The UK’s Information Commissioner has issued new guidance to members of the public on the government’s plans to develop a national system of electronic care records, based on enquiries that have been received.
Overall the Commissioner backs plans for a national system of summary records but says he plans to keep a close eye on how the accuracy of information is ensured, the way people are kept informed and how they can access their records.
According to the Information Commissioner’s guidance, individuals will have the option to "limit the future scope of the information on the Summary Care Record or the option not to have one at all".
In December the Department of Health rejected hundreds of requests from patients to opt out of having their details loaded onto the system after a newspaper printed an opt-out coupon for readers.
Then in a dramatic u-turn health minister Lord Warner later in the same month said that patients would after all have the right to request their details not be uploaded onto the spine.
The Information Commissioner says that patients will be notified before any upload occurs and given a chance to respond. After uploads of data onto the Summary Care Record have occurred individuals will subsequently be "able to choose to remove some or even all of the information initially uploaded", or to keep the uploaded information but keep it invisible through mechanisms such as the sealed envelope.
The Commissioner says that he has been consulted by NHS Connecting for Health, the DH agency responsible and that based on the information provided can see the potential benefits of plans for electronic care records.
Setting out the development of summary care records the Commissioner says that he understands that a small number of PCTs will be selected as early adopters, who in Spring 2007 will "begin to upload information from the health records held by GPs".
"The Commissioner understands that the early adopters will be subject to evaluation, including by independent researchers. Later in the year additional areas will begin to implement the new systems, informed by learning from early adopters."
In addition, the Commissioner goes on to stress that the initial content of each Summary Care Record will be "restricted to information relating to current medication, known allergies and adverse reactions".
He adds: "This information will form the Summary Care Record and no other medical information will be uploaded to it prior to a discussion between you and your GP."
He states that based on the information provided by CfH he is "content with their general approach". The Commissioner stresses, however, that the NHS "must continue to comply with the Data Protection Act 1998 and this is vital to guarantee that public confidence is maintained".
The Commissioner adds that he will "be monitoring the implementation and operation of the NHS Care Records Service" to ensure patients are provided with adequate information and choices and that their health data is maintained in a safe and secure way".
As part of this monitoring the Commissioner says he will continue to engage with CfH and pay close attention to a number of issues "in particular those relating to the accuracy of the information to be uploaded, the way people are informed about the changes and the systems in place to allow people, to access their own information."
Link
The Information Commissioner’s view of NHS Electronic Care Records
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