Here’s a fact that might surprise you: at least 90% of the data that exists today was created in the last five years. Shakespeare – part of the 10%; Darwin – the 10%; Socrates – the 10%; the sum of human knowledge up to 2011 – all part of the 10%.
Where does the rest come from? Apps, fitness trackers, smart medical devices, even our phones – the tools of what has been called the ‘quantified self’, our recent obsession with measuring every element of our performance as people. These devices – an estimated 515 million of which will be sold next year – are constantly churning out endless streams of figures; data snapshots of our day-to-day lives and snapshots which are becoming ever more fine-detail.
In the era of evidence-based medicine, such a huge potential database is an extremely exciting prospect. It’s never been more important for new branded drugs to be able to demonstrate measurable improvements compared to their generic competitors. The more information they have about their patient populations, the easier it is to pinpoint exactly which types of patients can benefit most and offer customers the best value-for-money.
The issue here is confidentiality – this quantified data may exist but patients need to share it of their own accord and why should they?
The short answer, once again, is tailored care. Data sharing allows the identification of early warning signs for certain conditions such as coronary heart disease or arthritis, allowing preventative measures and lessening long-term severity. It can help even after diagnosis – take services like Ginger.io which, through sharing of step counts and call-log data, allows continuous out-of-clinic care for people suffering depression or anxiety.
And the pressure for open access to data moves both ways as demonstrated by the case of Steven Keating. Brain-scanned not once, but twice, Keating was still experiencing ‘smell seizures’ and therefore concerned that something had been missed. Exerting pressure on his doctors, he gained access to 70GB of his own medical data; scans, notes, video footage and gene-sequencing data, and put together the case for another MRI scan. That third scan revealed the presence of a huge tumour in the front of his brain, a tumour removed with no delay by surgeons.
It could be argued that Keating, an MIT doctoral student, is a special case – unusually engaged and technically astute – and that giving less ‘qualified’ patients full access to their clinical data could have more issues than benefits. However, evidence suggests that better informed patients are more adherent, more vigilant and likely to take better care of themselves.1-3
The benefits of data sharing are wide-ranging and it seems inevitable that such an open pool of knowledge will eventually be formed. The future may, therefore, lie less in trying to stem the flow and more in channeling it; working to help patients understand what their data says about their health so they, in turn, can help us improve it.
1. HIV & AIDS, 5Ed: a foundation for nursing and healthcare practice; Robert J. Pratt, CBE FRCN; CRC Press, 26 Sep 2003.
2. Coulter A, Parsons S and Askham J. ‘Where are the patients in decision-making about their own care?’, 2008. Available here.
3. Detmer, DE et al. The Informed Patient: Study Report, 2003. Available here.