An NHS contractor has called on patients not to opt out of the NHS’s new patient database, saying that doing so could damage research into diseases.
Gayna Hart, founder of IT healthcare systems provider Quicksilva, urged people to trust the privacy safeguards behind the new £12bn data-sharing scheme, care.data.
The programme will see patient records from surgeries across England stored in one place, the national ‘Spine’ – into which Quicksilva’s software provides access for trusts and hospital departments.
Hart said: "If people do opt out of it, they will slow down the researchers’ ability to get to the bottom of discovering the root causes of diseases.
"We’ve always had bits of data such as what people have been prescribed, but that’s only the middle bit of the journey. We don’t know what happened to them before that made that prescription necessary, and if that prescription stops we have no idea whether that worked or not.
"By holding all this data from all these different sources we’re getting a complete view of the patient’s journey."
But she conceded that one big challenge will be how easy the system’s privacy measures prove to explain to the public.
"The smaller the piece of data you go on, the easier it is to locate [a person]. So they will never give people small samples of data to go on [like postcodes]," she said.
"To avoid that they bring in banding, so instead of asking for a postcode, you will have a larger geographical area.
"It is easy to explain this to IT people but you just can’t do that with members of the public."
Another obstacle could prove to be people’s perception of the NHS as not very innovative, Hart added.
"Banks are seen to have modern technology whereas the NHS is seen to have old technology," she explained.
Every home in England will be sent a leaflet about the database this month, and those who do not want their information stored on it must notify their surgery before data-gathering begins this spring.
