I used FaxYourGP to opt out of care.data.

Update below

Fax Your GP care.dataFor a couple weeks, Radio 4’s PM has been sharing dreadful worries over care.data, an NHS initiative to collate our medical records into a single database. Every caller I’ve heard has complained, and is scared about their data. My own reaction is conflicted.

I used to work as an evangelist for a company that advocated open data. I believe that opening up data tends to enable progress. You know that quick-fire game where you say the first thing that comes to mind? If you said: “open data,”

I would say: “accountable government,” or “better research.”

Actually, I would probably say: “wait, what?” – I’m not as eloquent in real life without a text editor.

Also, a hero of mine, Ben Goldacre, wrote about care.data, pointing out that this data could absolutely save lives.

We learn how to save lives by studying huge datasets on the medical histories of millions of people. This information helps us identify the causes of cancer and heart disease; it helps us to spot side-effects from beneficial treatments, and switch patients to the safest drugs; it helps us spot failing hospitals, or rubbish surgeons; and it helps us spot the areas of greatest need in the NHS.

He highlights some of my conflict by saying that there are problems with the way the scheme has been launched, and it hasn’t taken into consideration the concerns we have about privacy, security and access. Dr. Goldacre concludes that we should watch and wait before opting out.

But I have decided to opt out of care.data, and tweeted about it quite strongly.

This is why.

They haven’t told me enough about who gets access to my private, medical information.

All the information you need to make your decision about whether you want to opt out of care.data is in a leaflet (link to pdf). And it says:

We will use information such as your postcode and NHS number to link your records from these different places. Records are linked in a secure system so your identity is protected.

Then, it says:

We sometimes release confidential information to approved researchers, if this is allowed by law and meets the strict rules that are in place to protect your privacy.

So, wait: Who are these researchers? When has this happened in the past? Who are the researchers you have in mind for the future? If I find out you’ve sold a bunch of care.data to a private company, will I be able to opt out then?

It doesn’t say.

In other news, The NHS sold health record information to a big insurance company.

Dr. Goldacre talks about health insurance concerns with care.data being a bit of a red herring. If you have private health insurance, you give them access to your records anyway. Right, but this is a different kettle of herring. I don’t trust the NHS not to sell this data to companies who exist to make a profit – because that is a fundamental conflict of interest. I don’t have a problem giving my own medical insurer (disclosure: I haven’t got any private health insurance) my medical history. But I do have a problem giving an unknown corporation access to my info.

Care.data risks are not laid out.

Information will be “pseudonymised,” which means that each record will be given a fake name. So Joe Bloggs will have the same medical history as me, but won’t be called Zach.

But, pseudonymised data has risks (read about inference attacks). It is possible (and it’s been done) to work out the link between a pseudo-human and a real person.

I also wonder what the leaflet says it will do to make sure the data is securely stored. Hmm…

We are very careful with the information and we follow strict rules about how it is stored and used, and have a thorough process that must be followed before any information can be shared.

Oh, that’s fine then. They promise to be careful with it.

So, I have a quick search for “NHS data leak.” What I find is story after story of bad things done with data by the NHS.

Is this a fair assessment? No. It’s a search of news stories using a leading query. Sorry. But I want to know about this. I want to know how the NHS will keep care.data safe, secure and out of the hands of unknown people.

From the way I understand it, the risks of data breaches or inference attacks tend to be small for most individuals. But they are not covered by the NHS Leaflet.

Opting out is the only stone I have to throw, isn’t it?

I want the NHS to look at its data more thoroughly. I want them to be able to do deep, important meta-analyses on health records, outcomes and practices. I want them to save lives through data.

But I don’t trust the way they’ve set up this scheme, and there doesn’t seem to be a better option than to opt out.

The scheme to put the data online has been delayed for 6 months, following criticism from some important bodies (like The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England).

Dr. Goldacre asks us to hold fire on opting out. Wait until closer to the time, and see what happens. But I’m not a GP (Ben is), I’m not a columnist (ditto), nor am I a member of a watchdog (I don’t think owning a spaniel counts, right?) I feel that my opt-out is as close to a protest vote as I’ve got.

Alongside this, a lot of people will forget to re-open the issue in 6 months. People collectively forget things – even important things. I think waiting is a bad idea because of this.

So, I used Fax Your GP to opt out.

Update, it looks like Ben Goldacre thinks it’s too much of a mess now.

Media Temple was great, but No to GoDaddy

Media Temple (mt) have looked after this site’s hosting superbly. They handled problems (all of which were down to user error) promptly and with a bit of extra care. Under almost all circumstances, I support companies who work hard for their customers’ loyalty. But, they were bought by GoDaddy.

GoDaddy has an impressive reputation for chauvinism, playing on stereotypes, and generally mocking people.

No, seriously:

and…

(video has since been deleted, but you can search YouTube for GoDaddy commercials to get the gist.)

I think you get the picture. In fact, sorry for the pictures. I feel dirty having them on my site, and I feel worse thinking that my hosting money would be supporting such a company.

More troublingly, GoDaddy played a big role in supporting SOPA. Yes, they backed down, and stopped their support… eventually. But that’s a big mark against any company.

(mt) were quick to point out, on Twitter, that they’ve taken the acquisition seriously – that GoDaddy has reinvented itself. Maybe they have; maybe they will. But they’re the same company, and they make me feel sick.

Their FAQs point out the reasons they went along, and say they’ll stay an independent, autonomous company. I wish them the best, but no. Between casual chauvinism, mocking “nerds”, and generally seeking profit above freedom – it was an easy decision to make.

Honestly, I didn’t feel there was a decision to make except on finding a new host.

For now, I’ve moved my online property over to UK-based TSOHost, on the recommendation of quite a few twitter friends. They migrated my site and domain on the same day, and seem pretty clued up on support so far. I have a few remaining domain names with (mt), one of which – mentaldemocracy.com – I might sell. The rest, I’ll either transfer over next week, or simply wind them up.

This is the shape the wood wants to be

photo of a green-carved kuksaBirch smells amazing while it’s still green.

It is easier than I thought, shaping half a log into a bowl. It is harder than I thought possible to finish a simple curve with a straight blade.

Countless generations have carved necessary items out of wood. It was the material to hand, and a few good blades with a couple flat stones could be found in even the poorest houses. There is a certain feeling of chicanery in making decorative objects out of waste wood. Is my use of spare time and making a hobby out of spoons a mockery of my ancestors’ need?

But I can think when my hands are busy. My fingers learn through the strokes and grips, and I can see the object in a block before picking up the axe.

I say things like: “This is the shape the wood wanted to be.”

It’s foolishness, but I know what I meant. It’s hard to express in words on a screen — my non-hobby, necessary job — the essence of something my eyes and hands have learned as my mouth and keyboard are silent.

Pushing and pulling steel through bits of tree gives me space to think and just be still.

This post originally appeared on medium.com

When I just can’t, Just Type

This spring has been an interesting season. Often, I put words up on a screen to make my thoughts make sense. If I can organise the paragraphs into something resembling a coherent piece of writing, maybe my own plans and priorities can follow.

I use a tumblr blog for many of these unpolished pieces, and I give myself a simple rule: Just Type.

I allow for correcting misspellings, and a light pass for punctuation, but I don’t allow myself the chance to edit the actual content. If it’s potentially libellous or too personal: it’s deleted.

Today, I couldn’t even just type. I couldn’t organise my thoughts into words.

Screenshot of iA Writer Zen ModeI did manage to procrastinate, and create an automated workflow for my Mac. From now on, whenever I feel ready to just type, I press: ⇧ ⌘ J. I am greeted with the beautiful iA Writer‘s Zen Mode asking me to “Just Type.”

It’s a simple Alfred 2 workflow I’ve made available on github. It’s a hotkey and AppleScript, which opens iA Writer, inserts the text “Just Type,” and puts iA into Zen mode, giving me a big, blank space to type into.

The Workflow is only two steps, and it’s trivial to change the hotkey. By modifying the AppleScript, it would also be very simple to change the application, the prompt text, and the zen-mode.

So, instead of trying to organise my thoughts, I organised a few files on my hard drive and pushed them to github.

If you’re interested, the AppleScript goes:

All change

All change…

For the past decade, my wife and I have been very busy, and constantly shifting. I emigrated, and started university. We were learning how to live together and be a couple, and survive Central London.

We did a lot of moving. University ended, jobs started. Jobs changed. Jobs ended. Minuscule flat in Kings Cross to run-down outskirts of Hatfield, to the friendly Herts village of Markyate, to the incredibly beautiful brace of houses in Ludlow. Then Northampton, then Yorkshire…

We both want to find a rhythm which works for us, and to have a place to feel is a base on which to begin adventures – to be less itinerant.

It seems that 2013 is not going to be that year.

Kickstarting Home Espresso: ZPM Nocturn

Update

ZPM’s espresso machine Kickstarter project failed to produce the machine.

What follows is the original interview, published back in March, 2013:


ZPM Espresso Nocturn MachineZPM‘s Gleb Polyakov and Igor Zamlinsky introduced me to Kickstarter through their Nocturn espresso machine. I’m geeky enough to know what a PID controller is, and why that’s something £5k+ professional machines tend to have under their shiny bonnets. When a friend sent me a link to their Kickstarter project, I quickly joined the—now immense—throng of backers. Following their webby approach to design and engagement, their startup-mentality, and the ultimate goal of bring professional-grade espresso home, the Nocturn sits soundly on the girders of my writing interests.

The ZPM team were happy to answer some questions I had for them, and ended up telling me a very compelling story, which I’d like to share with you.

1. I understand the Nocturn to be distinctly different from most other home espresso machines. Where do these differences lie, and what makes these important?

It’s first important to know that there’s been very little advancement in the way of manual and semi-automatic espresso machines—especially in home machines—since the first pump-driven E61 machine was introduced in 1961. Huge commercial machines have been refined to provide more temperature stability and pressure consistency, but home machines never really caught up despite a growing community of at-home espresso lovers and increases in our knowledge of what you need to make good espresso.

Even without major modifications in design, home machines that make solid espresso are really expensive. And that’s what really got us thinking about the problem. We were college students; we loved espresso; but we couldn’t afford a $1000+ home machine that would make truly good, reliable espresso. We could, however, buy a bunch of (very) used espresso machines off of Craigslist, tear them apart, see what made them tick, then Frankenstein them back together to try to make one that worked better. It started to look like we could do a better job for less.

We approached it as an engineering problem, not a coffee problem. What do you need to make great espresso? Tightly regulated temperature and pressure. Well, gee, we could do that.

The major innovations were replacing the mechanical controls typically used with digital controls, and controlling everything digitally with a native PID control loop. Once you had that in place, you didn’t need to rely on a huge hunk of expensive metal for your thermal stability, you could use a much less expensive aluminum thermoblock, and it would actually perform better because you could implement controlled temperature changes over the course of a shot, and your brew water volume wasn’t limited to the preheated boiler water.

In the past, thermoblocks have been the mark of a cheap machine, but by redesigning the block to improve its thermal properties, and improving the control mechanism, we’ve been able to make our block outperform home boiler machines. We’ve also implemented a pump control mechanism that provides the first-ever pressure control system in a home machine, which contributes to the shot repeatability.

Espresso is a game of controlling and manipulating variables, and we’ve just done that better than anyone else in our price range.

2. With all of these differences, for what kinds of home brewers is the Nocturn designed?

IMG_9612We’d like to think it’s designed for everyone. Our goal was to make a machine that produces truly exceptional espresso—the kind you get with thousands of dollars of investment in a home brew setup—and make it at a price point that is as attractive as possible.

We also know that espresso can be kind of intimidating to a lot of people. We hated the idea that people might be put off getting into the whole culture of making and exploring espresso because they were scared of messing up or didn’t want to invest in an expensive setup only to find that it wasn’t for them.

One of the core guiding requirements of the design has been that you have to be able to unpack it from the box, turn it on, press one button and make some decent coffee.

The addition of a full-color LCD and intuitive GUI also enables users to easily adjust temperature and pressure settings which, historically could require breaking open the machine and manipulating a mechanical check valve to change pressure! The screen was a response to the fact that we had a ton of backers who were choosing the Nocturn to be their very first home machine. We wanted to do our best to combine ease-of-use with complex features—after all, we didn’t make all of this variable control so people could just pull shots at 95˚C and 9 Bar for the rest of their lives!

Ideally, our machine is straightforward enough for the beginner, but offers the complex features that will allow an expert home barista to play around with. So many other machines in this price point are meant to be ‘starter’ machines, with the expectation that you’ll eventually want to upgrade to something more expensive. We think this machine has everything you need to fully explore your coffee. At the same time, it’s a great learning tool because of the consistency—it’s very hard to improve your technique when you have no idea whether the problem is you or the machine.

3. So, tell me about Kickstarter: what lead you to decide on funding the Nocturn’s development through online startup backing?

It was mostly serendipity. We were getting to a point where we thought we had a design that could really change the market, but it was starting to cost too much for us to keep pursuing on our own without knowing whether anyone else shared our interest.

Kickstarter was kind of ideal for us in that the all-or-nothing funding model provided the proving ground we needed. We knew how much capital we needed to do a very small beta run of hand-built machines based on our core design. Either we’d make that amount and move forward, or we wouldn’t and we could stop wasting our time.

We weren’t originally expecting to raise anywhere near what our funding total ended up being. The original expectations was just that we’d be able to fund a lease on the necessary equipment.

4. How have you found the process of funding and developing in full view of your potential market?

I think the most interesting thing has been the way that crowdfunding throws the typical product development process on its head. Normally you have to do rounds of funding, build a company, do tons of marketing, and build an ad campaign before you introduce yourself to your market. That process has a certain structure and familiarity to it, but it also has a pretty high entry barrier for teams like ours—and others who turn to crowdfunding.

That said, the price you pay is this: rather than experiencing all the growing pains of a project like this behind closed doors, you’re all of a sudden accountable to a big group of people who’ve backed you and are now expecting delivery. Recently there have been a bunch of stories relating to how this stress is starting to get to a handful of project creators who had wildly successful projects, but found themselves struggling with different aspects of their projects—not just with completion, but with the emotional stress that a big group of angry backers can apply. Normally you have a customer service buffer between the engineer or artist who created something and the customers that might complain about it. With Kickstarter, because the teams are usually just a few people, all of that internet trollery can really start to wear on you, especially when you’re already losing sleep over a project that you’ve put your heart and soul into.

I think that, a year ago when we started the project, Kickstarter was blowing up and everyone was having the problem of ensuring that people understood the “Kickstarter is not a store” idea, which created a lot of anger on the part of confused backers, and stress for the creators of really popular projects.

We’ve been really lucky to have a group of backers who have been exceptionally supportive and patient throughout the whole process. We’ve done our very best to be completely transparent whenever we experience setbacks, both in our updates and in individual correspondence (as anyone who has dared to send us an email probably knows, I can be obnoxiously verbose). We’ve tried to get backers in on the incredibly complex process of manufacturing a consumer product, and we think that’s part of the fun of backing projects – what challenges will you face, and how will you overcome them?

Hopefully the result is that people feel an emotional connection to the product they helped create, and walk away with a better understanding of how this type of thing gets made.

5. Have you any advice for other startups?

Ha! Celebrate the little victories. Our problem (and I think a common one) has been that we’ve had a lot of setbacks, and they can start to make you feel so down that you forget why you set out on this crazy adventure in the first place.

We have a working machine now. It still has some kinks to be worked out, but we made cappuccinos this morning. That’s exciting!

Some advice we got after we’d already been funded: “Take the timeline that your engineer gives you and triple it.” We thought, “Not us, not our engineer…” We all know how that turned out.

No matter the project, take your timeline and triple it.

6. Back to coffee, what was the last coffee you brewed at home?

Since we just took a trip to Batdorf & Bronson to do a machine demo, we’re loaded up on their beans right now. I think this morning we brewed the B&B Dancing Goats.

7. OK, tell me: how good is the coffee from the Nocturn? Be honest…

When we demoed the machine at Batdorf the other day, the response we were getting was that the shots we were getting where on par with their PID’d La Marzocco Linea (a $12,000 commercial machine), and that it was hands-down the best home machine they’d ever used. And this coming from people who know their stuff when it comes to coffee.

8. Finally, have you any new projects on the horizon for ZPM?

We’ve got a few ideas in mind. Our machine offers significantly more value than anything on the market with the same quality and features, but we’d like to work on another model that’s even more affordable – by making some key design modifications (like replacing the steel shell with plastic and eliminating the screen) – basically taking away anything that’s not directly involved in making great espresso. The accessibility of great espresso is a really important part of this project to us, and we think we can still push further on that front.

We’re also working on a model that can do simultaneous steam and brew—as that’s probably the most common request we’ve gotten since the campaign.

We’ve also got a dozen ideas for little coffee-related gadgets that need to be worked through.

ZPM LogoIf you would like to follow-up on this interview, you can comment below, or drop ZPM a line on: info@zpmespresso.com.

Images used with kind permission of ZPM Espresso who retain all rights to the images which are not licensed for redistribution.

Cycling: I cannot know your context

photo of the hills fit for cycling
The perfect place for cycling

It is cold.

I have just decided to carry on, trying to ignore the tightness in my chest, and the retching tickle at the back of my throat that says one thing: “Cough!”

My ears are already tingling.

“We are the Hellequin,” I pick up the dialogue from a new audiobook. It had faded as I climbed the first hill on my cycle route, which gets steeper toward the top in reality and imagination; and I began to question whether I can make it. I have been trying to count the number of times I had climbed this hill, and I picture the road at the top to prove that I had indeed been up here on two wheels before.

My nose is already running.

Today, the hill is steeper in imagination, and my breath is shorter than normal. It’s the first day in a week I have been well enough to do any exercise, thanks to a seasonal cold.

HEY!

A loud noise: a car’s horn

FAT!…

cough

STRAIGHT!

cough

SHIT!

cough

A light colour flies past my right hand—the bonnet of a car within a foot of my front wheel.

STRAIGHT

cough

A laughing face and a waving fist.

… straight.

cough

I hear the horn again, and realise it’s a Ford Ka: full of lads’ faces and Adidas jackets. Then I’m in paroxysms as I kind of start to work out that it’s bloody amazing I haven’t fallen off. I stop pedalling, ditch the bike and cough until I retch for a bit.

I can’t decide whether I’d shouted the word straight aloud, or if it was just the only thought in my head. I’m pretty sure I cried: “Shit!”

So, here I am: snot and shakes at the side of the road, and I’m wondering if I should walk my bike back, or just leave the bastard there.

It’s fine.

The bike’s fine.

I’m fine.

I’m not coughing, but I’m angry. I’m furious. Now I do shout, unquestioningly, a word I can’t type.

Do you have any idea what you just did, you Ka-ful of little shits?

Have you got any thought in the direction of just how dangerous this was, or what it means to me as I am right now?

Sure, I’ve got a cold, and I’m coughing like a man drowning in porridge. Sure, I’m on the side of the road dripping snot and cold sweat, and I’m angry that the only word I could discern from your barrage was: fat.

No.

They couldn’t know. They couldn’t guess, and I doubt they thought much before pulling that incomprehensibly dangerous stunt.

They couldn’t have known that cycling is desperately important to me, mainly because of that spat-out word: fat. They couldn’t know the feeling I get from sputtering to the top of that first of several hills, how freeing it is for me. They couldn’t have a bastard clue that I can only cycle thanks to the 4 discs destroyed in my spine. I cannot walk like I want to, I cannot play sport, I cannot jog or easily lift weights.

They couldn’t know I’m terrified of cycling.

They couldn’t know that last year, cycling took 2 days out of my memory forever. They can’t know that I’m scared whenever I get on the bloody bike. Yet, I love the feeling of doing something physical, and get to feel somewhat normal—even powerful as I pedal my gigantic carcass up steep, Dale hills.

Cycling took six weeks out of the most important and inspiring work I’ve been able to do, and kept me from supporting my colleagues at a time when every hour counted; and I regret that now that our startup has fallen-over and my friends are no longer colleagues. Cycling gave me a stammer, when my job is to communicate, and I can’t help but love getting back up on 2 wheels when the only way to balance is to go faster.

That stupid moment will be forgotten already. A quick laugh, maybe a hint of regret in one of their memories. Maybe not.

No, they can’t know my context, and I can’t stay as angry as I am.

They didn’t know, and that somehow helps.

You can’t know someone’s back story when you do something to them, and they couldn’t possibly know that balancing on two wheels is one of the most important things in my life right now.

No, I have to finish the route.

So I do, and I feel free again.

If anything, I feel freer of phlegm.