Health privacy campaigners medConfidential have teamed up with leading public health professional and privatisation critic Professor Allyson Pollock to draft an amendment to the Care Bill that would - they say - protect both vital research data and proper privacy safeguards.
Campaigners suggest the amendment buys time by bringing the controversial Health & Social Care Information Centre back under Parliamentary control til the legal provisions can be properly sorted out.
Last week the government gave assurances that they would - through the Care Bill currently before parliament - create ‘legal bars’ to the sale of medical records for commercial purposes.
But yesterday Phil Booth of medConfidential told OurNHS that the government amendments were “just not sufficient and in some cases complete nonsense”.
He added, “The knee-jerk amendments the government has laid they are so poorly drafted, they both threaten legitimate research and actually throw our health data open to exploitation by pretty much anyone.”
Public health professionals like Pollock are concerned that without safeguards like parliamentary control of care.data, public confidence in the confidentiality of their personal medical information will be so undermined that many will opt out, damaging the ability of health professionals to use data for genuinely beneficial research.
Pollock commented: “Our systems of public data have been carefully built up over centuries and the government is wantonly destroying both the systems and the public trust and faith in them. It is essential that these be protected and trust restored so that the health of the population can be properly monitored and promoted.”
She added “Enormous cuts are being made to the Office of National Statistics, with millions diverted to HSCIC spending it on Care.data misinformation and leaflets. The Census is also threatened. All the building blocks of public health and universal health care are being demolished.”
If the amendment is not taken today - in what is expected to be a stormy afternoon in parliament - Lord David Owen has indicated he is ready to lay the amendment when the Care Bill returns for final amendments in the Lords, as it is expected to later this month.