Patients will control records, says DoH

The department is considering letting citizens download their health records, turn management over to third parties anywhere in the world and donate their data to researchers. "Patients should have far greater control of their own information," Burns told the EHI Live conference in Birmingham on 9 November 2010. "We should all be able to see and change errors in our own medical records." In a speech to the event, the minister added that this could mean charities such as Cancer Research appealing for data, rather than just money, as patients with cancer would be at liberty to donate their information. "Would you do that? I think a lot of people would." Such control could also mean patients adding data to records, such as end of life wishes, dietary requirements or the need for a wheelchair. However, he said that funding for this and other health IT work would have to come from savings. "Let me be straight with you: there is no new money for the information revolution. It must pay for itself." In a later speech at the event, Christine Connelly, the director general of informatics at the department, provided more detail. "We do mean control," rather than just access to patient records, she told the audience. "The secretary of state is committed to giving patients control. That's a very big word... It's not an easy thing to say or an easy thing to deliver." She said that it would not mean offering patients access to every system in the NHS, nor would it allow people to withdraw all their data, as clinicians need such information in their work. But it would allow patients to download their information, then use it and share it in whatever way they like – including the idea of donating data to researchers, or to mutual support groups. "That could be very liberating," she said. Connelly said this will require work: "We need to find a way to free the data we have in the applications it's currently trapped in," although she added that the privacy of patient data would continue to be protected by the health service. However, in response to a question, she said that patients would be able to transfer their data to places that are less secure than NHS systems, and outside England, where all the data currently resides. "It's up to you," she said.