What if I told you, your data can save lives?
Nowadays with everybody obsessed with data protection on one hand and so many abusive behaviors by the usual suspects on the other hand, there is a point people are just missing.
… And with the advent of the big data technologies, this point suddenly becomes more relevant: Sharing our data can change the world! Keep reading and will discover how… We just need to get rid off the existing barriers! And these barriers are since the advent of Big Data no longer of technical nature… the barriers have been built over years in our minds!
The fact that people make available their data for the good of the community sounds as naïve as unrealizable… But “what if I told you your data can save lives” (as you can see in the picture using the Morpheus meme)
Be part of “The Lab”
Let’s say you wear a device registering your heart beat rate –for example, one of the following picture Jawbone, Nike+ Fuel, Fitbix, Motoactv, etc-, let’s say the same device or your smart-phone can track your sleeping habits -with apps like Sleep Cycle Alarm clock, etc-. You can be permanently geo-located by activating the GPS of your phone or of your pulsometer. Let’s say you are a control freak who enters your daily expenses in a cost saving app… or you are one of those who track the food items and the amount of calories consumed per meal.
Nothing special so far, right? nothing unusual… nothing there, we are not doing ourselves or we don’t know anybody doing it.
But what if you make this data available? and you are not the only one?… but a lot like you! With all this information together combined with freely available information like meteorological information, etc, you could become part of a huge lab to fight tumors, understand hypertension, identify people at risk before a disease develops and a very long etcetera.
Let me show you one example of your data in action fighting cancer:
- Your location can be used to determine the exposure to factories, traffic or power plants - Your location together with the timestamp reveals also your exposure to all varieties of weather (eventually also your exposure to sun light, interesting to understand the patterns of skin cancer) which can be combined with the UVB estimated radiation in the area. - Your HBR fits into the equation to understand different effects depending on the various cardiovascular groups. - Your daily expenses might reveal active smoking habits... Your location might reveal passive smoking habits if you happen to be close to active smokers - Your diet can also define your propensity to develop a cancer
But it doesn't stop here... you collect data not only for the positive trues (the ones that are intended to develop the disease and ended up having it and the typical subjects for research), but also for positive falses (those that were predestined to have cancer taking into consideration the before mentioned factor, but who didn't), and discover which factors combined lower your propensity.
And this ever-growing lab becomes more and more powerful as the number of contributors and “data donors” increases and as the amount of historical data grows.
The semantic web as a sharing tool
The idea of sharing data is by no means new. It’s actually the corner stone of the modern lab research activities. We all know the semantic web is not being perceived as having kept its promises –and I’m writing it with certain disappointment after so many years creating ontologies and reasoners-. Yet we can tell a semantic web success story based on exactly that: saving lives.
The research community (especially in bio-sciences) has been sharing the result of bio-medical experiments for many years already… And the semantic web has been making the information discoverable and linkable ever since.
If you want, the semantic technologies provided a framework to standardize the information sharing. Yet not many of us are willing to sacrifice the freedom of sharing information “as it is”, without having to put it behind the bars of an ontology. And the adoption end up being very poor…
So to the question “sharing, yes or no?” you already know the answer if you add to the nature reluctance the infrastructural hurdles.
Big Data to the rescue
The technology no longer stands between the people’s data and their will to contribute to a cause bigger than anyone of us… There’s nothing yet like sharing-by-push, but the power of Big Data could deal with that and more!… And not exactly because of all the new frameworks designed with unstructured or semi-structure information… but mainly due to the cero-cost computing power available to boost the existing frameworks and enable machine-learning-based approaches to information extraction.
Having huge volumes of historical information, the right skills to combine different sources and the proper mechanisms to discover hidden patterns in your data can change the way we research… Now the scientist have at their service an unprecedented data crunching power that needs to be fed by your data.
We all know SIRI or the Dragon software… Applying Hidden Markov Models (HMM) trained over years these models work the miracle of speech recognition… Don’t you think that the researchers are very likely to come with HMM to predict your the propensity to different kinds of cancer depending on the places you’ve been if provided with the right amount of data? And this is only one example… One example of how your data can make a difference… but for your not the only one.
Only one questions remains unanswered for many people… do you want to become a data donor? Shouldn’t it be for us a duty rather than a choice?
Great post! I’m working in a cancer research institute and believe me, I know very well how the data pieces in your example would bring us at least a new perspective in our research.
To your last question: definitively our duty!