Consistent minority of patients opting out of having data shared
New research from the Health and Social Care Information Centre (HSCIC) has found a consistent minority of patients opting out of having their data shared for purposes beyond direct care.
The HSCIC data shows that as of this month 2.2% of patients, or 1 in 45, opted out of having their data shared.
Type 1 and type 2 opts-outs, which were offered as part of the care.data programme back in 2014, are presented at GP practice level. Type 1 counts are based on the number of times the opt-out code occurs within GP records, which will include instances where the opt-out is recorded for the same patient more than once, such as where the opt-out is recorded at more than one practice.
But the latest HSCIC data revealed there are 1,461,877 instances of type 1 opt-outs occurring within GP records, preventing these records from being shared outside the practice for purposes other than direct care.
Overall, 95.7% of CCGs have up to 5% of patients opting out of data sharing.
The care.data programme, which aims to take data from GP surgeries and other healthcare services and put it into a central database, has been blighted with issues since its inception and has come under fire from MPs, campaigners and health professionals.
Substantive progress is not expected on the project until after Dame Fiona Caldicott publishes her review on sharing records and patient consent, which is expected later this summer.
Last year, Kingsley Manning, the chief executive of the HSCIC, admitted that patient requests not to share their data had been ignored because failure to share data would affect the quality of patient care.
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