Building Data Registries with Privacy and Confidentiality for PCOR

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

    Q1) Which of the following would keep you from electronically sharing your health information for research purposes? Select all that apply.

    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

    Q2) To what extent is the concept of de-identification for preserving patient privacy clear and understandable to you?

    Very unclear
    Somewhat unclear
    Neither clear nor unclear
    Somewhat clear
    Very clear

    Clinical data storage: Records information about the health status of patients and the health care they receive over varying periods of time

    Q3) How likely would you be to agree to share your health information if it were de-identified as part of a data storage for research purpose?

    Very likely
    Somewhat likely
    Somewhat unlikely
    Very unlikely
    Q4) For the following types of de-identified health information, please indicate whether you would be willing to share it with a data storage.
    Agree Disagree Neutral
    Lifelong health conditions report (asthma, disabilities, cancer, etc.)