Care.data – sharing data for the greater good

Posted 21/02/2014

When it is compiled, Care.data will be a giant database of medical records showing how individuals have been cared for across the GP and hospital sectors. Researchers believe the information will be vital in helping them to develop new treatments, as well as assessing the performance of NHS services.

The records will be pseudonymised, which means the identifiable data has been taken out. Instead, they will just contain each patient’s age range, gender and geographical area. Although researchers can apply for those safeguards to be lifted in exceptional circumstances, such as during an epidemic, this will need the permission of the Health Secretary.

The central database will involve taking records from GP practices and linking them with hospital files. Experts say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks, as well as monitor the performance of the NHS.

To date, information has been available about what happens in hospitals, but not what goes on in GP surgeries. The collection of medical records was due to have started in April, but NHS England announced this week that would now not happen for six months to allow for a fresh public information campaign.  

Influential bodies such as Healthwatch England and the British Medical Association had called for such a move, saying the public had not been properly informed about the scheme.
But concerns had also been expressed that the programme could lead to privacy problems and data breaches.

The care.data programme faces a challenge of trust. NHS England will have to persuade people the benefits of sharing medical data outweigh any risks. The Clinical Record Interactive Search (CRIS) at the Maudsley hospital offers an encouraging model.

In six years it has accumulated data on 250,000 patients. Just two people have opted out. Those running the project say they have gone to great lengths to ensure patients understand what the scheme is for and how it works. The information is highly sensitive but identifying details of patients and their carers are stripped out. Every application to use the system goes through an oversight committee led by patients.

The project has exposed high mortality rates for people with mental illness, and is shaping new approaches to improve their care.

George Freeman, an MP and founder of Patients4Data, which represents charities and drug companies, said: “There are those who oppose not just the mechanism of data handling but the principle of patient empowerment and greater accountability. We cannot let opponents peddling scaremongering myths stop patients benefiting from this quiet revolution of modern medicine. There are issues to be addressed. But data is a force for good, not a Big Brother-style conspiracy.”

But a spokesman for MedConfidential, one of the most vocal opponents of Care.data, said it was trying to improve the project rather than just objecting to it for the sake of it.  MedConfidential is campaigning to ensure that every flow of data into, within and out of the HS is consensual, safe and transparent.

Julie Crossley, a medical injury lawyer from Ashtons Legal, comments: “With any such proposal there will be concern about data and lapses in security and this is a risk that comes with this type of database. However, the benefit should outweigh the risks and it would be hoped that sharing this information will improve lives and the way in which patients are treated.”