Special Report: Disquiet over new NHS database echoes privacy concerns first raised in Wirral in 2008 (From Wirral Globe)
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Special Report: Disquiet over new NHS database echoes privacy concerns first raised in Wirral in 2008
CONCERNS about a new data pool collected from GP records across England mirror privacy worries first expressed in Wirral six years ago.
Throughout January, every home in the country will be sent a leaflet about major changes to the way personal medical information is stored by the NHS.
Gathered from GP and hospital records, data covering the entire population will be uploaded to a repository controlled by a new NHS information centre.
Unless you “opt-out” of the database by writing to your GP, it will be assumed you have “opted-in” and your medical records will be included.
Privacy experts are warning there will be no way for the public to work out who has these records - or to what use their data will be put.
Back in the summer of 2008, Wirral’s Primary Care Trust was deluged with complaints about its “Wirral Keep Well” scheme – which turned out to be a privately-run telephone health advice line owned by a company based in Boston, Massachusetts.
Every household in the borough was sent a postcard by the PCT informing them of the project.
But unless people wrote to their doctor saying they wanted to “opt-out,” their confidential health information would have been sent to a private call centre run by the American firm in Cambridge.
Wallasey councillor Leah Fraser was vehemently opposed to the PCT’s scheme.
Her comments at the time chime with current privacy alerts: “This development makes it more difficult for patients to control who does, and does not, have access to their personal records.”
Today, Cllr Fraser said: “It’s really important the NHS can collect data anonymously to help in research and development.
“However, I do not believe patients’ personal information should be treated in the same way, possibly leading to them being identified.
“If patients wish to take part in this kind of exercise, then they should be asked to opt-in.”
The extracted information for the new country-wide data pool will contain your NHS number, date of birth, postcode, ethnicity and gender.
The central database will enable experts to assess diseases, examine new drugs on the market and identify infection outbreaks.
Once live, organisations such as university research departments – but also insurers and drug companies – will be able to apply to the new Health and Social Care Information Centre to gain access to the database, called “care.data.”
If an application is approved, firms will have to pay to extract this information, which will be scrubbed of some personal details but not enough to make the information 100% anonymous.
NHS England said it would publish its own assessment of privacy risks this week and pointed out that one of the key aims of care.data was to "drive economic growth by making England the default location for world-class health services research".
A spokesman told the Guardian newspaper: “A phased rollout of care.data is being readied over a three month period with first extractions from March allowing time for the Health and Social Care Information Centre to assess the quality of the data and the linkage before making the data available.
“We think it would be wrong to exclude private companies simply on ideological grounds; instead, the test should be how the company wants to use the data to improve NHS care."
Leading medical research charities said that while they "cannot guarantee that the data will be 100% safe" they stressed that it was of "fundamental importance" for people to allow their records to be included in the scheme.
Dr Peter Weissberg , medical director at the British Heart Foundation, said: "We're worried that some people might think, 'this is a bit dodgy, I'm going to default out of this'.
"And if they do that, that will have enormously damaging effects on our ability to run the health service and to do good research in the future."
He said it took decades to associate lung cancer and smoking because researchers had to get permission to follow up patients who had lung cancer and to search through their medical records before they realised that the vast majority were smokers.
"In today's health service, if patient data were available and you could just search for 'smoking' and 'cancer', you would suddenly get a huge correlation that would show the link," he said.
In the face of continued public disquiet, the 2008 “Wirral Keep Well” scheme was postponed indefinitely.
Primary Care Trusts were abolished in 2013 as part of the Health and Social Care Act, with their work taken over by Clinical Commissioning Groups.
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