Friday, July 20, 2018

PIPCU takedown of 50,000 sites

The Police Intellectual Property Crime Unit (PIPCU), a department of the City of London Police, noted on Twitter that it has taken down 50,000 websites since its inception in 2013. On asking for further details, they advised I send in a freedom of information request which the information officer has now kindly responded to.

My email went to ''

The Freedom of Information Officer
City of London Police
PO Box 36451
182 Bishopsgate
London EC2M 4WN

Transcript of the response (I've put the extracts from my email in italics) -
Dear Mr Corrigan, 
I write in connection with your request for information dated 04 July 2018 in which you seek access to the following information: 
I was really interested to discover, via your Twitter account, that since your inception in 2013, you have taken down 50,000 websites that you believe were committing IP crime. 
I have been advised by the people behind your Twitter account that I should contact you for further details. I would, therefore, be grateful for further information and a breakdown of the detailed statistics you have in relation to these 50,000 websites. 
In particular – 
What proportion of these 50,000 websites proved to be engaged in criminal activities? 
All but one of the sites showed significant evidence of being engaged in criminality. 
What proportion of the 50,000 were not involved in crime and were eventually cleared and re-instated? 
One site has been reinstated as it was not involved in crime. 
How many police officers and police hours were engaged in the investigations that led to the take down of these 50,000 sites? 
The majority of the work is undertaken by one officer working full time (i.e. 40 hours per week since 2014, excluding leave, courses etc). It is impossible to calculate the exact number of hours, particularly as the officer has support from others in the unit. 
Statistics on the extent and seriousness of these crimes. 
No information held. 
The estimated economic impact on affected parties and industries. 
No information held. 
Estimates of the detrimental impacts on the public of the effects of the sale of counterfeit goods through any of these 50,000 websites. 
No information held. 
A demographic breakdown of the geographic locations of the most serious offenders e.g. by jurisdiction (in the assumption that there will be a significant impact from offenders outside of the UK). 
No information held. 
A demographic breakdown of the nature of the offenders e.g. were they organised criminal gangs or individuals? 
No information held. 
The proportion of offenders who were eventually prosecuted and in which jurisdictions. 
Operation Ashiko has not been directly responsible for any prosecutions. 
The proportion of offenders who were eventually convicted and in which jurisdictions. 
Operation Ashiko has not been directly responsible for any prosecutions. 
The proportion of the sites that were involved in selling counterfeit goods.

All sites in respect of this operation are involved in the sale of counterfeit goods. 
The proportion of the sites that were involved in copyright infringement. 
The proportion of the sites that were involved in patent infringement. 
The proportion of the sites that were involved in trademark infringement. 
All sites in respect of this operation are involved in trademark infringement. 
Should you have any further questions regarding your request, please contact me via e-mail, letter or telephone, quoting the reference number above. 

Friday, July 06, 2018

EU copyright directive exchanges with MEPs

Ahead of the EU parliament vote on the proposed copyright directive yesterday I wrote to my 10 MEPs asking they vote against articles 11 and 13, the link tax and the upload filter. Janice Atkinson had indicated in advance of the vote she would be opposing the measures so I thanked her for her stance. The text of my email to the other 9 was -
"I am constituent of yours resident in [redacted]. I also work for The Open University and write about technology policy, though my views below are mine alone and do not purport to represent the position of my employer.

I wanted to briefly encourage you to vote against the copyright directive coming before the EU parliament tomorrow, 5 July, 2018. I have particular concerns about the text of articles 11 and 13 of the directive adopted by the JURI (Legal Affairs) committee on 20 June.

On article 11, you will be aware that this is a new press publishers’ copyright which lasts for 20 years. It has been called a link tax, a snippet tax, a publishers’ right, a neighbouring right and an ancillary copyright. The idea is that anyone linking to and using snippets from news articles would be required to pay the publisher for a licence first. Similar provisions were introduced in Brazil, Germany and Spain and failed to address the serious issue of declining revenues for press organisations. The German law has been referred to the European Court of Justice and in Spain it resulted in a drop in internet traffic to news websites, particularly small and medium newspaper sites, after Google shut down Google news in Spain.

Article 13 is more serious and amounts to implementation of an upload filter for the internet. In principle, one can see why this could be attractive, if it could work as advertised, blocking all the bad things from the internet and letting through all the good. The problem is that there is no magical computer software that can tell the difference between copyright infringing and non-infringing material, except at the crudest level. Computers are good at many things but making decisions about the subtleties of what does and does not constitute copyright infringement is not one of them. Under any plausible filtering requirement, online material which has not usually been thought of as invading copyright would be automatically removed. A software filter is not going to be able to make fair and reliable decisions about what should be permitted to be published. The certain consequence of deploying “effective content recognition technologies”, in the wording of article 13, is that legal material will be blocked and/or taken down.

There has been a lot of heat and not much light generated in the public debate on articles 11 and 13 but in their current form neither is fit for purpose. So I would ask you, as a constituent and an academic who has worked on technology policy for over two decades, to encourage your MEP peers to remove them both from the proposed copyright directive.

Thank you for your time and consideration and if you need any further information do not hesitate to get in touch. In the meantime might I recommend this Statement from European Academics
to Members of the European Parliament in advance of the Plenary Vote on the Copyright Directive on 5 July 2018"
I have had responses from Janice Atkinson, Catherine Bearder and John Howarth. Ms Atkinson confirmed she was doing her best to oppose the article 11 and 13 measures. Mr Howarth's response was thoughtful.
"Dear Ray,

Thank you for writing to me on the changes to Copyright legislation currently before the European Parliament.

I am closely following the debate on copyright which, as someone who ran a creative business for many years, this issue is of long-standing interest to me. I can also tell you, based on my experience, that copyright law with the advent of the digital economy is simple not working.

The debate is complex but the current situation is serving nobody’s interests other than those of the large internet platforms. This is not in any way a sustainable situation and change is clearly needed. In my view that change must address two particular problems and must ensure that several key principles are protected.

It is right that artists and creators are rewarded for their work. This is both a principle and a practical problem with the way the internet has destroyed value in a number of industries. Recording artists in particular but also other creatives have been severely impacted by a ‘sharing economy’ which essentially rips-off their work. In this case the recording companies are also badly affected and the winners are the likes of YouTube. Of course there are also contradictions - recording artists benefit in terms of profile and exposure but ‘profile’ alone does not pay the bills. These concerns are shared by written word publishers and those in other creative fields, though it is also fair to say that I have had representations taking a different view.

Journalism and a free press has to be paid for. Professional journalism, on which a free press depends, is not ‘free’. The decline of newspaper circulation, the changes facing broadcasting organisations and the emergence of news aggregators and search have rendered unviable the business model on which pre-internet media was based. The contradiction is that more people than ever see newspapers in their on-line form, yet again it is the platforms and search organisations that benefit in terms of advertising revenue. If professional journalism is to survive in a sufficiently diverse form to feed a free press (with all its failings) then news organisations need to be able to benefit from their readership. Article 11 would appear to help this situation somewhat.

Free academic enquiry is essential. Academic enquiry necessarily involves the citation of other works. I would be unhappy with any proposition that constrained the ability of academics and researchers to publish and share works and references. Changes have gone some way to assure me that the proposals would not threaten this area, however, their ‘over implementation’ conceivably could. I am concerned that we could exchange one inadequate situation for something even worse.

I have grave reservations about the notion of policing the internet through the application of algorithm and content recognition. I would also be unhappy with the notion of ‘link taxes’ applied indiscriminately.

These are the principles around which I will make a judgement, however, it is fair to say that there are a whole range of other issues that impinge upon the digital economy that cut across the debate on modernising Copyright. The interests of consumers are also important, looking after local cultures and languages have depended upon a localised broadcasting framework matter to many people. The current legislation cannot be reduced to a simple choice.

I am not involved directly with the committees considering this legislation and so have not, as yet, been able to look at the modification made this week in detail. I was far from convinced by what had originally been presented. I would assure you that before I come to vote on this matter I will be discussing the matter with colleagues and considering the implications carefully.

Thanks again for getting in touch.

With best wishes,

John Howarth MEP
On your side in Europe."
I have further responded as follows -
"Dear John,

Thank you for your thoughtful response. It is quite unusual to see a politician showing a nuanced understanding of the complexities of the modern copyright landscape. Though I suspect we might disagree on some of the detailed practicalities, if the public debate on the matter could be conducted at this level, we would all be better informed and the pipe dream of developing evidence based copyright policy might begin to become a remote possibility.


Ms Bearder is keen to find a way to address the issue of fair remuneration for creators -
"Dear Constituent,

Thank you for your email about European Union (EU) rules on copyright.

As you can imagine, I have received thousands of emails about the issue and voted against the copyright proposals because I wanted the European Parliament to better scrutinise them.  I think it is really important the whole Parliament has a real in depth say on this proposal.

My Alliance of Liberals and Democrats in Europe (ALDE) colleagues and I have been concerned about these new Internet copyright rules from the European Commission for some time.  That is why well before the vote I co-signed a cross-party letter about copyright reform and impact on access to news.  The letter voiced concern about the impact of a new neighbouring right for press publishers on access to news and information.  It calls for replacing the current proposal of the Commission by an alternative, less invasive, and more proportionate solution which would continue to support quality journalism and freedom of the press in the digital age.

However, I do think the time has come for creators to get fair remuneration for their work.  That is why the Parliament’s Legal Affairs Committee has backed an update on the current EU’s copyright rules.  The ALDE group managed to secure better protection for right holders’ works and therefore a fair remuneration for creators.  We definitely need to make copyright rules fit for the digital age and should harmonise rules across our Union.  At the same time, we have to make sure that authors’ or performers’ works will be better protected when uploaded on big platforms.  The European Parliament wants to make it now possible to better identify protected works online and therefore ensure that creators receive a fair share for the use of their content.

I do hope the EU does not implement the current copyright proposals and takes time to draft a sensible and measured review of our copyright rules that do not censor the Internet.

Yours sincerely,

Catherine Bearder

Catherine Bearder | Lib Dem member of the European Parliament for the South East of England"
I have further responded -
"Dear Catherine,

Thank you for responding to my email when you have had thousands to deal with.
Ensuring creators receive a fair share for the use of their content is a commendable aim we can all sign up to.
How we go about doing that is the complicated question.
I suspect the regulation of imbalanced industry contracts with creators may be a more effective measure for addressing this problem.
Sensible and measured review of copyright rules is, I agree, overdue and copyright proposals that censor the internet are a destructive option on multiple fronts.
Thank you again.
I wrote an analysis, ahead ahead of the vote, for Crooked Timber, of the proposed articles 11 and 13.

Thankfully the EU parliament, yesterday, essentially rejected the proposed JURI (Legal Affairs) Committee text for the copyright directive. The vote was 318 against to 278 in favour, with 31 abstentions. The Parliament’s position will now be up for debate, amendment and another vote in September.

Tuesday, June 26, 2018

US Supreme Court upholds Trump Muslim ban

The US Supreme Court, in Trump v. Hawaii, has determined, by a slim 5-4 majority, that Trump has the power to ban Muslims entering the US and the ban is justified by legitimate national security concerns.

Justice Kennedy reluctantly went along with the majority opinion, noting that even if the courts didn't have power to review every action of a public official, such officials still have have an obligation to conduct themselves in accordance with their oath to uphold the constitution.
"There are numerous instances in which the statements and actions of Government officials are not subject to judicial scrutiny or intervention. That does not mean those officials are free to disregard the Constitution and the rights it proclaims and protects. The oath that all officials take to adhere to the Constitution is not confined to those spheres in which the Judiciary can correct or even concurring comment upon what those officials say or do. Indeed, the very fact that an official may have broad discretion, discretion free from judicial scrutiny, makes it all the more imperative for him or her to adhere to the Constitution and to its meaning and its promise. 
The First Amendment prohibits the establishment of religion and promises the free exercise of religion. From these safeguards, and from the guarantee of freedom of speech, it follows there is freedom of belief and expression. It is an urgent necessity that officials adhere to these constitutional guarantees and mandates in all their actions, even in the sphere of foreign affairs. An anxious world must know that our Government remains committed always to the liberties the Constitution seeks to preserve and protect, so that freedom extends outward, and lasts."
Justice Sotomayor with whom Justice Ginsburg joined in dissenting, was scathing of the majority, accusing them of ignoring the facts, misconstruing legal precedent and turning a blind eye to the suffering Trump's ban inflicts on countless families and individuals, many US citizens.
"The United States of America is a Nation built upon the promise of religious liberty. Our Founders honored that core promise by embedding the principle of religious neutrality in the First Amendment. The Court’s decision today fails to safeguard that fundamental principle. It leaves undisturbed a policy first advertised openly and unequivocally as a “total and complete shutdown of Muslims entering the United States” because the policy now masquerades behind a façade of national-security concerns. But this repackaging does little to cleanse Presidential Proclamation No. 9645 of the appearance of discrimination that the President’s words have created. Based on the evidence in the record, a reasonable observer would conclude that the Proclamation was motivated by anti-Muslim animus. That alone suffices to show that plaintiffs are likely to succeed on the merits of their Establishment Clause claim. The majority holds otherwise by ignoring the facts, misconstruing our legal precedent, and turning a blind eye to the pain and suffering the Proclamation inflicts upon countless families and individuals, many of whom are United States citizens. Because that troubling result runs contrary to the Constitution and our precedent, I dissent."

Wednesday, June 20, 2018

Tech stole the broadcasters' audience

Dr Johnny Ryan speaking to European broadcasters at EGTA CEO's Summit in Madrid, 2018 from Johnny Ryan on Vimeo.

Johnny Ryan's presentation to the CEO's of Europe's large broadcasters, on the legal risk inherent in their current websites' use of adtech, and how they can join together to use the EU General Data Protection Regulation (GDPR) to grow their businesses, is worthy of a wide audience.

The operation of the hidden personal data processing adtech architecture behind most websites is unlawful. Even though it was largely conceived and deployed surreptitiously, I only hope that history will judge it nothing short of astonishing that we, the general public, technologists, commerce, industry and governments enabled it; and even now continue to do so.

In this regard I also highly recommend Cracked Labs' report on corporate surveillance.
"In recent years, a wide range of companies has started to monitor, track and follow people in virtually every aspect of their lives. The behaviors, movements, social relationships, interests, weaknesses and most private moments of billions are now constantly recorded, evaluated and analyzed in real-time. The exploitation of personal information has become a multi-billion industry. Yet only the tip of the iceberg of today’s pervasive digital tracking is visible; much of it occurs in the background and remains opaque to most of us. 
This report by Cracked Labs examines the actual practices and inner workings of this personal data industry. Based on years of research and a previous 2016 report, the investigation shines light on the hidden data flows between companies. It maps the structure and scope of today’s digital tracking and profiling ecosystems and explores relevant technologies, platforms and devices, as well as key recent developments. While the full report is available as PDF download, this web publication presents a ten part overview. 
I. Analyzing people 
II. Analyzing people in finance, insurance and healthcare 
III. Large-scale collection and use of consumer data 
IV. Data brokers and the business of personal data 
V. Real-time monitoring of behaviors across everyday life 
VI. Linking, matching and combining digital profiles 
VII. Managing consumers and behaviors, personalization and testing 
VIII. Dragnet – everyday life, marketing data and risk analytics 
IX. Mapping the commercial tracking and profiling landscape 
X. Towards a society of pervasive digital social control?"
See also Networks of Control by Wolfi Christl and Sarah Spiekermann, a report on corporate surveillance, digital tracking, big data & privacy. Wolfie Christl is the co-founder of Cracked Labs. Sarah Spiekermann chairs the Institute for Management Information Systems at the Vienna University of Economics and Business.
"The collection, analysis and utilization of digital information based on our clicks, swipes, likes, purchases, movements, behaviors and interests have become part of everyday life. While individuals become increasingly transparent, companies take control of the recorded data in a non-transparent and unregulated way.
In their report, Wolfie Christl and Sarah Spiekermann explain how a vast number of companies have started to engage in constant surveillance of the population. Without peoples’ knowledge a network of global players is constantly tracking, profiling, categorizing, rating and affecting the lives of billions – across platforms, devices and life contexts. While special interest groups have been aware of the corporate use of personal data for a while now, the full degree and scale of personal data collection, use and – in particular – abuse has not been scrutinized closely enough. This gap is closed with this book entitled “Networks of Control – A Report on Corporate Surveillance, Digital Tracking, Big Data & Privacy”.
Based on detailed examples “Networks of Control” answers the following questions:
  • Who are the players in today’s personal data business? How do online platforms, tech companies and data brokers really collect, share and make use of personal information?
  • Which data is recorded by smartphones, fitness trackers, e-readers, smart TVs, connected thermostats and cars? Will the Internet of Things lead to ubiquitous surveillance?
  • What can be inferred from our purchases, calls, messages, website visits, web searches and likes?
  • How is Big Data analytics already used in fields such as marketing, retail, insurance, finance, healthcare and work to treat us differently?
  • What are the societal and ethical implications of these practices? And how can we move forward?
Their investigation not only exposes the full degree and scale of today’s personal data business, but also shows how algorithmic decisions on people lead to discrimination, exclusion and other social implications. Followed by an ethical reflection on personal data markets the authors present a selection of recommended actions."

Monday, February 26, 2018

Proposed immigration exemption in UK Data Protection Bill

Having co-signed an Open Rights Group coordinated letter to EU Commissioners Frans Timmermans, Věra Jourová, and Tiina Astola about the proposed immigration exemption in UK Data Protection Bill, I have now written to my local MP, Layla Moran, on the matter. Copies of both communications below.

Dear Layla,

The UK government are proposing to incorporate an unconscionable clause in the Data Protection Bill, currently going through parliament, relating to immigrants. The immigration exemption provision removes individuals’ right to data protection if it is likely to prejudice “effective immigration control”. This will remove the right of individuals to receive information from a subject access request: a core mechanism in any immigration dispute.

According to the Chief Inspector of Borders and Immigration 10% of immigration dispute cases involved administrative errors, errors that can throw people’s lives into disarray. The Guardian is one of the few mainstream media outlets making any effort to report on the devastating impact of the government’s destructive approach to immigration and has covered stories of numerous people who have been in the UK for, in some cases, decades being deported or threatened with deportation. Some of these have been able to challenge the bureaucratic brutality of Home Office mistakes affecting them. If the proposed immigration exemption clause passes into law in the new data protection legislation it will callously derail the capacity of future victims of Home Office errors to defend themselves.

Along with a number of other concerned academics I have co-signed a letter, co-ordinated by the Open Rights Group, to EU commissioners, Frans Timmermans, Věra Jourová, and Tiina Astola asking that they intercede with the UK government on this matter. Copies have also been sent to Guy Verhofstadt, chief Brexit representative of the European Parliament, and the European Data Protection Supervisor,  Giovanni Buttarelli. I include a full copy of the letter below. It is also available at

The immigration exemption does not belong in the Data Protection Bill. Please use your voice in Parliament to encourage your fellow MPs to ensure it is removed from the Bill.


Ray Corrigan

Concern over United Kingdom’s proposed ‘immigration exemptions’ from Data Protection Bill
Dear Frans Timmermans, Věra Jourová, and Tiina Astola
We, the undersigned, write to express our concern regarding the UK Government’s incorporation of the General Data Protection Regulation into domestic law. Setting aside other areas of concern, the UK’s Data Protection Bill proposes an exemption that would remove individuals’ fundamental right to data protection if it is likely to prejudice “effective immigration control”.
This proposed exemption (‘the immigration exemptions’) will remove the right of individuals to receive information from a subject access request: a core mechanism in any immigration dispute. Further restrictions would remove the government’s responsibility to process an individual’s data in accordance with the principles of data protection including lawful, fair and transparent processing. The exemption would allow data to be shared across UK government institutions without accountability or opportunity for recourse.
The immigration exemptions would potentially leave EU citizens applying for residency post- Brexit without access to their personal data at the most crucial time. As a result, decisions taken about a person’s right to remain which may be based on incorrect information would not be rectified, because individuals would be unable to see that the personal data held is incorrect.
EU citizens could be mistakenly forced to leave the United Kingdom as a result of the immigration exemptions.
Further, the proposed immigration exemptions would appear to violate both the General Data Protection Regulation and the Charter of Fundamental Rights:
- The General Data Protection Regulation Article 23(1) stipulates that any restrictions underthe clause must “respect the essence of the fundamental rights and freedoms and [must be] a necessary and proportionate measure in a democratic society...”.
- Under Article 8 of the Charter of Fundamental Rights every individual in the European Union is entitled to the protection of personal data concerning him or her. This includes the right of access to data which has been collected concerning him or her, and the right to have it rectified.
The blanket immigration exemptions go beyond the necessity and proportionality of restrictions under Article 23 of the GDPR and directly interfere with an individual’s right of access to data, and for their data to be processed fairly under Article 8 of the Charter of Fundamental Rights.
We are concerned about the potential impact the immigration exemptions will have on the United Kingdom’s adequacy when it leaves the European Union. The judgment by the Court of Justice of the European Union in Maximillian Schrems v. Data Protection Commissioner C- 362/14, lays out at para 74 in no uncertain terms, that the practical requirement for adequacy requires:
“ essentially equivalent to that guaranteed within the European Union.”
And at para. 95:
“Legislation not providing for any possibility for an individual to pursue legal remedies in order to have access to personal data relating to him, or to obtain the rectification or erasure of such data, does not respect the essence of the fundamental right to effective judicial protection, as enshrined in Article 47 of the Charter.”
Each of you represent an institution which holds a mandate to protect the interests of EU citizens and uphold the Charter of Fundamental Rights. That mandate includes the respect of these rights by member states.
We believe these proposed exemptions are particularly significant to all EU citizens currently resident in the United Kingdom in maintaining the protection of rights guaranteed to them in the Charter of Fundamental Rights.
We call on you:
- to communicate to the United Kingdom that the immigration exemptions must be removed to secure the compatibility with the essence of the fundamental right to data protection, and the Charter of Fundamental Rights; and
- to examine the exemptions impact on EU citizens’ ability to enforce their residency rights after Brexit under the agreements currently being brokered.
Yours sincerely,
Douwe Korff, Emeritus Professor of International Law, London Metropolitan University and Associate, Oxford Martin School of the University of Oxford
Judith Rauhofer, Lecturer in IT Law, University of Edinburgh
Dr Andrew A. Adams, Deputy Director, Centre for Business Information Ethics, Meiji University, Tokyo, Japan
Anna Fielder, Trustee and Chair Emeritus, Privacy International
Mike O’Neill, Director, Baycloud Systems, The Oxford Centre for Innovation
Marie Georges, Independent expert and member of the FREE Group
Prof Andy Phippen, University of Plymouth
Dr Reuben Binns, Department of Computer Science, University of Oxford
Dr Robin Callender Smith, Professor of Media Law, QMUL Information Rights Judge and former Immigration Judge
Dr Paul Bernal, Senior Lecturer in IT, IP and Media Law, University of East Anglia Law School Milena Popova, Digital Cultures Research Centre, UWE Bristol
Dr. Maureen O. Mapp, Lecturer and Module leader for Cyberlaw, University of Birmingham Law School
Dr Duncan Campbell, Visiting Senior Fellow (Law and Sociology), University of Sussex
Dr. Nicholas J. Gervassis, Lecturer in Law, University of Plymouth
Damian Tambini, Associate Professor, London School of Economics
Dr Sally Broughton Micova, Lecturer in Communications Policy and Politics, University of East Anglia
Vian Bakir, Professor in Political Community and Journalism, Bangor University
Ray Corrigan, Senior Lecturer, Science Technology Engineering & Mathematics Faculty, The Open University
Lilian Edwards, Professor of E-Governance, Law School, Strathclyde University Marian Petre, Professor of Computing, The Open University
Blaine Price, Professor of Computing, The Open University
Andrew McStay, Professor of Digital Life, Bangor University
Marian Petre, Professor of Computing, The Open University
Milena Popova, Digital Cultures Research Centre, UWE Bristol
Note: This letter was sent in copy to Guy Verhofstadt, chief Brexit representative of the European Parliament, and the European Data Protection Supervisor 

Update: In the quickest response I have ever had from an MP, Layla Moran says:

Dear Ray Corrigan,

Thank you for taking the time to email me. In short, I absolutely share your concerns and I am planning on speaking out against them when the Data Protection Bill comes before MPs in a fortnight’s time. I know my Lib Dem colleagues are also in favour of removing this clause.

With best wishes, Layla

Layla Moran MP
Liberal Democrat Member of Parliament for Oxford West and Abingdon

Wednesday, November 29, 2017

Normality and one of the big questions of our age

The Open University's Professor Blaine Price gave his inaugural lecture, Am I Normal, at the OU's Berrill Theatre last night, Tuesday, 28 November.

Recommended watching and listening, it spanned the gamut from the core value of academic collegiality - Blaine repeatedly credited a whole series of named colleagues with the foundations of his successes - to mobile technologies, lifelogging, privacy, health care and what constitutes normality in the data that modern technology generates about us. His answer on the normality spectrum was our normal is unique to us.

Given the rampant, sloganeering, destructive, selfish managerialism wreaking havoc in the academy these days, I was cheered by his attention to the power of collaboration, goodwill, mutual support, respect, recognition and the vocation of working in the public interest.

Amongst the most interesting projects Blaine spoke about were the pioneering pilot studies of joint replacement patients and the monitoring and management of diabetics, through the use of wearable and mobile technologies.

The joint replacement case is a 35 patient study of pre and post operative care and monitoring of pain levels, in association with orthopaedic surgeon, Oliver Pearce, at Milton Keynes hospital.

It's just a pilot study at the moment but the question arises as to how and when to expand such a study to 3,500 or 35,000 or more patients, whilst maintaining respect for and protection of patient confidentiality.

It's a non trivial issue.

There have been a whole series of scandalous examples of mismanagement of patient data in the NHS in the current millennium. Hospital Episode Statistics (HES) processes over 125 million admitted patient, outpatient and accident and emergency records each year. The whole shebang - all patient records since about 1999 - was handed over to a large consultancy firm, PA Consulting, who loaded the data on Google servers outside the UK. The data came on 27 DVDs, took weeks to upload but was easier to play with on Google.  The Blair government's multi billion pound IT disaster, the National Programme for IT in the NHS (NPfIT), is littered with data management blunders.  Cambridge Professor, Ross Anderson, has described the Hospital Episode Statistics data warehouse (which in addition to PA Consulting has been sold to over 1000 economic agents) and the horrendous programme as residing in the 7th circle of hell, as far as lack of respect for medical confidentiality and privacy is concerned. More recently still, the Information Commissioner reprimanded those behind the Royal Free Hospital Trust - Google DeepMind trial which failed to comply with data protection law.

Which all leads us to one of the fundamental questions of our age: should we and if so how do we facilitate the ethical, controlled, secure collection, processing, analysis, sharing, storage, dissemination and use of big data  (such as healthcare data) and the lessons it may have to teach us, in the public interest whilst maintaining/preserving/protecting/enhancing one of the key foundation stones of our humanity and a balanced healthy society, personal and collective privacy?

I'm not sure there are any answers to this, certainly none of the easy variety, though, I again recommend the Nuffield Council on Bioethics report, The collection, linking and use of data in biomedical research and health care:ethical issues. Ross Anderson, who was one of the authors, sums it up neatly:
As the information we gave to our doctors in private to help them treat us is now collected and treated as an industrial raw material, there has been scandal after scandal. From failures of anonymisation through unethical sales to the catastrophe, things just seem to get worse. Where is it all going, and what must a medical data user do to behave ethically? We put forward four principles. First, respect persons; do not treat their confidential data like were coal or bauxite. Second, respect established human-rights and data-protection law, rather than trying to find ways round it. Third, consult people who’ll be affected or who have morally relevant interests. And fourth, tell them what you’ve done – including errors and security breaches.
It's one really helpful collection of principles to bare in mind when thinking about this stuff. But it is just a start and given the rapacious MEGACORP - pick your favorite from Big Tech to Big Pharma to Big Finance & Insurance etc - re-energised corporate feeding frenzy already in play but likely to descend with renewed vigor on the NHS post Brexit, we really should have, long since, been getting our principled legal, ethical, architectural, social, environmental and economic defenses in place.

In the public interest.

Wednesday, October 11, 2017

Open Letter: Withdraw The National Health Service (Charges to Overseas Visitors) (Amendment) Regulations 2017

While I'm on the subject of unnecessary, damaging and costly processes in public services, may I draw your attention to -

This open letter to Secretary of State for Health, Jeremy Hunt, which should be widely circulated. So I hope the more than 1,000 signatories do not mind me publishing it in full here.

It was coordinated by

Doctors of the World@DOTW_UK

Asylum Matters, @AsylumMatters

Freedom from Torture, @FreefromTorture 

National AIDS Trust, @NAT_AIDS_Trust

The Immigration Law Practitioners Association, @ILPAimmigration

Amongst others.


Sir David Nicholson, who was the chief executive of NHS England from 2011 to 2014, is among 1,000 signatories.