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In Scotland, the first step towards a centralised medical database has already occurred. Described as the Emergency Care Summary (ECS), patient consent has been obtained by a single mailing to each household. Using this as an assumption of informed consent, data has been extracted from general practice clinical systems.
We had misgivings about this consent process being adequate. Considering all the options, including the possibility of an ‘opt-in’ mandate, we decided to mail patients individually to offer an opt-out of this information sharing.
We have so far received 287 opt-out requests for a list size of 1710. For Scotland, there have been a total of 620 opt-outs for a population already included of 5 million. Our figure of 16.5% compares to a national average of 0.01%; a factor 1330 times greater.
Our results question whether the governments' strategies of obtaining consent for the release of such information reflect proper process. Many patients refused because they were unaware that consent to allow data migration had been obtained.
There is still time to evaluate the usage of the ECS to see how often it has been used and to define the benefits of better clinical outcomes. In the final analysis, before we can obtain informed consent for these new and relatively untrialled programs, we need to understand the benefits for individual patients clinical outcome as well as being clear about the extent of any potential for inappropriate or malicious use of information.