UK Biobank - more good news on data

Is the tide turning in the battle to get more health data shared for research? I ask because the past couple of weeks have seen some really positive coverage of this subject after years of negative stories about the threat to privacy of “data grabs”.

First, Our Future Health, a hugely ambitious project to monitor the health of five million people over decades, celebrated the milestone of signing up its millionth volunteer just over a year after recruitment got under way.

Now this week UK Biobank, a project which started back in 2006, has shown just how great the potential of even a much smaller health data collection can be. Its half a million volunteers have now all had their genome sequenced, providing what has been described as the world’s most important health database. Sir Rory Collins, principal investigator at UK Biobank, said: 'This is a veritable treasure trove for approved scientists undertaking health research, and I expect it to have transformative results for diagnoses, treatments and cures around the globe.'

Data fuels medical research

I wanted to know what impact this resource could have on Parkinson’s research and when I caught up with UK Biobank’s Chief Scientist Professor Naomi Allen she reminded me that, even before the genome sequencing data became available, another programme had yielded results.

Ten years ago around 200,000 of the volunteers were given smartwatches to wear for several weeks and over the following years, many different researchers examined the data they generated, including some studying Parkinson’s. “What the research found was that the Activity Monitor data could predict who was going to develop Parkinson's disease up to seven years before they were diagnosed,” Professor Allen explained.

She says the availability of the genome sequencing data should bring further discoveries:

“That will lead to a much better understanding of how genetic variation across the whole of our genome influences our physiology and metabolism, and also the risk of developing neurodegenerative diseases just like Parkinson's disease. Once you have a much better understanding of the genetic causes of disease and why it's developed, that will lead to the development of new drugs to treat disease>’

Yet there is still heavy resistance to many initiatives to share health data, with deep concerns about private sector involvement. Just imagine the outcry if Sir Rory Collins had described the database as “a veritable treasure trove for Big Pharma..” Yet inevitably many of the scientists using the data will be at least partly funded by pharmaceutical giants. I have no problem with that, but many people, irrationally in my view, seem to think giving the private sector any access to our health data is either part of a devilish plot to privatise the NHS or will lead to our health records being handed to insurers or advertisers.

Both of these scenarios seem far-fetched. Take the furore over the granting of a £330m contract to the controversial American company Palantir to build a platform to allow greater sharing of data across the NHS. Now it is perfectly understandable that some people don’t like Palantir or its founder Peter Thiel - I’m among those who would far prefer it if a British-led consortium had won the contract.

But the idea that the company is going to take the data, deanonymise it and flog it to insurance businesses or pollsters is daft . Its whole business is built on contracts with governments, and breaking an agreement and exposing a customer to embarrassment would be commercial suicide.

Even dafter is encouraging people to opt out of all sharing of their NHS data, as some campaigners are doing - especially as the Palantir deal isn’t even about health research. Pooling data - as much data as possible - for research promises huge benefits for all of us. Withholding it out of some vague fear that someone might make money out of it and means opting out of the quest for better health. As UK Biobank’s Professor Naomi Allen puts it:

“We do have to think about what is lost if we don't share data with the world's greatest minds to help solve what are the causes of these diseases and how are we going to better treat them.”

As I have found in recent weeks when I have turned to the NHS app to check my many hospital appointments, there is also a practical reason why sharing your data makes sense. It is likely to make managing your interactions with the health service much simpler.