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.
I think 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.
The new care.data pathfinder communications come with their own set of problems. Patients can opt out of the new scheme as they could the old, but the new opt-out only applies to GP data and excludes hospital data. It is unclear what guidance will be available, if any, for those who wish to opt out of both. Does this mean that hospital data will be taken anyway, regardless of whether or not patients consent to this? Has it been made clear to the participants in the pathfinder areas that this exercise is not merely a “test” and that their data will actually be used?
During the previous, failed attempt to launch care.data, some NHS patients opted out of having either their GP data or their hospital data extracted, but not both, while some opted out of both because they dug down and discovered that to fully opt out you had to complete not one but two forms.
However, all of these patients will receive the new care.data pathfinder communications, leaving many confused about whether or not they need to opt out again. The only way that these patients would be able to resolve the issue would be to visit their GP, who is now the designated data controller under the new GP fund holder arrangements.
It is already becoming more and more difficult to get a GP appointment, with waiting times lengthening. This situation will be made much worse if, instead of only having to provide healthcare, GPs then also have to spend time discussing data protection with huge numbers of confused and worried patients. Industry sources calculate that over 1 million people nationally may have opted out first time around, but for some reason NHS England cannot filter these individuals out of future communications because this data has not been “extracted”. The data is in fact on GP’s own systems and according to industry sources is “available” to NHS England.
The scope for confusion does not end there. Errors defining the consent codes made by NHS England last time around meant that people who opted out could be classed as opting out of everything, including ‘direct care’, and might therefore be excluded from appointments for nationally-run screening programmes such as cancer or heart disease. There is already growing evidence that a number of people who opted out last time around missed a call up for bowel cancer screening. These issues are yet to be resolved, but NHS England still plans to go ahead with the roll-out in the pathfinder regions before taking the time to fix the many problems with the scheme.
And why does NHS England plan to scrap the Independent Advisory Group (IAG), which has been overseeing the care.data project? The IAG is set to be scrapped at the end of June and its functions replaced by two other bodies, a decision which many GP campaigners describe as a ‘ludicrous’ particularly so at a time when independent scrutiny is needed more than ever during the roll out of the trials.
The approach to care.data still doesn’t instil confidence that second time around the purpose of the exercise is to improve patient care rather than to make large quantities of personal medical information available for commercial exploitation and make a tradable commodity out of health data. The Secretary of State for Health is already making huge amounts of data available through his discretionary powers at cost.
That is why “everybody’s” data is needed because the real pot of gold at the end of the rainbow is to be able to track individuals through life, sick or fit and healthy. Once that genie is out of the bottle the real prospect develops that we will have introduced our very own health apartheid”. It will of course been have done for “our own good”.
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.”
I have tabled an Early Day Motion about care.data, which reads as follows:
CARE.DATA AND PATHFINDER AREA LAUNCH
That this House views with great concern plans by NHS England to relaunch the care.data initiative in trial regions in the run-up to the general election; recalls that the previous attempt to launch care.data was an unmitigated disaster that had to be abandoned due to widespread public opposition; believes that Parliament has been misled, as it received incorrect assurances that care.data pathfinder communications would not take place before the Confidentiality Advisory Group Regulations (CAG) under the Care Act 2014 had been laid before Parliament and approved, thereby introducing strong legal safeguards for data handling before extraction began; further believes that current proposals lack clarity and transparency, as the current opt-out is now for GP data only, excluding hospital data which requires a further, separate opt-out procedure; notes that those who have already opted out from having both sets of data extracted will receive the same communication in the pathfinder regions telling them to opt out again and seek any further clarification from their over-stretched GP, who is unlikely to have time to discuss data protection with large numbers of patients; further notes that previous consent definition errors which impact on the ability of patients to receive direct care have yet to be remedied; and calls on the Government, as a matter of urgency, to delay the pathfinder launch at the very least until after the general election, so that outstanding issues can be resolved in a considered and transparent manner.