrutinise it against the benefits case that the public were told of at every public engagement event I had been to.  When at every turn the public is told how little money the NHS can afford to spend I wanted scrutiny of what the programme would cost at national and local levels. It was in the public interest to better inform public debate about the merits of the national programme. And I strongly believe that it is in the public interest to be informed and fully understand the intention and programme that demands the use of sensitive personal data.

The request: whatdotheyknow.com
The outcome: care.data FOI case study summary here.

Others could use this information I hoped, to ask the right questions about missing meeting minutes and transparency, and for everyone to question why there was no cost-benefit business plan at all in private; while the public kept being told of the benefits.  And it shows that data collection is further set to expand, without public debate.

Since then the programme has been postoned again and work is in progress on improved public engagement to enable public and professional confidence.

What has Freedom of Information achieved?

One of the most memorable results of Freedom of Information was the MPs expenses scandal. Who knows how much this Freedom of Information Request saved the taxpayers in immeasurable amounts of future spending on duck houses since MPs have been required to publish expenses since 2010? Four MPs were jailed for false accounting. Peers were expelled. Second homes and what appeared to the public as silly spending on sundries were revealed. Mr. Cameron apologized in 2009, saying he was “appalled” by the expenses. The majority of MPs had done nothing illegal but the Freedom of Information request enabled the start of a process of increased transparency to the public which showed where activities, while permitted by law, were simply unethical or unreasonable.

Historical record

Information published under the Freedom of Information Act can help to ensure that important records of decision-making processes are retained as part of the historic background to government.

Increased trust

The right information at the right time helps make better decisions, make spending more transparent and makes policies and practices more trustworthy.

Access to official information can also improve public confidence where public sector bodies are seen as being open. In a 2011 survey carried out on behalf of the Information Commissioner’s Office, 81% of public bodies questioned agreed that the Act had increased the public’s trust in their organisation.

A key argument made by the commission is that those in public office need private space for decision making. The Information Commissioner’s Office countered this in their submission to the consultation saying,

“there is a distinction between a need for a private space, depending on the circumstances and a desire for secrecy across a broad area of public sector activity. It was the latter tendency that FOIA was intended to correct.”

So how much more “private space” do public servants need?

Holding back information

When information that are judged should not be released in the public interest, there are already exemptions that can be applied to prevent disclosure of information under the Freedom of Information Act. [1]

The exemptions include:

  • if the information can easily be accessed by other means – e.g. the internet or published documents
  • if the information is personal information
  • if the information is provided in confidence (but only if legally enforceable)
  • when there is a legal reason not to disclose
  • if the information is about national security, defence, the economy, law enforcement, formulation of Government policy, health and safety, communications with Her Majesty or other royalty, international relations, intended for future publication and commercial interests. (All exemptions in this group must be tested to see if disclosure is in the public interest.)

In addition to these exemptions, organisations can withhold information if it will take more than two-and-a-half days to provide it, or they cannot identify what information is needed (although they have to work with the requester to clarify what is being requested).

They can also withhold information if they decide the request is vexatious.

Does it cost us too much to administer?

Some people who are supportive of these changes say they are concerned about costs in answering requests but have perhaps not considered the savings in exceptional cases (like the Expenses Scandal outcome). And as mySociety has reported [2], money spent responding to Freedom of Information requests also needs to be considered fairly in the context of wider public spending. In 2012 it was reported that Staffordshire County Council had spent £38,000 in a year responding to Freedom of Information requests. The then Director of mySociety, Tom Steinberg, commented:

“From this I can see that oversight by citizens and journalists cost only £38,000 from a yearly total budget of £1.3bn. I think it is fantastic that Staffordshire County Council can provide such information for only 0.002 per cent of its operating budget.”

Why does the government want to make itself less transparent? Even the Information Commissioner’s office has replied to the consultation to say that the Commissioner does not consider that significant changes to the core principles of the legislation are needed. This is a good law, that gives the public rights in our favour and transparency into how we are governed and tax money spent.

How will the value of FOI be measured of what would be lost if the changes are made?

What can you do?

The call for evidence is here and there is further guidance on the Campaign For Freedom of Information’s website. 38 Degrees have also put together this super-easy Plain English version.

To have your say in the consultation closing on November 20th go online.

Or simply call or write to your MP.  Today. This really matters.


References:

[1] Requests can be refused https://ico.org.uk/for-organisations/guide-to-freedom-of-information/refusing-a-request/

[2] MySociety opposes restrictions https://www.mysociety.org/2015/11/11/voices-from-whatdotheyknow-why-we-oppose-foi-act-restrictions/

[3] National Pupil Database FOI case study summary here

[4] My care.data programme board FOI case study summary here

activism, human rights, words

The last steps to safety: helping refugees in transit to Germany. Stories from border town volunteers.

As European leaders meet for the sixth time this year to talk about what to do about refugees, people on the ground are getting stuff done.

Freilassing Hilft, a collaboration of volunteers founded through four friends and a Facebook group eight weeks ago, feeds 1500 different people every day, who pass through the small border town in Germany.

“We’re expecting another 700 more this evening,” Rolf said, volunteering with the separate and long-established charity Caritas at Salzburg’s main station on the other side of the border.

Two “special” trains arrive daily from the south, from Vienna.

Individual men, women and children have become a package – ‘ die Flüchtlinge‘ – refugees – who arrive en masse. From the platforms they are escorted by police and young military service soldiers to segregated areas in the fluorescent lit station concourse.

There they wait.  Standing in an orderly narrow queue between cold aluminum crowd control barriers near the exit at the back of the station.

Chatting and relaxed at both ends of the line, a dozen heavily armed police supervise passing these people on. Dark navy uniforms stand out against the reflective white flooring. Big boots and bigger guns don’t seem a very friendly way to greet up to 1500 people a day who have left behind violence and conflict, with only the possessions they can carry; each with a small rucksack, some with small children.  The children look as mine would after travelling; a little fraught, bewildered and awake in harsh neon at night, when they should be asleep. Most but not all, clinging to a trusted parent. And no crying.

One teen is wandering on her own, looking a little lost, drowning in a turquoise terry towelling  dressing gown that’s too big. I wonder what her story is.

Along the ‘safety’ barricade, white vested volunteers weave back and forth holding out plastic bags of cheese sandwiches and drinks. “Hold them up high,” says Rolf waving 500ml water bottles in the air in his blue, disposable-gloved hands. “If they want them they’ll reach out and take them, you don’t need to say anything.”

There is calm and quiet. There are no words. Tense and tired looking faces nod respectfully to volunteers in appreciation of support. And still they wait for the special buses laid on to bring them across the Austrian-German border, to the small town of Freilassing, seven kilometres away. They will soon be in Germany.

Refugees can only cross the border on these supervised buses. Refugees aren’t allowed on the regular trains from Salzburg any more at all.

Special buses get driven discretely between Salzburg and Freilassing, often in the dark. The town of 16,000 inhabitants has been the checkpoint entry for numbers equivalent to about a tenth of its own population every day since the end of August.

From Freilassing special trains are onwardly coordinated by the Bundesbahn to take the refugees to a scattering of cities across the country. The refugees don’t get told where they are going. That’s deliberate,  said local volunteer, eighteen year-old Jana on the platform in Germany the next morning. She’s the deputy leader of the volunteer group Freilassing Hilft, an organisation founded through four friends’ collaboration in a Facebook group just 8 weeks ago, to give refugees support in transit.

“Some people have specific places they want to reach”, she explained. “They may have family members who they know are in Hamburg for example, and only want to get sent there. It could be upsetting to find they’re being sent somewhere else.”

Berlin, Magdeburg, they’ve been widely distributed, but few helpers know exactly where either.

While most refugees transfer directly from the Austrian buses to German train after registration checks and getting lunch bags from local volunteers, if a train isn’t due straight away they are bussed less than mile away to the Sägewerkstraße centre where they will stay no longer than 24 hours.

Those people who have not yet been registered by police – under tarpaulin awnings on the station platform, or on the bridge the Saarlachbrucke crossing point thirty at a time – go through the registration process at the centre.

In the dry and protected space the men, women and children get some respite, from the weather at least. Donations of winter clothes and shoes are distributed by Caritas volunteers and Freilassing Hilft to those who need them. Medics and professional volunteers can care for health needs. So close to their destination, it can be tense.

Sixty-four year old Kunnikunde joined the Caritas volunteer group in October. A group staffed mainly by pensioners since the students have returned to their studies. She helps distribute the donated clothing inside the former furniture showroom. “Helping them, seeing them smile, afterwards when it is over it is a great feeling, like running a marathon”, she said.

It’s not the same for everyone who works inside though. For the professionals who have been helping for longer, this intensive support is taking its toll. “I see dark faces in my dreams,” one told me. “I can’t forget them.” He sighed, clapped me on the shoulder, as if giving me some sign of solidarity in spirit. I wondered what support he needs and feels able to take, as he gives to others. He pulled on blue plastic gloves each with a professional snap, and went back inside.

The vast building is shut to other outsiders. It has no windows. Security teams patrol the barrier lines, marked off with tape and supported by local police. Whether it’s more to keep people from getting out or others getting in, I’m not sure.

It is not overstatement to say this is the biggest humanitarian disaster Europe has seen since the Second World War and Germany seventy years on, is again redistributing people fleeing war and its effects. As a border town, people in Freilassing have had plenty of experience.

Local feeling is mixed, says Jana. “We have three shifts,” she explained. “All together in the last five weeks we had probably 450 volunteers come and help us. And we get on well with the other organisations. We all work well together, the relationship with the police is very pleasant. But we certainly need to watch that the [public] mood doesn’t change.”

Since I met her two weeks ago, that number has rocketed to over two thousand individuals helping out, some coming to help from miles away.

Their organised management of community spirit is exemplary. They’ve channelled local people wanting to help, into actual donations and distribution of food and drink. An empty concrete floored shell of a shop-under-renovation is their base opposite the station to accept regular donations of thousands of apples, bananas, cereal bars, water, and sandwiches. Volunteers take shifts in the unheated room and bag up packed lunches for distribution to refugees arriving off  the buses. The group has borrowed a handful of supermarket trolleys to take supplies across the road.

Today’s “wish list” on Facebook:

– men’s winter shoes sizes 6+
– Bananas
– White rolls
– Still mineral water 0,5l
– children’s drinks 0,2l
– drawing things
– Babyshoes sizes 19-22
– Baby milk and bottles

“This shift is simply packing the lunch bags for a couple of hours, and we get lots of people if we put out a call,”  Jana explained when I asked how they get hold of what they need. “We can say, we need bananas, and after two hours we have sixteen crates of fruit and then people come along saying, but you have loads, you’re hoarding it. Other times we have nothing and need to use cash donations to buy everything ourselves. Last week we had to go twice a day to the supermarket, but we can’t go to Aldi anymore and just buy up all their stock. We need to pre-order and what we need can change in a matter of minutes. It’s hard to plan with.”

It’s an impressive set up by students who decided they could not simply stand by and do nothing. As we chat two more volunteers come along to register for shifts and Margret, a local mother of three, drops in a huge crate of apples from her orchard.

“What else can we do?” she asks. “You can’t just leave these people with nothing. Unless they felt forced to, they wouldn’t leave. There are families, and young children who are scared, and alone, and they need our help.”

One recent good news story Jana told me, had everyone in tears.

The police helped an asylum seeking Syrian husband in the north of Germany to go south again and reach Freilassing when he heard his wife had managed to escape the war zone one year after he had. Police had escorted him to the Sägewerkstraße, the building now known by the name of its street; enormous open plan furniture warehouse space donated by a local landowner as a staging post for the refugees’ journey. Meeting his wife after a year and two tortuous journeys apart was an emotional experience for them both, as well as all the Caritas charity and Red Cross staff involved. The asylum seeking couple were able to leave together and returned to his new home in the north. A rare good news story. Not all refugees find family or complete the journey safely with family they set out with. Not all refugees are from Syria, and some have traveled for up to two years before this last step to what they hope will be safety.

At the Austrian-German border police now check the ordinary vehicles passing through and ask for papers, a return of the border controls that had been removed in the Schengen agreement. A recent change which taxi driver Andreas is starting to feel has become too much of a burden on residents.

“For our children, or our children’s children, what is the future going to look like? We’ve got our own problems. Poverty, housing the elderly, and there never seems to be money to fix it. But suddenly for refugees, the money’s there.”

That Saturday saw two demonstrations.

One crowd called for support of the border towns, such as Freilassing, just as for the organisations and supporters who are engaging themselves in the work with the refugees. The Caritas Director Pralat Hans Lindenberger said that the refugees also needed to be shared fairly across the German states, as quickly and fairly as possible.

In the counter demonstration many of the attendees were brought in from different parts of Germany, says Jana, with few locals from far right and recognised Nazi organisations.

Supporters are however still signing up to help. While the number of refugees seeking asylum usually falls in winter as seas become more dangerous, this shows no sign of change yet despite or because of the reportedly cut rate crossings offered by the human traffickers.

Others are getting involved to help but to the volunteers it seems ad hoc. This Telekom portal launched today offering multi-lingual support. Long term volunteers will welcome the support tools for the refugees and their own staff.

Helpers and organisations are all calling for central government support.

In the short term, as winter snows may arrive soon, broader cooperation of nation states at government level in funding and manpower is needed in a consistent collaborative approach, as embodied by the Freilassing organisations in the microcosm of the Austrian-German border.

“Basically”, says the Red Cross volunteer, “all our leaders need to lead. Not only ours.”

Everyone is calling for greater leadership from not only the German government and more from Austria, but a collaboration including the UK. When I said I’m from the UK, they laughed. Since Germany takes the same number a day in this small town, as we might in two months time, I’m not surprised.

Austrian ‘support’ is also felt to be cursory, simply passing people on to Germany. No one knows how long goodwill in Freilassing can last. But volunteer numbers still say, ‘refugees welcome.’

Winter has begun. Although more support has been announced it is as yet unclear to the volunteers what it will offer where.

Unless there is safe passage to travel, and shelter at the point of arrival and all along ‘the route of Hope’ from Greece to Germany, the volunteers in Freilassing won’t help as many people as they do today, including the hundreds of unaccompanied children.

In the Alpine cold, many of them will simply never reach the border at all.

This UK response is not enough, not in this Parliament or even next year.

As political leaders prepare to meet in Malta to discuss measures to stem the flow of migrants and refugees from Africa to Europe,  I think of Rolf’s words, “you don’t need to say anything.”  But we do.

We need to speak up, so they hear a million voices of migrants. Speak up so that our leaders know they have the support of many people who want a more positive proactive approach in our population, but are not as vocal as the anti-immigration crowds. Speak up for the children who are still to set sail.

Any further border control agreements must put respect for human rights at their heart, not put more barriers in the way of people migrating or those getting on with grassroots practical support. Leaders must enable refugee routes to safety, and condemn those placing these people in more harm.

These people are survivors. They have not walked there, seen loved ones drown, given up all they know, for the joy of voluntourism. People in Germany laughed at our government’s commitment to take our share of people. It’s the only laugh I’ve heard recently in relation to refugee support.

As Kunnikunde said,“We have big hearts, but our generosity cannot go on forever. We all need to do this together.”

*****
*****

If you want to help make a difference and support refugees through volunteers at the organisation Freilassing Hilft (Freilassing Helps) you can make a regular or one-off donation. This enables them to buy stock according to need and in line with what donors have already provided.

Donations care of the charity:
Verein Europäischer Zwillings- und Mehrlingsfamilien e. V.
Account: VR RB Oberbayern Südost
IBAN: DE 787 109 000 000 002 310 45
BIC: GENODEF1BGL
Purpose: “FreilassingHilft”
The purpose is important so that “FreilassingHilft” gets the donation.

For a receipt of your donation, email: [email protected]. More information: see their Facebook group.

OR consider the Red Cross or the long established local Caritas.

Thank you.

justice payment

Foto credit and story supported by Freilassing Hilft

words

Counting war stories, making remembrance meaningful.

Let’s not make remembrance futile by making the depth of a bow a measure of respect. Measuring deaths in war and war’s wider effects well, should get more emphasis to make a difference for better lives.

Neil Halloran’s data visualisation [1] on war since WWII is really worth a watch. Perhaps it will leave you both horrified and hopeful. He says; “If watching the news doesn’t make us feel hopeful about where we are heading, watching the numbers might.”

Hopeful despite how awful war is today, and how much we ignore, or are ignorant of, because we are in a time of relatively few in-war deaths*. Relative compared with WW1 for example.

The First World War claimed more than 10.5 million battle deaths.

In the size of those numbers, it is easy to lose sight of the individual in war. An exhibition I visited earlier this year in Brighton, managed to restore that, through thirteen intimate stories, at the exhibition: War Stories, Voices From The First World War.

In two low lit rooms visitors were invited to share in the wartime experiences of 13 men, women and children: to see through the eyes of an Indian soldier wounded on the Western Front and cared for in the Royal Pavilion hospital, a Brighton & Hove Albion footballer on the front line, or the gardener imprisoned for his pacifist belief. Echoes of haunting stories of people from the past, backed by Barber’s Adagio for Strings playing softly over the sound system.

Personal letters, diaries, art, photography, clothing, film and memorabilia evoked the love, fear, loss and longing that touched the lives of millions of people.

Lives and deaths that we most often today see simply as data, lost in numbers. The exhibition successfully rediscovered small individual stories from the big data.

“Names, names, forever only names. May you be remembered always, not just as soldiers, but as fragile human beings.”

Visitors could add their own story or message like this one, to the collective exhibition too, by creating a message written on a luggage tag, and tying it to an iron cut out tree.

The majority of messages were from children.

“For my dearest Grandad Private Frederick George Hughes, of the Staffordshire Regiment,” started one.

Some comments were critical and reminded me how personal sacrifice can be remembered down the generations, and how our remembering of the big picture is often selective, and politicised.

“In memory of my Indian ancestors who died in WW1 and WW2, I have not forgotten, like the English history books and politicians have.”

In the same way, what has been criticised today has been highly selective and politicised.

Today, some seem preoccupied with looking at Cameron’s photoshopped poppy or the angle of Corbyn’s bow, at the special Centotaph memorial service rather than  thinking about the reasons we stop to ‘remember’ at all.

We have too little broad public understanding of the ordinary, the now, and the continuing impact of war; or on fixing its effects on the living people in our communities, and those where others live.

We have too little broad public understanding  of the refugee crisis as a side effect of war. The poem ‘For the Fallen’ seems as appropriate for these civilian casualties as servicemen and women:

“They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.” [2]

One line even more fitting than most for those who drown on their route of hope: ‘They sleep beyond England’s foam.’

It can be hard to remember these people as individuals in the mass images we see on the media. We know of some better than others.

In the mass numbers in the refugee crisis it appears the media don’t always use accurate numbers. We cannot reliably know how many refugees are dying or are looking for somewhere, anywhere, safe to go. Measuring and reporting these people accurately [3] matters not only in providing the right services in the right places, but this organisation that admits its own numbers are wrong (double-counting the same people making multiple border crossings) [4] is being given huge amounts of money. We must understand how many people are really being helped though these funds, measure what is done, and what more they need.

We measure another side effect of war badly at home in the UK, those who are often forgotten, the ex-service men and women living on our streets. Homelessness is hard to measure and compare when the government basis of measurement keeps moving. “The bottom line is that we can no longer rely on these figures to show national trends.” [5]

We should be better at measuring these effects of war on society. If we measure situations well, it can help make policy and practical changes more effective, and the support offered, more useful.

We also need to be better at talking about war and its effects. Despite our world class systems in the UK, able to pick up details of all of our internet use, we seem unable to have a collective conversation of our role in wars elsewhere in the world in a transparent fashion. Or accurately measure the effects of action we take in other countries including those that may be unintentional.

Let’s make remembrance count for something. Real remembering means learning lessons. It means getting things done, for living people. It means not only remembering people that died, but why they died: to protect our homes, our loved ones and our freedoms.

*****

References:

[1] Neil Halloran’s data visualisation on war since WWII  http://www.fallen.io/ww2/  – note: *relative is discussed in his visualisation and how he uses in-war and civilian deaths is discussed in more detail.
[2] Laurence Binyon wrote ‘For the Fallen’ first printed in The Times on 21 September 1914
[3] UN refugee numbers http://data.unhcr.org/mediterranean/regional.php
[4] How the EU miscounts migrants http://theconversation.com/seeing-double-how-the-eu-miscounts-migrants-arriving-at-its-borders-49242
[5] http://www.crisis.org.uk/data/files/publications/Homelessness_Monitor_England_2015_final_web.pdf

image source: I walk Cornwall