Big data has always been important in health care research. John Snow famously used epidemiological data to identify the source of the Soho Cholera outbreak in 1854. Aggregated case reports are used to classify disease and improve our collective understanding of illness so that we can treat it. I myself spent happy hours as an undergraduate researching original contemporary case reports of the ‘insane’ in the 17th century, printed alongside tables of numbers, symptoms and demographic data.
The UK government now wishes to use the 15 + years of highly detailed individual patient GP records for research, by any organisations that wish to use it.
Jeremy Hunt stated in an interview recently that GPs should use public trust to sell the benefits of the care.data programme.
I’ll not dwell on the irony of the current health secretary trying to use the trust in GPs he has consistently tried to erode, nor will I discuss the implications that government doesn’t have enough trust itself to trade for the public’s data!
How complex must it be for government – how can they reconcile individuals’ thoughts on privacy, support for medical research, and trust in the system storing and protecting the data?
Fortunately there is a market answer. Simply invite all those registered with a GP to submit a ‘lowest acceptable price’ for the use of their data over the next 3 years. Make the scheme opt-in rather than opt-out. The government then selects a price point that meets the number of patients they need and pays all qualifying patients this price.
It would even be possible to randomly select a cohort of patients who will be offered much higher prices for their date, to provide a control group for the possibility of the wealthier being less likely to part with their data at the chosen price.
This would be a true consensual trade, and would make both government and individuals aware of the true value of our personal data.