18 Nov 2013 Posted in Opinion By Communications
Is it the public who do not understand our aspirations for a brave new world built on 'big data?' Or is it us who do not understand the public?
I suspect both are true. But it's the assertion implicit in the first question which tends to hold sway. In fact, if truth be told, all sorts of assumptions are made about what the public think and feel, rather than thought given to the evidence.
It is time we challenged ourselves to do better. It will surely be to the detriment of our aspirations around health research and innovation if we do not. It could be said that we are doing a disservice to the public in the meantime.
The published evidence so far is that the majority of people are comfortable with the notion of sharing their data, especially when it comes to health research. In fact, some evidence shows that some people are more positively disposed to sharing their data than taking part in a clinical trial. The increasing participation of NHS patients in research and the altruism that underpins it is a strength which we should make more of as a nation.
That's not to say people don't have concerns. But they generally buy into the idea of sharing data and assume it goes on anyway. They can even accept it when things go wrong if matters are handled correctly. What really hacks them off, in my experience, is a lack of transparency and any sense that the rules of engagement over their data have been changed without their knowledge. From a patient and public perspective, health research still has much to learn about what it means to respect individuals as 'research partners' as opposed to 'subjects.'
As we know, the 'big data' agenda is being played out in a world where consumers are increasingly savvy about the use of data. You won't have to walk that far from the conference hall on Thursday to find people gathering, linking and analysing all sorts of data to help them make relatively humdrum decisions. Across the health system patients and carers are using new tools and platforms - whether it is PatientsLikeMe or CFUnite - to share their experiences and data and promote research with their colleagues in science and the health professions.
So, you could argue that it is not scientists or health informatics experts who are the smart ones but the public. As they have often proved in the past, they will out-think and out-smart us in finding new ways to apply big data to improve their health and the health of their communities. But it begs the question why we are not doing more to involve, and co-produce health solutions with them, rather than keep up this charade that the public are there 'to be educated.'