Patients remain ill-informed about changes to medical records

3797160719_337b4742e7_bLast week we wrote about the leaflet that every household will be receiving from NHS England detailing serious changes to the way our medical records are shared. We warned that such a lacklustre scheme to inform the public is arguably illegal under data protection law and goes against the Government’s commitment to give patients control over their medical records.

Today, the British Heart Foundation, Arthritis Research UK, Cancer Research UK, Diabetes UK, the Academy of Medical Sciences, the Medical Research Council and the Wellcome Trust have launched an advertising campaign encouraging people not to opt out of the initiative.

Quite simply, patients should not be forced, or feel pressured, to take part in a scheme that involved sharing details contained in their medical records. Especially at a time when NHS England has failed to properly inform patients about how medical records will be shared and which organisations will be able to see them.

The research charities are urging patients not to opt out of the NHS data sharing scheme. Despite the fact that they have admitted that 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.

Of course, many patients will see the benefit of using medical data for research purposes, however others will feel uncomfortable with sensitive information potentially being shared with third parties outside of the NHS. This is a decision for individual patients to make. It is in the interest of these research charities that as many people remain in the scheme as possible, however they have a responsibility to ensure that NHS England has properly notified patients about the changes to their medical records so that they can make an informed decision about whether to participate in the scheme.

Academics and GP’s alike have also raised their personal concerns about the scheme. The Daily Mail has reported that at least two GPs are so opposed to the scheme they have removed the thousands of patients on their books from the scheme unless they have specifically asked to be included. One of the doctors, who is based in Oxford, has said that he believed the scheme breached data protection laws.

The fact remains that if NHS England wants to share patients’ information with increasing amounts of third parties they have a duty to take extra steps to ensure that patients feel as though they have control. The Department for Health must stand by the Governments commitment to give patients more control over their medical records and recognise that this leaflet drop is wholly unacceptable.

Posted by on Jan 13, 2014 in Data Protection, Medical Records, NHS | 7 Comments