Patient privacy campaigners are outraged by the launch of a media campaign promoting NHS England’s new care.data scheme.
The advertising campaign has been funded by organisations, some of which have lobbied to access information held in patients’ medical records.
An example of one of the adverts shows a picture of a young boy with the text: “Hello, I’m Peter. We haven’t met before by one day you could save my life. Sharing your patient record can help researchers save and improve lives.”
medConfidential have called the campaign a “blatant appeal to emotion” to encourage people not to opt out of having confidential medical details from their GP record uploaded in identifiable form.
The care.data scheme will begin uploading confidential medical information in identifiable form from GP records in England from Spring 2014.
Recent studies from the Wellcome Trust show that at least 28% of people are concerned, and 10% are ‘maybe concerned’ about allowing access to their medical records for research.
Phil Booth, coordinator of medConfidential said: “Promoting a scheme that is based on dodgy ‘presumed’ consent is bad enough, but trying to convince people not to protect their family’s medical confidentiality using such overtly manipulative imagery borders on unethical. The money would have been better spent building ways for people to express a positive choice to participate in research.
“The Wellcome Trust’s and MRC’s own studies show that around a quarter of the population don’t want their sensitive health details being shared, even for medical research. And this is their absolute right. So if opt out rates turn out significantly lower than 25% this Spring, it won’t be an indication of success. It’ll point more to a massive whitewash.”
NHS England has yet to comment.
