A new campaign group, medConfidential, held its first conference day in Soho, London, yesterday - with a view to discussing the way medical records are obtained and stored, lobbying for explicit consent and confidentiality.
MedConfidential has in its ranks campaigners from other prominent organisations like Privacy International, Big Brother Watch, NO2ID, FIPR, TheBigOptOut, and Terri Dowty, former director of ARCH.
Director of Liberty, Shami Chakrabarti, lent her support to the campaign and expressed her shock on the policy of GP data extraction from a "human rights perspective" - which threatens to remove ownership of personal data from the patient.
The campaign group says it is independent and non-partisan, that works with patients, medics, service users and care professionals to "defend and enhance confidentiality across the health and social care arena".
At an event in Soho, London yesterday, some concerned campaigners raised cases where the lack of confidentiality and culture of note-taking on patient records has actively contributed to misjudgments in care.
One woman said she knew of a parent who went to three separate GPs, convinced something was wrong with her child. Referring to the notes on the first record, the others agreed - but when the parent sought a specialist it turned out her child had a rare bone condition.
Another said she knew of instances where women are committing suicide as a result of post natal depression, because they feel shamed and unable to seek assistance in case notes were made on their records.
Although explicit consent should be sought by way of a GSM1 form before procedures are performed - for example, taking blood pressure - this is often not the case. Results are then uploaded onto medical IT systems without the explicit consent of the patient, attendees said. Another attendee agreed that if patients wish to opt out, in many cases they are coercively pressured into agreeing to have their records managed and stored as data - or be refused treatment.
Campaigner Terri Dowty told TechEye: ""This campaign is vital because the public has got to know that we're all going to lose the medical confidentiality that we take for granted.
"Nobody has even been told what's going on, let alone asked if they want to share the private matters they discuss with their doctors," Dowty said. "And it will stay that way unless we can make enough noise to alert them."
MedConfidential was founded this year "in direct response to the imminent and serious threat posed by radical changes in the way the NHS Commissioning Board collects and passes on patient health information from NHS health record systems in England," the group's website reads.