Open data and diabetes

In December my daughter was diagnosed with Type 1 diabetes. It was a pretty rough time. Symptoms can start and escalate very quickly. Hyperglycaemia and ketoacidosis are no joke.

But luckily we have one of the best health services in the world. We’ve had amazing care, help and support. And, while we’re only 4 months into dealing with a life-long condition, we’re all doing well.

Diabetes sucks though.

I’m writing this post to reflect a little on the journey we’ve been on over the last few months from a professional rather than a personal perspective. Basically, the first weeks of becoming a diabetic or the parent of a diabetic, is a crash course in physiology, nutrition, and medical monitoring. You have to adapt to new routines for blood glucose monitoring, learn to give injections (and teach your child to do them), become good at book-keeping, plan for exercise, and remember to keep needles, lancets, monitors, emergency glucose and insulin with you at all times, whilst ensuring prescriptions are regularly filled.

Oh, and there’s a stupid amount of maths because you’ll need to start calculating how much carbohydrates are in all of your meals and inject accordingly. No meal unless you do your sums.

Good job we had that really great health service to support us (there’s data to prove it). And an amazing daughter who has taken it all in her stride.

Diabetics live a quantified life. Tightly regulating blood glucose levels means knowing exactly what you’re eating, and learning how your body reacts to different foods and levels of exercise. For example we’ve learnt the different ways that a regular school day versus school holidays effects my daughters metabolism. That we need to treat ahead for the hypoglycaemia that follows a few hours after some fun on the trampoline. And that certain foods (cereals, risotto) seem to affect insulin uptake.

So to manage the condition we need to know how many carbohydrates are in:

  • any pre-packaged food my daughter eats
  • any ingredients we use when cooking, so we can calculate a total portion size
  • in any snack or meal that we eat out

Food labeling is pretty good these days so the basic information is generally available. But its not always available on menus or in an easy to use format.

The book and app that diabetic teams recommend is called Carbs and Cals. I was a little horrified by it initially as its just a big picture book of different portion sizes of food. You’re encouraged to judge everything by eye or weight. It seemed imprecise to me but with hindsight its perfectly suited to those early stages of learning to live with diabetes. No hunting over packets to get the data you need: just look at a picture, a useful visualisation. Simple is best when you’re overwhelmed with so many other things.

Having tried calorie counting I wanted to try an app to more easily track foods and calculate recipes. My Fitness Pal, for example, is pretty easy to use and does bar-code scanning of many foods. There are others that are more directly targeted at diabetics.

The problem is that, as I’ve learnt from my calorie counting experiments, the data isn’t always accurate. Many apps fill their databases through crowd-sourcing. But recipes and portion sizes change continually. And people make mistakes when they enter data, or enter just the bits they’re interested in. Look-up any food on My Fitness Pal and you’ll find many duplicate entries. It makes me distrust the data because I’m concerned its not reliable. So for now we’re still reading packets.

Eating out is another adventure. There have been recent legislative changes to require restaurants to make more nutritional information available. If you search you may find information on a company website and can plan ahead. Sometimes its only available if you contact customer support. If you ask in a (chain) restaurant they may have it available in a ring-binder you can consult with the menu. This doesn’t make a great experience for anyone. Recently we’ve been told in a restaurant to just check online for the data (when we know it doesn’t exist), because they didn’t want to risk any liability by providing information directly. On another occasion we found that certain dishes – items from the childrens menu – weren’t included on the nutritional charts.

Basically, the information we want is:

  • often not available at all
  • available, but only if you know were to look or who to ask
  • potentially out of date, as it comes from non-authoritative sources
  • incomplete or inaccurate, even from the authoritative sources
  • not regularly updated
  • not in easy to use formats
  • available electronically, e.g. in an app, but without any clear provenance

The reality is that this type of nutritional and ingredient data is basically in the same state as government data was 6-7 years ago. It’s something that really needs to change.

Legislation can help encourage supermarkets and restaurants to make data available, but really its time for them to recognize that this is essential information for many people. All supermarkets, manufacturers and major chains will have this data already, there should be little effort required in making it public.

I’ve wondered whether this type of data ought to be considered as part of the UK National Information Infrastructure. It could be collected as part of the remit of the Food Standards Agency. Having a national source would help remove ambiguity around how data has been aggregated.

Whether you’re calorie or carb counting, open data can make an important difference. Its about giving people the information they need to live healthy lives.

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