Who really gets the better deal out of selling public data?
The first thing to say is that TBI is not proposing the selling of public data. What TBI wants to see commercialised is the access to data; the transfer of ownership of data should not take place. The data belong to the people of the UK. We need to make sure that whoever is going to use the data can deliver for the population rather than just for serving private interests.
What makes UK health data so interesting to private companies?
So, think of smaller countries like Estonia or Finland. They have smaller populations in the region of millions. By getting the health data right, they can actually drive health outcomes and innovation a lot quicker. The UK has a 70 million population and a health system that looks after people from cradle to grave over a number of years. It has a lot of very rich data covering a lot of characteristics, reflecting its much more diverse population. This includes variations in genetic makeup, cultural practices affecting health, differing socioeconomic factors and a broad spectrum of lifestyle choices – all of which contribute to a more complex but comprehensive dataset.
If you give private interests an inch, they will take a mile.
Probably, and that is why we need to make sure that doesn’t happen. The health data we have are a public asset. We need to have the right guardrails in place, making sure that there are rules regarding how the data are accessed and used. The public should have oversight of what companies, or what users in general – be that academia or non-profits or the charity sector – are doing with the data and how they’re doing it.
Commercialisation will only ever have a negative impact on public trust.
It depends on how you do it. Because if you do it wrong – not engaging with the public, not really being transparent, not making sure that public concerns are properly addressed before you move forward – then obviously whatever you’re going to do is going to risk losing public trust. The TBI proposal is very attentive to that.
The NHS is not savvy enough to use data properly.
We need to give a lot of credit to the NHS in terms of how it is really trying hard to make sure that this works. Its Data for R&D programme and the ongoing initiative for a secure data environment are good examples of that.
The UK is already attentive to the question of how to make better use of the data resource to drive better health outcomes and innovations. To accelerate that, the government needs to pay more attention to it so that there’s more political awareness – and then it needs more resources. TBI’s proposal here is to try to think of a way that can radically use NHS’s resources to deliver outcomes that would benefit the population. This really builds on what the NHS is doing right now.
Do You Have a Question?
Do you have a question or statement you would like to put to our experts on a particular policy area? We will use your questions in a future series.
