There is a lot of discussion about data here at TEDMED 2013, and this is no great surprise. Big data, small data, open data, crowdsourced data – this is the information backbone of science and the key to breakthroughs and innovation.
Assuming the data is put in the right hands.
Two interesting reflections emerged from the Day 2 sessions regarding data though… And I promise not to make this too nerdy or jargonistic.
Open Data & Open Access
The first, was around open data and open access science. Exploring notions of science, money and the free flow of information. The term ‘open’ describes the unrestricted, uncontrolled provision of data or science to anyone, anywhere, anytime. Free from financial barriers.
Traditionally, when data is collected by scientists, it is kept closed, secret and locked away. The raw information is reserved only for those who collected it to analyse and report – a process which can take years. Think about a cancer registry, or a block of data describing cancer trends and occurrence in a population. If this data is closed and accessible only to a select group of people, only a select group of questions will be asked and therefore answered. But imagine if the data (de-identified) was available to anyone to analyse, test and make breakthroughs on. No barriers to innovation – encouraging competition & transparent science.
Similarly, open access is about unrestricted sharing of scientific outcomes and findings.
“Open access to knowledge for students, doctors and citizens cannot be separated by economics, access to science is good for science, business and society” argued TEDMED presenter Deborah Estrin. “The current system is outdated – a subscription or user-pays system is inequitable, ineffective and regressive.” She outlined that open access frontliners PLOS have “shown that open access illuminates artificial constraints on publication and leads to greater science for all.”
Profit is not a dirty word, but we must keep in mind that science is about accumulating knowledge for innovation and universal benefit. The greater the access, the greater the innovation and benefit.
Surprisingly, open data and open access to published data is controversial still to some. To me, it seems not only logical – but also just. Science should be accessible to all, not just those who can pay…
I have written about this before, but will echo Estrin. A day when the only limits on scientific publication and access are the boundaries of our minds, will be a wonderful day indeed.
There has also been a lot of discussion about BIG data in recent years. Big data describes data sets that are so immense and complex, that they require technological and scientific innovation to unlock the nuggets of science contained…
Small data, is also a fascinating concept. What is small data?
Many of us donate. Money, blood, time or our voice. Imagine if we could donate our data.
Knowledge donation like blood donation. Blood is precious, we give it for the greater good and entrust it with leading organisations and NGOs in our community. Place it with a bloodbank. It is used to maximum benefit for all, regulated and protected. Society bands and donates in mass when it is needed and the blood donation is anonymous.
Could we do the same with health data?
Information donation to a databank. Controlled by us, donated by us for the greater good. Full control with, transparency and feedback for the donor. It could be our height and weight, our age, our ECG or our blood results. But it could also be more. How we feel, what we worry about, how treatments or diagnoses affect us.
All of this could be donated to science and health. To help others, or to help ourselves. We could support specific causes, say cancer or men’s health, or specific research studies for a once-off donation. We could even donate the information direct from our smart-phones, or via a secure link from our local GP.
A carefully constructed, transparent approach to health datasets combined with some simple, secure, innovative technology – and patients as the starting point.
Where n = me, but combined our collective data furthers and catalyses a range of science domains.
Some food for thought and more to come. From DC again, signing off for now.
Dr Alessandro Demaio is a medical doctor, originally from Melbourne, Australia, with a Masters in Public Health. In 2010, Sandro began a PhD in Global Health with the University of Copenhagen, focusing on Non-Communicable Diseases (NCDs). His primary research project is based in Mongolia. As a Director for NCD Action, in 2013 Alessandro is a fellow at the Copenhagen School of Global Health and Harvard Medical School.