All posts by alex

A patient’s plea for data

I have an obsession, and that obsession is data. I instrument my house so I know how hot or cold it is, whether things move or not, how much data I’m sending over my internet connection and my blood pressure, weight and BMI.

As a patient with Crohn’s disease I similarly obsess over trial data, learning what does and doesn’t work (thank you Cochrane) and turning up at my consultant’s armed with PDFs. Yes, I am one of those patients.

For the last three years I’ve been taking Humira to manage my Crohn’s disease and I’m super pleased with the results – I’m better than I have been for years. Humira is an interesting drug and comes from a family of biologics that are a relatively recent development and consequently cost a small fortune (at current BNF rates that’s £352 per injection and I take one every two weeks). Not only do I want to be sure the treatment is medically effective I also want to demonstrate that despite its high cost, the overall “return on investment” is worth the NHS paying for it (by the fact I spend less time in hospital and that I’m a productive member of the workforce).

But more importantly I want to know that these really exciting monoclonal antibodies I’m injecting into myself aren’t going to cause me harm in the long run. They’re pretty new things so we don’t really have any idea what they may or may not do to me over 20 or 30 years (early signs with the first widespread anti-TNFα drug, Infliximab, suggest no problems but who knows) particularly as there have been some exciting failures with biologics.

As a patient with a vested interest in these things I’m a big supporter of All Trials, an initiative my friend Ben Goldacre plays a big part in, which aims to ensure all medical trials are registered and reported (please go sign the petition, I’ll be here when you’re done). I’m therefore pretty upset to see that AbbView (the makers of Humira) are suing the European Medicines Agency to prevent disclosure of data. Patients, trial volunteers, regulators and governments deserve to have the full facts in front of them when decisions affecting your life and health have to be made.

A month with a Windows phone

I was recently given the choice of a new work phone and decided on a HTC 8x, mostly to see how Windows phone 8 behaves. My thoughts in summary format:

  • I do love the live tile UI – having an at-a-glance indication of stuff (like weather, calendar, tube status) is a really nifty and innovative thing. It works much better on a phone or tablet interface than it does on a desktop computer though.
  • The app store is a mixed bag but functionality wise it’s great with a unified search that brings in results from apps, music, games all in one place, the ability to browse the store from another computer’s web browser then “push” that app to your phone and best of all is trial mode where you get a free time-limited or functionality-restricted version of the app to use to decide whether it works or not. On the other hand, it’s lacking a lot of the content but I have found apps for all my major needs like evernote, foursquare, twitter and lastpass.
  • In a similar vein, IE10 is ok but it’s a shame there’s no version of Chrome available as IE10’s tab switching is clunky.
  • It took me a while to work out some of the UI – the “back” button also seems to do a lot of things, including task switching which I find I bit clunky. It’s also lacking a decent way of scrolling back up to the top (on android and iphone I’m used to tapping the top of the screen in some way).
  • Integration with a desktop computer is basic (but the phone app is still “preview 2”? really?) but gets you there, especially as it’s just a mass storage device allowing you to drag and drop your music straight onto the device. This alone is worth considering switching away from Apple in my opinion.
  • Skydrive integration is seamless, office documents just get copied back and pictures get uploaded perfectly with no messing and you can see it all dropbox-like on the web or via the syncing apps on the desktop. This is really one of the most important things Microsoft have done right and it puts iCloud to shame.
  • On the hardware level the HTC 8x is probably the best windows 8 phone right now (the lumia 920 is just too big) – the feel of it is lovely with its rubberised back – but I just can’t quite get the knack of the buttons. The volume rocker gives you no tactile indication of which way is up and down and often I find myself mashing the volume when I’m going for the lock switch on the top. Little things, but they do detract a bit.
  • Battery life is not too shabby; I easily get a couple of days use between charges (and that’s without turning the power-saving mode on).
  • The camera is ok, but just ok. The Microsoft “Blink” app is a nice camera app that starts taking photos before you even press the shutter and allows you to select the best version. On a similar note I like the way camera and photo apps plugin to the central photos hub and allow you to mess with filters and upload stuff from one place.
  • The screen is not too bad, the colours are certainly nice and vibrant and the white balance is good. It’s not quite as sharp as the iphone 5’s screen though (HTC on the left, iPhone 5 on the right – click for bigger!):
    HTC8xiphone5

Overall it’s a nice experience but it’s let down in a couple of areas and you just get that feeling that it’s just not quite finished, but give it six months and it’ll be great.

Would I buy one? Absolutely.
Would I replace my iPhone 5 with one? Not just yet.

Instrumenting your house

I recently bought a bunch of wireless sensor tags from a guy in California. The little sensors communicate movement and temperature back to a ‘tag manager’ that you plug into your router. There’s then a cute little web/IOS/android app that allows you to configure them and also receive notifications when they get too hot or are moved.

My main reason for doing this is that we keep temperature-sensitive medication in the fridge at home and the paranoia in me wanted some way of knowing if the fridge door has been left open, or that the compressor has failed.

Capture

 

Whilst pretty straightforward to get going, I’ve found configuring them to be a steep learning curve: the UI has an amazing array of configurable options (which is a good thing) but due to the shear number of them and the inherent delay of seeing updates it can be a bit confusing to see the results of your fiddling. I was also thrown by the fact the temperature sensor in the tags needed calibrating first. The power state of the tags also seems to vary wildly, perhaps that’s related to the cold of the fridge, which makes it difficult to know how long the battery is going to last.

I’m still not yet at the level where I completely trust the tags to alert me when something bad has happened but I don’t think it’ll be too long until that’s the case, but if you’re looking for a neat little solution that tells you where things are, or how hot something is, I think these are definitely worth a punt.