Questions of consent are coming to the fore in the UK where the Summary Care Record is being rolled out. As reported June 15th in the Telegraph. There has been a significant debate about whether patients should have to opt out of having their information loaded up into a central repository or whether they should be given the opportunity to opt in to this decision.
The opt out option is easier for hospitals/organizations as the onus is placed on the patient to decide whether to participate or not. The opt in option requires that significant expense, time and work be undertaken to notify all patients about their rights and ask their permission to upload data.
From a privacy and consent perspective, the opt in is the desired approach, however the cost and resource requirements of widespread opt in programs are so high that they have been abandoned in many settings that have been attempted.
The Summary Care Record is being rolled out nationally and each primary care trust is sending letters to patients in its area informing them that their surgery [medical practice - Ed] is about to upload their records unless they choose to opt out.
Doctors warned that this meant patients were not giving proper consent and a lack of response was taken as their agreement to their records being uploaded. There was also widespread criticism of the opt out process as a form was not included in the main pack and there was confusion over where it should be sent.
What are your thoughts? Should we always require an opt in or do the needs of the system to operate efficiently and at reasonable cost trump the opt in requirement?
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