Big Data: How do we know what’s missing?

It has occurred to me that we really do need “all” the data. From the perspective of a business they need access to the data that affects their business. They need the data from all their customer interactions; sales, CRM, training feedback, marketing campaign feedback etc.

Then there’s the big data:

What’s going on in their marketplace?
What do the public at large think and say about our company and our competitors? (sentiment analysis)
What can the Life Cycle Analysis (LCA) of the raw products used in our business tell us about how we should continue or align our strategy? For instance nearly every company is affected by the price and supply of oil. This affects costs for our entire supply chain. This follows on to add all the complex systems we interact with – the list is endless…

Then there’s an issue that’s close to my heart – one that very few other people (relatively) care about. Sure, as I tell you about this, you’ll probably care too. But how much?

I’m talking about Guillain-Barre Syndrome or GBS for short. This is an illness that affects very few people (I believe about 1000 per year in the UK). About 2% of these people become completely paralyzed and require life support, plugging into a ventilator, in an Intensive Care Unit (ICU).

Some 22-years-ago, at the age of 23, I contracted GBS. I was one of the unlucky 2% that needed a long stay in ICU. I spent nearly 8 weeks in the ICU and a further 5 months in hospital. As the paralysis receded, which it nearly always does in young people, I had intensive rehabilitation that enabled me to learn to walk again.

So what has this got to do with Big Data?

Well, no one really knows what causes GBS. And they certainly don’t know how to prevent or cure it. I’m convinced that the answer is out there; but where?

Because the illness is rare there isn’t any focus on finding answers. I suspect that as research moves on the answer will probably be found by accident. As we learn what each of our gene’s do and how they interact and influence our body’s systems we will, I believe, find the triggers that cause our immune systems to destroy the myelin sheath.

(FYI: by destroying the myelin sheath that covers the nerves the signals are no longer able to pass along them. Hence movement is not possible.)

The data is already out there. Starting in the databases of the genomic research companies, patient records, right through to the unstructured anecdotal blog posts of the sufferers and their families. It’s now that technology is enabling analysts to ask the questions of all this data. We may just, one day, find that we – GBS victims – have a defective gene that when combined with some improperly cooked chicken is the recipe for disaster.

Of course we need to anonymise the data but some people may think that the use of this private and personal information is a step too far, but for me, and the millions of other people that have suffered from rare disorders, it can’t come too soon.

Learn more about GBS:

UK NHS Detailed Description of GBS
Wikipedia entry on GBS Support Group

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