On Friday I went to a fascinating lobbying meeting on the new EU data protection regulation. Europe is by default the world’s privacy regulator, as America doesn’t care and no-one else is big enough to matter; so this is really important. Some 3000 amendments have been proposed and the regulation is in the final stages of the committee process; the rapporteurs of the various parties are negotiating compromise amendments which should be ready for a vote within weeks. So the pressure is really on.

Friday was extraordinary because all the lobbyists came together in one room to argue their cases. This is because the liberal shadow rapporteur Alexander Alvaro was injured in a car crash last month, so Sarah Ludford, a London MEP, took over at the last minute. Normally lobbyists see MEPs singly or in small groups, but as time was short Sarah called a mass meeting at Europa House in London. So we all got to hear what the others were pushing for. Campaigners for open government say we’d have better laws if more if the process was public; here’s an example where that happened (literally) by accident.

I am posting my notes of the meeting here, as it’s a good case history of how lobbying works, as well as of how our privacy is being lost. There were about 100 people present, of which only 5 were from civil society. Most were corporate lobbyists: good-looking, articulate and impressive, but pushing some jaw-dropping agendas. For example the lovely lady from the Association of British Insurers found it painful that the regulation might ban profiling that was unfair or discriminatory.

Continue reading How Privacy is Lost →

Regular readers of this blog will have noticed growing issues with medical privacy. On April 24th, a new medical confidentiality campaign will kick off in London.

New legislation that comes into force next month will permit the upload of identifiable patient data directly from family doctors’ records to central systems, from which it will be sold and made available to researchers and private companies. Other developments include the creation of online patient records, and a proposal to create shared record systems across health and social care.

MedConfidential has been formed to deal with these multiple threats to patient privacy, and is hosting its first conference on April 24th in central London. This will be a one-day briefing session to provide details of the new policies and explain their potential impact. The conference is free of charge but places are limited. If you would like to attend, please contact Terri Dowty: terri@medconfidential.org

This afternoon, the Information Commissioner will unveil a code of practice for data anonymisation. His office is under pressure; as I described back in August, Big Pharma wants all our medical records and has persuaded the Prime Minister it should have access so long as our names and addresses are removed. The theory is that a scientist doing research into cardiology (for example) could have access to the anonymised records of all heart patients.

The ICO’s blog suggests that he will consider data to be anonymous and thus no longer private if they cannot be reidentified by reference to any other data already in the public domain. But this is trickier than you might think. For example, Tim Gowers just revealed on his excellent blog that he had an ablation procedure for atrial fibrillation a couple of weeks ago. So if our researcher can search for all males aged 45-54 who had such a procedure on November 6th 2012 he can pull Tim’s record, including everything that Tim intended to keep private. Even with a central cardiology register, it’s hard to think of a practical mechanism could block Tim’s record as soon as he made that blog post. But now researchers are starting to carry round millions of people’s records on their laptops, protecting privacy is getting really hard.

In his role as data protection regulator, the Commissioner has been eager to disregard the risk of re-identification from private information. Yet Maurice Frankel of the Campaign for Freedom of Information has pointed out to me that he regularly applies a very different rule in Freedom of Information cases, including one involving the University of Cambridge. There, he refused a freedom of information request about university dismissals on the grounds that “friends, former colleagues, or acquaintances of a dismissed person may, through their contact with that person, know something of the circumstances of that person’s departure” (see para 30).

So I will be curious to see this afternoon whether the Commissioner places greater value on the consistency of his legal rulings, or their convenience to the powerful.