Tuesday, December 31, 2019
Is NHS sharing patient data cause for alarm?
Over at the Times, the paper reports that NHS chiefs have 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.
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.
At the London meeting the NHS told more than 30 invited guests about nine potential models for how the increased exploitation of patient data could be funded. These included arrangements whereby the NHS would charge fees to companies and researchers for accessing data, or would waive fees in return for services such as storage and analysis of data. In other models the NHS would freely provide data in return for a share in any intellectual property derived from it or an equity stake in the company involved.
The sharing of data in this way is one benefit that many US drug companies hope to derive from any trade deal after Brexit. However, for now the issue appears to be about transparency. It is vital that the public realise who has access to their data and the purposes for its use.
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.
At the London meeting the NHS told more than 30 invited guests about nine potential models for how the increased exploitation of patient data could be funded. These included arrangements whereby the NHS would charge fees to companies and researchers for accessing data, or would waive fees in return for services such as storage and analysis of data. In other models the NHS would freely provide data in return for a share in any intellectual property derived from it or an equity stake in the company involved.
The sharing of data in this way is one benefit that many US drug companies hope to derive from any trade deal after Brexit. However, for now the issue appears to be about transparency. It is vital that the public realise who has access to their data and the purposes for its use.
