I never knew my mother's age until she was on her deathbed. She kept everybody guessing till the very end. It was only when she was gravely ill and needed the help of the health services that she finally offered up her date of birth to hospital staff. She realised at that point that giving up some information about herself was in her own interest.
If she was alive now I believe my mother would be fearful of Big Data. If she wouldn't tell her own children how old she was, she certainly wouldn't hand her email address, date of birth, gender and location to any old company offering a free taxi app.
As CEO of one of the largest data analytics centres in the world, Insight Centre for Data Analytics in Ireland, I see every day how data is used to serve people like my mother. Intelligent data applications, especially in the health field, are making diagnoses more accurate, drugs more effective and giving patients more control.
Healthcare has always been about data analytics, only now we have access to so much more data. Insight researchers are developing physical sensors that can give doctor and patient an accurate real time picture of what's going on under the skin. Sensor data can be built up over time, giving deeper insights than a single surgery visit. Information from sensors, collected at home, can be fed to the doctor on an ongoing basis, providing much better monitoring and treatment.
Broaden out this application to bigger groups. If we bring together the sensor data of a large group of patients with heart conditions, for example, we can start to spot trends and make predictions. We can start to make more intelligent choices about what treatments to administer, where and when to make beds available, and what to tell patients when they come into surgery. Doctors have been analysing data in their minds for millennia. Now we can support and significantly enhance this process, taking evidence-based healthcare to a new level.
But to do this, we need access to the data. We need the public to feel trust when they hand over details about their health. They must be assured that they will not have their information sold on to insurance companies who will then bump up their premiums. There is a very real conflict here between privacy and progress, and our current thinking around regulation is woefully inadequate. Our 350 Insight data researchers in Ireland are grappling daily with the shortcomings of a regulatory system that is merely tinkering at the edges of the data challenge.
This week we decided to lead a fundamental change in direction. Insight took a delegation to Brussels to argue for an EU-wide Magna Carta for Data. A Magna Carta for Data would not be a list of protectionist rules about privacy triggered by court cases and data infractions. It would be an overarching, policy-led document that describes what we want, and don't want, from Big Data. It is a document that would put citizens at the centre of the Big Data age, and ensure that the technology develops with democracy and human rights as guiding principles.
The Magna Carta would spell out how we are going to put the user back in control and hold industry, researchers and governments responsible for realising that goal.
But the Magna Carta is not just a document designed to protect individuals. Big Data has a lot to offer society. The Magna Carta would not enshrine privacy measures that risk bringing enlightened data research to a standstill. The Magna Carta would look at how we can give researchers, governments and businesses access to the kind of data that fuels intelligent decision making. These two values can be balanced, but only if we look at Big Data in the round.
It goes without saying that this is a global issue. The EU and the USA are negotiating a Transatlantic Trade and Investment Partnership agreement (TTIP). How we share data between the two partners will be critical. We can't decide as we go along. We need a vision for how this will work, underpinned by democratic values.
At present, the EU position is as follows: don't do anything to weaken privacy legislation. But the truth is that data analytics research has come so far so fast that privacy regulation can't contain it. Even if we want to protect our citizens, we can't do it using current schemes. The focus is too narrow.
If we in Europe start to think big about Big Data and our relationship with it, we can provide global leadership on this issue. We can ensure that people like my mother get to decide who uses her data and what for. Our citizens need the confidence to hand over data when it's good for them, the control to hold it back when it's not, and the wisdom to know the difference.