“It has still not been thought through.”
Birmingham MP Roger Godsiff has called for a halt to the relaunch of care.data, the Government’s flagship patient record sharing scheme, to ensure that the many remaining problems with the proposals are fixed before confidential patient data is extracted.
Roger has tabled an Early Day Motion to Parliament, calling on the government to withdraw its proposals until after the forthcoming general election. Speaking from Westminster, he said: “I very much support the plans by NHS England to relaunch care.data in test or pathfinder regions before rolling it out across the country, but there are still too many issues that need to be resolved before this can safely take place.
“To rush this new initiative through before the general election is madness, particularly as it is asking people to take fundamental decisions about what happens to their highly personal medical data. I appreciate that we are talking about test areas, but very often what happens in test areas goes on to be accepted practice without any further consideration.
“It would be far better to wait until the dust has settled after the general election than rushing in now with a scheme that still has so many massive flaws. This haste suggests that those pushing the scheme, who are eager to get their hands on patient data, are concerned that a new Government might act to protect patient confidentiality and insist on a scheme that respects patient choice. Patient data is not a commodity to be traded, although there are those who disagree.”
The Sparkbrook & Small Heath MP was highly critical of the care.data initiative in its initial form — a programme to extract confidential patient data collected by both GPs and hospitals and sell it to companies which would use it for profit-making activities. NHS England eventually paused the programme last year, after repeatedly insisting that the roll-out would take place as originally scheduled.
He also believes that there are grounds for believing that Parliament has been misled, as it received assurances from NHS England that the care.data pathfinder communications would not take place before the Confidentiality Advisory Group Regulations (CAG) set up under the Care Act 2014 had been laid before Parliament. These regulations would set up at the outset strong legal safeguards for data handling, but now cannot be introduced because of the shortage of Parliamentary time before the election.
Roger concluded: “Current proposals lack clarity, transparency, and respect for patients. It’s a different set of problems but a repeat of the same haphazard approach. I call on the Secretary of State for Health, Jeremy Hunt, to delay the pathfinder launch until after the general election at the very least, so that the many outstanding issues can be resolved in a considered way. Care.data was rushed through last time oblivious to the concerns of many doctors, patients and MPs.
This time NHS England should pause and get it right, to ensure that it does not end up with yet another failed launch and a massive public backlash against a scheme that does not respect patients’ confidentiality. Utilising patient data for research has the potential to do so much good, and it would be a real shame if this opportunity was missed due to the sheer incompetence and stubbornness of those responsible for organising care.data, and their refusal to listen to the patients who the NHS exists to care for.”