Patients Willing to Share Data for Research—but Not Everything

Most patients would donate their health data and biospecimens for biomedical research, but few are willing to share everything, and institutions’ current consent practices don’t accommodate this, a study found.

The findings indicate more research institutions should shift how they ask patients for permission to use their data from an all-or-nothing approach to one that relies on a tiered consent model that allows for partial use of electronic health information.

Institutions rarely use a tiered consent model, often due to criticisms that it’s too cumbersome and not practical to pick and choose which information a patient can share in a ...