A single English database harvested from GP and hospital records will be created later this year. It will cover the entire population of the United Kingdom and will be controlled by an NHS information centre. This data will be made available to buy for university research departments but also for drug and insurance companies. They will be able to access patient information including their mental health conditions and any diseases as well as smoking and drinking habits. Privacy experts expressed concerns that patients will have no way of knowing who has access to their medical records and for what reason.
However advocates of the NHS say that sharing data will lead to medical advances which will ultimately save lives as it will allow researchers to investigate drug effects and hospital surgical units performance by tracking impact on patients.
The companies will have to apply to buy the patient data and if the application is approved the records will be cleared of some personal information to make them more anonymous - a process known as “pseudonymisation”. Although Mark Davies, the centre’s Public Assurance Director has stated that there was a “small risk” that some patients could be “re-identified” as many health sector companies have their own medical data that could be matched against the "pseudonymised" records
This month NHS England are sending out a leaflet titled Better Information Means Better Care to 26m households, to ease the public concern.
Julia Hippisley-Cox, a Professor of General Practice at Nottingham University who sits on the NHS's confidentiality advisory group – stated that "if extraction [sale] of identifiable data is to go ahead, then patients must be able find out who has their identifiable data and for what purpose".
Hippisley-Cox added that "there should be a clear audit trail which the patient can access and there needs to be a simple method for recording data sharing preferences and for these to be respected".
Although not everyone is in favour for patients to have knowledge of who has their data. A GP has rejected this notion and defended the database saying that "I am tempted to say that we will have 50 million auditors [referring to England's population] looking over our shoulder."
He also said "I am not sure how helpful in the NHS the distinction between public and private is these days. Look at Dr Foster [which] is a private company that used data to show significantly how things can be improved in the NHS and revealed what was going wrong at Mid Staffs. The key test is whether the data will be used to improve patient care."
NHS England are going to publish its own assessment for the privacy risks involved this week and have have specified that one of the main aims of care.data is to "drive economic growth by making England the default location for world-class health services research".
Original Article The Guardian
About Pathway Software
Pathway Software (www.pathwaysoftware.com) specialises in the design and development of patient information systems for Allied Health professionals.
Its flagship product, Therapy Manager, is an Electronic Patient Record (EPR) system specifically designed for Therapy Services to provide decision makers with the ability to track and manage clinical activity and analyse cost of care by patient, episode or service. The system also demonstrably reduces administration time and the costs of managing Therapy Services.