NHS pulls care.data. WAS: The story behind faxyourgp.com

Breaking News

I hadn’t even finished writing the FaxYourGP launch blog post when the news below hit the Twitters:

Less than 24 hours after the launch of https://www.faxyourgp.com, the rollout of care.data has been delayed by 6 months.

Well, bloody marvellous. I won’t say it was ‘us what won it’, because we were a small little effort on the tail end of some dogged and fantastic campaigning by others, but I’m glad that maybe we were a tipping point.

So we have 6 months to sort this out. Here’s what care.data should do:

• Provide an online, easy to use, secure opt-in/opt-out system, that doesn’t involve unintelligible codes, a burden on GPs, or any other obfuscated funny business. You could do worse than reading gov.uk/service-manual to learn how.
• Opt-in rates will be much higher if you explain the benefits and risks of care.data widely, clearly and honestly. This requires proper investment in communicating with the public over the next six months, not just a jumble sale-style leaflet drop.

I believe there are potential benefits to care.data, but they won’t be realised without an honest discussion with the owners (i.e. patients) of the most personal data there is. This includes listening to and responding to people’s genuine fears, and well as explaining the benefits more clearly.

Once we’ve figured out if these things are happening, we shall decide whether to pause FaxYourGP.

The story behind faxyourgp.com

16 years ago, in 1998, when Tony Blair had just come to power and the year DVDs went on sale for the first time, I was part of a small group of citizen activists who built Stand.org.uk. As part of that campaign we built a web-to-fax gateway so that people could contact their MPs, who at the time were notoriously hard to contact via 20th century email. Partly, it was a joke: ‘haha, MPs still use faxes!’

But it turned out to be quite useful for people, and in 2001, we launched a generic version, faxyourmp.com which in 2005 under the care of mysociety.org evolved into writetothem.com expanded beyond MPs to all tiers of democracy. WTT now facilitates hundreds of thousands of democratic communications each year.

I thought my days of fax-based activism were over more than a decade ago, but imagine my surprise to returning to the UK in January and finding out about this.

Some thoughts and questions about care.data

• Did they really think they could get away with not providing a central opt-out, and that telling people to send code plural9ZZAlpha to their GP would be acceptable, in 2014?
• How can anyone have so little respect for patients or GPs?
• Didn’t they know that, if the NHS was subject to the same laws as businesses, the Information Commissioner would never approve this?
• Did they really think that no-one would step up and challenge them on this?
• Or that by pretending that this trivial thing was so technically difficult, they would only make people more worried about care.data, not less?
• These thoughts were our primary motivation.

Some faxYourGP facts:

• It’s built on the proven, secure, reliable WriteToThem codebase, which has been delivering sensitive citizen communications for over 10 years. It is battle-proven.
• It really did take us a couple of weekends. I haven’t programmed in 10 years, but with a little help from some friends (and the mysociety codebase), it wasn’t hard.
• Our main cost is sending faxes. about 4p each.
• We are very careful to not spam GPs. They use their fax machines for critical activities (hilarious though that might be to the rest of us). So we had to alter the WTT code to send only one fax per day, listing all the patients who wanted to opt out.
• We send faxes because it’s the most reliable way to reach the largest number of GPs. Yes, that is daft in 2014. We can do email too, once we know the GPs are happy with that.