Caroline Molloy writes for Open Democracy about three amendments on proposed by Professor Allyson Pollock and Peter Roderick: To address concerns and ensure data is available for genuinely medical and public health purposes, the authors have drafted three amendments which they are urging the Lords to adopt: “To keep confidential patient data in the public sector unless commercial organisations have express consent” and can demonstrate data are required for express medical purposes as set out in the law currently; “To put the Caldicott Independent Oversight Panel on a statutory footing with a duty for its advice to be taken into account”, and “To ensure independent or parliamentary oversight of directions to the Health and Social Care Information Centre and the accreditation scheme.” Prof Pollock explains: “These amendments will stop commercial exploitation of patient data and ensure there is proper scrutiny of commercial companies’ activities but they are still not […]

Three crucial safeguards for medical records proposed by leading voices ...

Margaret McCartney, a general practitioner in Glasgow, writes in the British Medical Journal: Why is, the government’s flagship NHS patient data programme in England, floundering? It’s consent, stupid. Most citizens who were asked hadn’t heard of the scheme. Consent to upload individuals’ medical records was sought by sending a leaflet, which was typically lost among a heap of pizza delivery menus. People who had opted out of receiving junk mail did not get it at all. The few who read the leaflet would have found that it didn’t even mention “” Also, it was heavy on assumed benefits (“find more effective ways of preventing, treating and managing illnesses”) but light on potential harms. It did not mention who would handle the data extraction (Atos), that records could be sold to private sector businesses, or the risk of re-identification by third parties and how this would be mitigated. doesn’t care enough about consent

Wendy M. Grossman writes on the Tech President web site: How to destroy public trust in a government open data program in three easy steps: Step 1: Pick a sector that’s maximally sensitive – say, health care – and plan a program to sell the collected data with the stated purpose of benefiting the public good that conflates personally identifiable data with open data and research purposes with commercial exploitation and to which everyone’s records will be automatically uploaded with no ability to withdraw them later. Step 2: Publish conflicting, confusing, and incomplete information about it, omitting details such as deadlines, forms, and processes for opting out. Step 3: There is no step three! This is how the UK government has (so far) mishandled a program called Given the power to do so in legislation passed in 2012, the governing health authority ordered into being at the end […]

England’s Fiasco: Open Government Data Done Wrong

Andrew Rettman and Damien McElroy write in the Daily Telegraph: The European Union’s Court of Justice said an EU law on data surveillance constitutes a “particularly serious interference” with individual “rights to respect for private life”. The court said collection of data to combat crime was a legitimate exercise but that the 2006 rules did not limit the scope of information stored. The ruling marks a victory for privacy campaigners who had argued that the European Union was sanctioning an intrusive regime of snooping across the eurozone. The ruling comes as European leaders face demands for tougher data protection measures following revelations that US spies eavesdropped on continental politicians in revelations leaked by the former NSA contractor Edward Snowden. The court verdict added the existing law’s loose wording means Europeans will feel “their private lives are the subject of constant surveillance” if the measures are left intact. The 2006 “data […]

EU data laws struck down by court ruling

Murad Ahmed and Chris Smyth write in The Times: Google has pulled out of a groundbreaking deal to include NHS data within its search results, blaming a “toxic” backlash against controversial plans to link GP patient records. The internet company had been in secret talks with health chiefs over showing death rates, waiting times and other information in searches for NHS hospitals, with sources saying it feared that the project would be tarred by association with NHS England’s stalled scheme. See here.

Google pulls out of secret deal to show data on ...

Bryan Glick writes in Computer Weekly: The government has formally ended the troubled e-Borders programme, four years after it cancelled a £750m contract for the IT project, although its intended functions have been incorporated into a new, broader project to secure the UK’s borders. Charles Montgomery, director general of the UK’s Border Force, told a meeting of the Home Affairs Select Committee on Tuesday 11 March 2014 that e-Borders had been “terminated”. But Home Office officials were subsequently keen to point out that although the e-Borders name is no longer used, all the intended aims of the programme have been merged into the the Border System Programme (BSP), an initiative launched in January 2013. At the time BSP was put out to tender, the Home Office told Computer Weekly it was separate to e-Borders, but its scope has since been expanded. The e-Borders programme was first commissioned in 2003 to […]

Government finally ends e-Borders programme

Nature has published an editorial on, including some reflections on public confidence in the project: On 19 February, the NHS, which had stubbornly dismissed such criticisms, reluctantly admitted that its critics might have a point, and postponed the launch until the autumn. But the agency still seems to be in denial, arguing that opposition is merely down to problems of communication and public perception. That response is wrong. is far from ready for launch. Incredibly, with just a few weeks to go to the scheduled launch, the NHS had not even laid out in detail which groups would be able to access the data, and on what terms. Thus, the public could not fully know what they were signing up to, raising fears that personal data might end up, for example, in the hands of insurance and other commercial companies. Economic growth is a core goal of any […]

Jon Hoeksma writes in EHI magazine: Health leaders gathered in Manchester for the Healthcare Innovation Expo look set to have their future-gazing overshadowed by the disarray over, after a truly disastrous week for the open data initiative. A fortnight ago, NHS England was forced to announce a six-month delay to the project to link the Hospital Episode Statistics to other databases and make the information available to researchers and others, after a public outcry about the lack of consultation on the plans. But the commissioning board had begun a fight back in defense of the programme, with a major communications campaign promised in an otherwise fraught session at the Commons’ health select committee, and tough new legislation unveiled by health secretary Jeremy Hunt. Despite this, by the end of the week, and its chief architect and champion Tim Kelsey, NHS England’s director of patients and information, was being […]

A bad week in the bunker for

Conrad Quilty-Harper writes for the Daily Mirror: The launch of a controversial database which would centralise access to GP surgeries healthcare records has been delayed from April until Autumn. Why? Let’s start at the beginning, this stuff is quite complicated. What is The NHS wants to share data collected at GP surgeries about individual patients so researchers can find ways to improve healthcare and generally make the NHS more efficient. Since 1989, researchers have been able to request hospital episode statistics including billions of records from hospital visits. will open up the data behind about 300 million patient consultations every year at GP surgeries. The controversial bit is that this involves using identifiable information — like people’s date of birth, full postcode, NHS number or gender — to connect the data together. The NHS says the data is protected, but people are still worried about the implications for […]

Why should you care about

Charlie Cooper writes for the Independent: Controversial plans to trawl patient records from every GP surgery in England have been put on hold, amid concerns from doctors and ministers that the public have not been properly informed about how their private data will be used. The programme, which was scheduled to begin collecting the confidential information from GPs in April, will now be delayed until the autumn, NHS England has announced. The pause will allow the NHS more time to inform people about “ the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to,” officials said. The Department of Health has grown increasingly concerned in recent weeks that NHS England has not sufficiently reassured the public – nor the medical profession – about how the programme would benefit patients. Critics have also warned that the private data, […]

Victory for privacy as NHS database is delayed

Nigel Praities writes for Pulse: A substantial number of GPs are so uneasy about NHS England’s plans to share patient data that they intend to opt their own records out of the scheme, reveals a Pulse snapshot survey. The survey of nearly 400 GP respondents conducted this week found the profession split over whether to support the scheme, with 41% saying they intend to opt-out, 43% saying they would not opt-out and 16% undecided. The snapshot survey gives the first indication of GP opinion over the scheme, and comes as leaflets with information about the programme are in the process of being sent to every household in England.

Over 40% of GPs intend to opt themselves out of ...

The home page of the Austrian government’s e-government web site shows the sort of excitement they hope the people of Austria will have for their ID scheme. Their banner (shown below) is emblazoned with the slogan: “Get yourself activated … get an electronic ID card!” Meanwhile the UK ID web site has gone with a much more sedate: “Everyone’s unique. Let us keep it that way.” After all of the recent data losses perhaps they should use: “Everyone’s unique. Let’s see how long that lasts.”

Austria sets the pace for ID slogans

Henry Porter wrote a powerful piece in today’s Observer, higlighting the horrors of the proposed National Identity Register: The real menace comes when the ID card scheme begins to track everyone’s movements and transactions, the details of which will kept on the database for as long as the Home Office desires. Over the past few weeks, an anonymous email has been doing a very good job of enlightening people on how invasive the ID card will be. ‘Private businesses,’ says the writer, ‘are going to be given access to the national identity register database. If you want to apply for a job, you will have to present your card for a swipe. If you want to apply for a London underground Oystercard or supermarket loyalty card or driving licence, you will have to present your card.’ You will need the card when you receive prescription drugs, when you withdraw a […]

This ID project is even more sinister …