News Feature | February 21, 2014

Privacy Fears Delays Controversial Database

Source: Health IT Outcomes
Christine Kern

By Christine Kern, contributing writer

Privay In NHS database rollout

Fears of privacy violations force halt to NHS database rollout, American healthcare system keeps eye on outcome

According to Mail Online, fierce opposition from patients and doctors has sparked six-month delay in the implementation of a controversial British NHS project to harvest data from medical records. The delay was enacted to ensure communication to the public the purposes for which their details will be used and how they can opt out.

The decision follows growing backlash against the program from patients groups, privacy campaigners, doctors, and the Information Commissioner, while program supporters assert the benefits have not been properly explained. Officials from NHS England agreed to the delay following two days locked in talks with the British Medical Association (BMA).

The BMA and the Royal College of General Practitioners (RCGPs) – which between them represent more than 150,000 doctors – said concerns had become so grave that the program should be put on hold unless there was a substantial publicity campaign, including national TV and radio advertisements.

According to Tim Kelsey, national director for patients and information at NHS England, "NHS England exists for patients and we are determined to listen to what they tell us. We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”

Earlier this week a YouGov poll of 1,100 adults found 65 percent of the public opposes the plans, with just 17 percent of those polled supporting the database. Recent polls of doctors found that 80 percent felt they themselves did not have a good understanding of how patient data would be used.

Backers of the £50 million program say it will improve healthcare and assist medical advances by allowing health researchers and private firms to access the data for such purposes. The data, extracted from GP systems, includes family history, vaccinations, referrals for treatment, diagnoses, and information about prescriptions.

Privacy campaigners and patients’ rights groups have raised fears that the data could be misused – such as by companies trying to target their products – or fall into the hands of insurers. Although public information leaflets supposedly were sent to all households in England last month, polls have found two thirds of the public do not recall receiving a leaflet from NHS England explaining the new system. Experts suggested that because leaflets were delivered alongside junk mail, the pamphlets might have been overlooked.

David Davis MP, a former shadow home secretary, said on Tuesday that the new database would be “a honeypot for hackers.” With the recent HIPPA guidelines wreaking havoc on American attempts to digitize and streamline patient records, the American lesson from this British misadventure is simple: do the prep work before launching your programs.