The New Dark Age

16 April 2015 — medConfidential

For years, we’ve had credible reports of highly accurate marketing that could only be based on health records. Now reports in the media have revealed “a nice little trade” in your health records – and that’s the Information Commissioner’s description, not ours.

These latest reports reveal two ways in which information about your health may be collected and sold on: from insurance forms you fill in and, in particular instances, from information provided to “the UK’s largest online pharmacy”, Pharmacy2U.

We have written a more detailed article about this on our website, with information about what you can do and template letters to help you exercise your rights under the Data Protection Act. We encourage you to read the article and, if you have concerns, to take action – and to forward this newsletter, or a link to the article and template letters, on to your friends, family and colleagues as well.

Given the number of people who have contacted us over the past two years about this, it is clear that these are not isolated occurrences. Pharmacy2U may have admitted to selling details to a direct marketing agency on a number of occasions, but it is not the only one.

medConfidential has submitted a formal complaint to the Information Commissioner on behalf of patients who have contacted us after having been sent direct marketing materials in relation to their specific medical condition, treatment or diagnosis. The Information Commissioner’s Office has already begun an investigation, as has theGeneral Pharmaceutical Council.

This trade in people’s personal health information is insidious, and makes it all the more essential that the Government legislates clearly and consistently on the ongoing “commercial re-use” of our medical records; promises to crack down on dodgy data brokers and those who supply them with sensitive personal information ring hollow while the official trade in NHS patients’ information persists.

care.data update

Having initially suggested that only “about a hundred” people were affected by last year’s patient objections screw-up, in a letter published just a few days before Parliament was dissolved before the election, the chair of HSCIC confirmed to the Health Select Committee that at least 700,000 people have been affected by the 9Nu4 / ‘Type 2’ objection problem. medConfidential believes the actual number may be even higher than this.

We understand the Health and Social Care Information Centre is now working to provide a more comprehensive objection process / opt-out than was previously offered. HSCIC has committed to writing to everyone affected when this new opt-out is ready, but NHS England seems to think it can ignore the issue and resume care.data communications before the problem it originally created has been properly fixed.

Though there hasn’t been any sort of official announcement, and a week after telling an MP otherwise, NHS England did finally confirm to a member of the press that the care.data pathfinders will not start until after the General Election. We don’t know when the care.data pathfinder communications will start, or if indeed they will; the new Secretary of State for Health may have something to say about that.

Office of National Statistics Consultation

Thanks to all of you who responded to the Office for National Statistics’ consultation on commercial, speculative and secret access to the unprotected data that it holds, featured in our last bulletin. Well over 500 people made a response via us, with others doing so directly, in a very short time frame.

We expect to meet with ONS over the next few weeks, though this depends on official rules around the election. And we shall, of course, keep you updated on progress – both in this newsletter and via the All But Names website.

How we’re funded

We need your help. We are a tiny organisation, with minimal funding – and our salary grant from the good folks at the Joseph Rowntree Reform Trust runs out at the end of this month. Because of the nature of the work we are doing, and the fact that we must remain independent, our only other source of income is your donations.

If you can help us, please do. Every pound received will be spent trying to avert the most shocking systematic breaches of medical confidentiality and ensuring that in future every flow of your most sensitive information into, across and out of the NHS and social care system is consensual, safe and transparent.

Please make a donation via our PayPal page – if you can afford it, a regular amount is most helpful.

And don’t forget to pass on this newsletter to your friends, family and colleagues, so they can take action on the sale of their health information to direct marketers. They can receive future bulletins by joining our mailing list athttp://medconfidential.org/contact/

Phil Booth and Sam Smith

medConfidential

17th April 2015