The name says everything data sharing shouldn’t be – and the report shows why.
We welcome another confirmation that organisations can maintain trust via transparency and shared knowledge.Data projects, including commercial data projects, can be handled safely, if the people in charge choose to do so. When they don’t patients and citizens get nervous and trust collapses.
Care.data and others tried the “One Way Mirror” approach, and this report names “context collapse” as the point of public concern. Patients care what happens to their data and are wary about how it could be used beyond the context of their own healthcare, and so simple, complete, accessible and truthful explanations to patients are necessary. Otherwise, context collapse is certain, and like care.data, confidence collapse is sure to follow.
(MedConfidential Coordinator Sam Smith sat on the advisory group for this study)