NHS England’s director for patients and information Tim Kelsey has claimed the controversial care.data scheme will close “dangerous” gaps in patient care, but many disagree.
Speaking at WANdisco’s Big Data Breakfast event at City Hall, Kelsey told delegates the data-sharing programme will be “starting again” and provide a proper route for harvesting big data and analytics.
He claims that care.data will allow the NHS to vastly improve patient care this year and beyond.
“Because there are so many individual points of data, it would be very easy to uniquely identify an individual from the sheer volume of data,” Joss Wright told Sky News.
“The Hollywood nightmare scenario is the hacker who gets the whole database and can use this to blackmail people.
“Also there are corporations who want to access the data, in order to perform long term studies. Sometimes that can be a good thing – pharmaceutical companies conducting studies on drugs.
“But also things like credit rating agencies or health insurers who can use it to identify you individually and determine that you have a higher likelihood of certain conditions, so your premiums should be higher,” claimed Wright.
Concerns about patient safety, anonymity and lack of public education led to the care.data programme being indefinitely suspended, but NHS England is making it clear it will be going ahead with the project.
Despite this, Kelsey continues to explain the potential benefits of the programme and it seems the project is beginning to move forward again.
“Care.data is starting again now, there are some pathfinders which are beginning to work on extracting data, linking GP data and hospital data in new ways which mean we can analyse the pathway of care that patients travel on,” the director claimed.
“It’s just an amazing thing – and I am sure most people don’t realise – that the NHS isn’t capable, currently, of telling you how many patients are treated for chemotherapy for example.
“There are gaps so big, so dangerous, that they just have that they just have to be filled from a moral, as well as political stance,” he added.
Although Kelsey feels positivity towards the future of care.data, the first annual report from the Independent Information Governance Oversight Panel revealed there is still much work to be done.
The committee claims that NHS England “must try harder” after revealing it was aware a distributed care.data information leaflet was unfit for purpose.