This appeared last week, with the UK seemingly trying again after the Kelsey led care.data debacle:
Alarm at ‘secret’ NHS meeting with tech firms on sharing patient data
Mark Bridge, Philip Aldrick
NHS chiefs held a closed meeting with giant technology and pharmaceutical companies to consider how billions of pounds could be made from a central database of patient records.
The scheme better to harness anonymised medical data would address concerns that the health service had given away intellectual property rights too cheaply in existing deals with companies such as Google’s DeepMind.
Local NHS IT officers have criticised the service’s leaders for discussing it “behind closed doors”, saying that a lack of transparency could erode public trust. The NHS denies acting secretively.
At the meeting in London in October, officials including the chairman and the chief executive of NHS England, Lord Prior of Brampton and Sir Simon Stevens, met representatives of companies including Microsoft, Amazon Web Services and Astrazeneca. NHS data is of great interest and monetary value to US and global companies because of the service’s universal coverage.
According to The Register, a technology website, the meeting discussed the creation of a repository that could be available within two years, bringing together data about all patients in England sourced from GPs, NHS trusts and directly from medical devices — capturing the “full journey of care from cradle to grave”.
By replacing fragmented data repositories with one comprehensive, centralised resource, the intention would be to enable more “effective, efficient and safe patient care”. It could also provide companies and researchers with real-time access to anonymised medical and genetic records, in return for cash or other benefits.
Analysis of the data using artificial intelligence from tech giants could enable earlier diagnoses, the development of new drugs and tracking of wider trends in public health.
A study this year by the consultant EY found that NHS data could be “worth £9.6 billion a year through operational savings, improved patient outcomes and economic benefits”. That breaks down as £5 billion of benefits to the NHS and £4.6 billion to patients. NHS England disputes the estimates.
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Analysis
There is enormous value to be had from NHS patient records, both in improved health and by creating a life science industry that uses data to develop new cures.
There is enormous value to be had from NHS patient records, both in improved health and by creating a life science industry that uses data to develop new cures.
No country has such a large cradle-to-grave single provider healthcare system as the UK. If data is curated well, artificial intelligence can be used to defeat disease. EY estimates that the annual benefit to the UK could be £10 billion in both better patient outcomes and stronger economic growth. But it will not be easy. First, personal medical records must be handled extremely sensitively. Second, the benefits will only be realised by investing in systems that are useable by algorithms. Healthcare experts estimate that a fully traceable database may cost £5 billion.
The government lacks the funds and expertise to deliver this, which is why it is talking to tech giants. The Amazons and Microsofts have deep pockets and the skills. They are now in the early stages of discussing commercial terms with the NHS. Vitally, this process must be transparent. In 2016, a similar data sharing programme, Care.Data, was ditched over concerns that patient records would be sold to insurers. The government has since published a commercial partnership framework for data sharing. One firm, Sensyne Health, has even given the NHS a tenth of its equity in return for data access. It’s a start, but leaked stories about secret meetings with US tech companies do the government no favours — it must be an honest advocate.
More here:
The one thing that will save us in Australia is that the data held in the #myHealthRecord is of such low quality and so incomplete it will be hard to make any real sense of it.
If you value your health information privacy it would be sensible to distance your self from the system as far as possible.
David.
4 comments:
Data aggregation only works if there is a consistent definition of data across all sources. Health data just isn't like that.
Robodebt was caused by the ATO and Centrelink having different definitions regarding payments. the ATO sees data over one time period, Centrelink keeps its data over different time periods. When comparing the two there are discrepancies but not what Centrelink thinks they are. The only difference being the way the data was reported, not that people had been overpaid.
Health data is far, far more complex. Expecting data from different sources to agree is naive. In fact, the more data you have, the greater the uncertainties.
As usual, throwing technology at a health care problem without understanding the data is a recipe for disaster.
Is not this all just a repeat of the same old claims and aspirations that were being bandied around the UK, USA, Australia over a decade ago? How does one account for this?
Easy. Those proponents and consultants from a decade or more ago have all moved on to greener pastures. Today's proponents aren't interested in history. They are young and enthusiastic. They know better than those who came before them. So the whole cycle starts all over again.
@5:15 PM. ... and this time around the bureaucrats will be seduced into spending huge amounts of money with the mega firms like Amazon, Microsoft and Google.
Understanding the 'problem' the 'data' and the 'complexities, cultures and idiosyncracies' of the health system are not something they want to know about.
If you are selling a solution, any problem will do, if the customer is gullible enough.
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