Care.data: NHSE and the Government Finally See Some Sense – but at What Cost?

August 25th, 2016 | Posted by Lynn Strother in Health | Human Rights | Older People

Do you remember the care.data fiasco of the last few years?  How the NHSE are spending millions of pounds it does not have on expensive consultants, consultation events, publicity information, and IT systems (it would be interesting to know how much the NHSE has spent on the various IT systems over the last 5 years which still don’t communicate or work!).  Not to mention the cost to the various organisations who spent time attending these consultations and organising their own focus groups.

The proposal was that all patients’ medical records, including personal details, were to be collected and then sent to a central database where various universities, research institutions, and commercial firms would have access to the data. At times it was suggested that this would be sold to insurance firms and several other groups – including pharmaceutical companies.

Although it was stated that this data collection would be anonymous, I don’t think many people truly believed that, and there were serious concerns in respect of data protection and confidentiality. We were told that there was the option to opt out, but this was all rather muddled depending on your GP surgery. There were also very real concerns with respect to the security of the system, not only from hackers, but also from lost memory sticks – something that happens on a regular basis in government departments…

Then there were the delays – the British Medical Association, The Royal College of General Practitioners and other medical bodies were very against the proposals for a variety of reasons. Yet they were particularly concerned by the prospect of losing patients’ trust if it was thought that everything discussed during a consultation was to be sent to a government database.  I do find it strange that there appears to have been little or no conversation with GPs and the various medical institutions to get their agreement before spending millions of pounds on the project. Yet then again, I am not a NHSE or government policy officer, just a member of the public who uses the service – so what would I know?!  If there were consultations with GPs, then why did they still go ahead with the proposals when it was obvious that there was opposition from the very people who would have to implement them?

Now the government/NHSE has scrapped this flagship care.data project.  This decision followed the publication of two reports that support greater transparency over what happens to the information, as well as opt outs for patients who want their data seen only by those directly caring for them. Both reviews by the National Data Guardian and the CQC recommended tougher measures to keep people’s medical information secure and confidential.

The Caldicott review recommended much more extensive dialogue with the public as to how their information can be used. The report also advised that the public be provided with information about the benefits of sharing data, e.g. research into their diseases, what else the data may be used for, and how they can opt out if they don’t want their data shared.  The public must be given confidence that their private information is kept secure and used in their best interests.

In light of these recommendations the NHSE took the decision to close the care.data programme.

BUT

The government and the health and care system remain absolutely committed to realising the benefits of sharing information as an essential part of improving outcomes for patients. This work will now be taken forward by the National Information Board in close collaboration with the primary care community.  You will notice that patients and the general public are not mentioned as part of the collaboration – have they not learned any lessons from the last fiasco?!

So what does this mean?  Is this another attempt to get their hands on our personal medical records under a different name?  Will you have any more confidence in this than the last attempt?  How much is this new consultation going to cost our cash strapped NHS and will patients really see any benefit, or will it just be helpful to marketing companies?

Please let us know if you are aware of – or invited to – any consultations around this subject and if you also attended the care.data consultations advise how the two differ.

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