The NHS is in the news again for its proposed use of personal data, the issue is obviously a very divisive one, with even advocates of open data use wary when it comes to the NHS using their personal data.
Currently, an expert panel on Bioethics from Nuffield are considering the NHS’s plans to combine patient records into a national database, one of the key issues appears to be that privacy may not be guaranteed.
Under the government’s care.data scheme, databases of anonymised patient records and information on hospital admissions would be created. The scheme has faced constant delays amid privacy and consent concerns.
So is it that people just do not trust the NHS and government to look after our data? Or is there a general consensus that no one should use your data? Well it doesn’t seem to be that, as people have been agreeing for private companies to use our personal data for years, Google, Amazon, Tesco, Facebook to name a few all use personal data for a multitude of reasons.
In the U.S, concerns over health data being used to help treatment and improve the running of private healthcare systems has not been met with such vehement disapproval. SAP’s HANA device is frequently appearing in news articles related its data analytics device being put to use by medical institutes for research or to help improve care.
IBM’s Dr Watson, is being applied to health research, the company states that, 80% of medical data is unstructured but is clinically relevant. "Getting access to this valuable data and factoring it into clinical and advanced analytics is critical to improving care and outcomes, incentivizing the right behavior and driving efficiencies."
Fletcher Allen is another example in the U.S where IBM systems were used to help put refined analytic information into the hands of practitioners, in order to improve the quality of care. This is the kind of system that would benefit the NHS to fill in some of its Big Data black holes. Perhaps the issue is one of openness, and therefore the NHS should work with a big private analytics firm with a trusted record. Although, inviting a private company into the NHS in any form is yet again likely to cause concern.
One of the issues that the NHS has had has been the failure of its consent options, it was revealed that the company had disregarded tens of thousands of requests by patients to opt out of the data sharing records. However, it was decided that this would affect treatment patients would receive, but surely, the NHS treats potentially 60 million people so surely a few tens of thousands opting out would not significantly reduce the quality of data?
The NHS is losing its PR battle, within the private sector the opt in/opt out is greatly simplified, if you agree to the terms of service and want to use our product then you as the consumer agree to allow us to access your data, if not then you always have the option of not using that service or product. The problem for the NHS is that for many millions there is no other option for healthcare.
In a letter sent to MP’s that was seen by the Guardian, Kingsley Manning, chief executive of the Health and Social Care Information Centre, said that those who opted out may not have: "understood that this will mean that as a result they will not be approached for direct care services such as bowel screening."
It is easy to see what has been causing all the delays, and it is clear that if the NHS were to use Big Data correctly then they would see large benefits. The NHS may just need to stop dragging its heels and implement a real data analytics solution, make savings and improve customer care, once the improvements are seen then public opinion is bound to change.