Survey: Patients Attitude towards Differential Privacy
The objective of this survey is to investigate individual concerns
for health privacy in context of sharing medical data for contributing
for data registries and explore ways/techniques to empower patients in
order to help them to make informed privacy decisions.
De-identified Data Registry
Electronic Health Record (EHR): Refers to an individual patient's medical record in digital format. It contains a patient's medical history, diagnoses, medications, treatment plans, immunization dates,
allergies, radiology images, and laboratory and test results.
Medical Data Privacy: The right of an individual to make choices with respect to the collection, use and
disclosure of their individually identifiable health information.
Please watch the following video prior to answering questions
When organizations collect medical data that contain identifying information such as names, Social Security Numbers (SSN), or mailing addresses, there can be a conflict between
data usability and privacy protection. De-identification can be an important tool for protecting privacy while still preserving the utility of clinical data for large scale analytic purposes.
De-identified Data: Refers to patient data
from which all information that could reasonably be used to identify the
patient has been removed (e.g., removing name, address, SSN, etc.)
Please watch the following video prior to answering questions
Q4) For the following types of de-identified health information, please indicate whether you would be willing to share it with a data
storage.