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

February 18, 2014

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.

The first time I used a Mac was…

October 6, 2011

The first time I touched a mac, I remember as clear as yesterday. It was 1984, I was 12, I walked into Cambridge Computer Store on Emmanuel Street in Cambridge, UK. I was hacking assembler on my ZX Spectrum and playing with the BBC Micro at school, so I knew what computers were and were capable of.

There, at the front, was a Mac, with MacPaint, a keyboard, and this funny little box. I’d never seen anything like it. I moved the box, and the arrow moved on the screen. If I pushed the button on the top of the funny little box and moved it, a corresponding squiggle appeared. I clicked the virtual ‘buttons’ down the right, and the ‘brush’ changed. It was a revelatory moment. This was completely intuitive, and changed everything.

I think I drew a willy and walked out of the shop.

4 facts about travelling in Africa (that aren’t true)

February 6, 2011

[I suppose I should disclaim at the beginning that what I’m saying may not be representative of all African trips. My point is that not all African trips conform to the stereotypes. We weren’t adventurers, we were plain and simple independent tourists]

We sat on the banks of the Zambezi river. There were cucumber sandwiches and Pimms. The hotel is an old colonial farm where the farmer murdered his wife in the dining room because he thought she was having an affair with the local priest.
They sound an ‘all clear’ in the morning when the hippos have left the grounds, and we’re warned to stay away from the river’s edge because of the crocodiles.

It was lovely to stay at, but quite the throwback.

We drove 2550km to get here across 4 countries. We camped wild in Botswana, and stayed at various campsites along the way.

Some fun facts that aren’t true about travelling in Africa:

  1. The roads are full of potholes. Nonsense: you can drive from Cape Town to Victoria Falls, 2918km, :

    without hitting a single pothole. (We did the Cape Town to Windhoek leg last year – this year we did Windhoek to Victoria Falls)

    The roads look like this…

    IMG_2971
    and this:

    IMG_3102

    and this:
    IMG_3443

    and this:

    our first elephant

    (there’s an elephant in that last pic!)

  2. The other drivers are dangerous. No, not really. Mostly the roads were totally empty (see above), but we found the drivers in Namibia, Botswana, Zimbabwe and Zambia to be fine. (the same is NOT true in Cape Town, Nairobi, or Lagos)
  3. The police are corrupt and will ask you for bribes. There are police roadblocks outside most major towns, but they efficiently checked our driving licences and destination, and were, without fail, courteous and friendly. No-one asked us for a bribe, intimidated or otherwise acted strangely with us. One policeman in Kasane went well out of his way to help us and make sure we were ok, and I wish I could remember his name and thank him here.
  4. Border crossings take forever and are corrupt. Not our experience. There’s certainly a tendency for bureacracy that is unusual for a European (or at least one from a Schengen country), but if your papers are in order and you have the right fees for importing the vehicle, you’re fine. The border officials we met (at big crossings and obscure ones), were, like the police, courteous, friendly and honest. Here’s the paperwork generated by the 3 border crossings:
    Paperwork for 3 border crossings

    I wish that I was treated as well by the hostile, rude, officious bastards at Heathrow as I was by their equivalents at Kasanguna or Victoria Falls.

Over the years, Kay and I have driven the length and breadth of Europe, across Patagonia in Argentina/Chile, and also big chunks of the western US. I can’t say that I found driving across 5 African countries any more difficult than any of those. The biggest shock for me was how few other tourists there were on the roads, and how empty the amazing campsites and lodges we stayed at were.

I think other people try and play up the african adventurer side of it. Let’s be honest, we’re not. We’re just tourists, but that’s fine.

And the the things we did and saw along the way were pretty amazing:
IMG_2952

IMG_3003-2

IMG_3299

IMG_3250

IMG_3196

You can't see it, but it was raining.

It was one of the best holidays we’ve ever had, and I recommend you come on down and try it.

TechCrunchTV

August 28, 2010

I just did an interview with Paul Carr (formerly of the internet), and @sarahcuda on techcrunchtv, about the Kenyan/African tech scene.

I’m in Nairobi right now; things are especially exciting at the moment. The Central Business District is chaos ahead of the promulgation of the new constitution on Friday (probably already happened by the time I post this), but there’s a whole bunch of really, REALLY exciting things happening:

  1. The big mobile  price war. Last week, Zain (now owned by Bharti Airtel), cut their airtime and SMS tariffs to 25% of the previous, causing the other operators to immediately follow suit. In a country where people spend 50% of their disposable income on their phones, this is a huge deal, and will spark another round of mobile phone innovation and usage. The main point here is that lowering the cost of using technology, lowers the cost of failure; as Clay Shirky says, in turn this lowers the risk of innovation. I believe this will have a big impact on my business, Mocality.com, by making it easier for EVERYONE to use us. Compare these two photos of adverts for Orange’s tariff, taken on the same day;

The pricing is changing so fast, that they can’t even take down the old billboards quick enough!

  • (blowing own trumpet) Mocality hit a big milestone this week – we signed up our 60,000th Nairobi business, making us easily the largest business directory in Africa. Most of our businesses have no web presence other than our listing – I’m very proud to have given so many businesses their first outpost on the internet, and thank everyone involved, especially our hardworking Ambassadors and our network of crowdsourcing Agents. We’re re-launching our website on the 30th August, now actively open for business.
  • Maker Faire Africa is taking place on the 27th and 28th August, here in Nairobi – it’ll be an explosion of local tech innovation.

I namechecked a bunch of internet businesses/projects in Africa that I think are leading the way (although this is nothing like a complete list). Since TV is such a crappy medium for delivering URLs, I’ll list them here:

There’s a great tech scene in South Africa, but I have to say, that I think Kenya eclipses it. Mocality’s country manager, Josh Mwaniki and I  spent Wednesday giving our SA Head of Customer Service a crash course in Nairobi – Ray was pretty astonished at the variety and density of technology retail (phones, PCs, everything) across the city. Mobile tech (retail, M-Pesa, airtime sales) powers commerce in Nairobi like no where else.

Right, more later, I’m off to the Maker Faire party now.

Making iTunes appear for pdfs in the ‘Open With’ contextual menu on Mac OSX

August 26, 2010

iBooks and my iPhone/iPad can read pdfs, but iTunes’ support for pdfs on the filesystem is non-existent. Adding pdfs to iTunes is a pain. I didn’t understand why iTunes.app didn’t appear as an option for opening pdfs in the contextual menu. Note: I do not want to make iTunes the default App for handling pdfs – that would  be crazzzeeeeee.

After much web searching, and more than a little help from some Monkeyz, the answer is this.

  1. Make sure iTunes is NOT running.
  2. Right-click on iTunes.app and choose ‘Show Package Contents’
  3. In the window that opens, open Contents, then open ‘Info.plist’ in a text editor
  4. paste the following
<dict>
<key>CFBundleTypeExtensions</key>
<array>
<string>pdf</string>
<string>PDF</string>
</array>
<key>CFBundleTypeMIMETypes</key>
<array>
<string>application/pdf</string>
</array>
<key>CFBundleTypeRole</key>
<string>Viewer</string>
</dict>

Finally, Rebuild the LaunchServices Database by running the following incantation on the command line.

/System/Library/Frameworks/CoreServices.framework/Versions/A/Frameworks/LaunchServices.framework/Versions/A/Support/lsregister -kill -r -domain local -domain system -domain user
now, right-clicking on any pdf should include iTunes in the contextual ‘Open With’ Menu, so you can add pdfs to iBooks RIGHT THERE:
And people say that macs are obtuse and confusing. pah!

iTunes in the context menu for a pdf file

Young Rewired State

July 19, 2010
Young Rewired State is a multi-city, multi-day UK event to get the best of young UK coding talent mashing up government data and generally encouraging insightful and innovative trouble-making.
From the site:
“During the first week of August, Young Rewired State will again show what groups of talented young coders can do with Government data. Young developers will spend the week at centres held at businesses and organisations across the UK, working with established tech teams, mentors and visiting experts making apps, websites, games and visualisations.
These will then be played back to an awed roomful of Press, government and interested people on the Friday afternoon in London, with pizza, cake and drinks.”
There’s prizes too (one of which I’m incredibly honoured to have named after ME ME ME!)

Barcamp Nairobi 2010

June 12, 2010

Thoughts on #barcampnairobi/wherecamp

P1030636

1. Great turnout – over 600 Kenyan geeks and entrepreneurs, with a healthy sprinkling from the NGO community too.

2. Better gender ratio than I’ve seen at any barcamp in the UK, and any tech event at all in South Africa.

Why is that?

3. If I had a criticism of some of the companies that I see/meet in Kenya, it’s that they don’t focus tightly enough: “we’ve built a social network and a classifieds platform and a game and a dating site” – as Erik said about Ushahidi, technology is 5% and people/growth is 90% (the other 5%? luck.)

Without focus, you’ll never be able to grow your 5 or 10 sites together. Pick the best, put the others in a drawer and dust them off later when the first is profitable or at least has audience and growth.

4. The iHub is a great space. Lovely combo of good connectivity and informality of setting makes it perfect for the barcamp ethos, better than the eBay offices in London or similar corporate venues that I’ve barcamped at. This place is going to be great.

5. Loved the positive reception that Mocality got from everyone here. Really great to hear the feedback.

Location:Nairobi, Kenya

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