Building Data Registries with Privacy and Confidentiality for PCOR

Survey: Patients Attitude towards Differential Privacy- page 2
Differential Privacy Data Registries

Institutions can use de-identified data to build data storages. De-identification can be an important tool for protecting privacy while still preserving the utility of clinical data for large scale analytic purposes. However, de-identification has raised increasing concerns. Recently, a new method called Differential Privacy has emerged.

Differential Privacy: Mechanism that preserves the privacy of sensitive patient information. It guarantees that unauthorized user does not have any additional information about your sensitive health information.

Please watch the following video prior to answering questions


Q5) To what extent is the concept of differential privacy clear and understandable to you?
Very unclear
Somewhat unclear
Neither clear nor unclear
Somewhat clear
Very clear
Q6) How likely is it that you would agree to share your data with a data storage if differential privacy protections were in place?
Very likely
Somewhat likely
Neutral
Somewhat unlikely
Very unlikely

Differential Privacy: Mechanism that preserves the privacy of sensitive patient information. It guarantees that unauthorized user does not have any additional information about your sensitive health information.

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

Q7) Would you feel comfortable when contributing your data to one or more data registries if differential privacy protections were in place?
Yes. Continue to question 9 through 15
No. Skip to question 16 in Next Page
Q8) Compared to other people, I would classify myself as having:
Stringent privacy preferences
less-stringent privacy preferences
No privacy preferences
Q9) How much do you agree or disagree with this statement: "A patient has the right to know the estimated privacy risk of using her medical data in a data storage."
Strongly agree
Somewhat agree
Neither agree nor disagree
Somewhat disagree
Strongly disagree
Q10) How comfortable would you feel sharing your medical information if you knew who was accessing it?
Very comfortable
Somewhat comfortable
Neither comfortable nor uncomfortable
Somewhat uncomfortable
Very uncomfortable

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

Q11) How comfortable would you feel contributing your data to data storages that allow you to have control over your data?
Very comfortable
Somewhat comfortable
Neither comfortable nor uncomfortable
Somewhat uncomfortable
Very uncomfortable

Differential Privacy: Mechanism that preserves the privacy of sensitive patient information. It guarantees that unauthorized user does not have any additional information about your sensitive health information.

Q12) If a system used differential privacy, I would be more likely to contribute my medical data for medical researches purposes.
Definitely
Probably
Not sure
Probably not
Definitely not

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

Accumulated privacy risk: Privacy risk is increased when a patient’s records are present in more than one data storage.

Q13) If I had a tool that tracks the accumulated privacy risks from participating in multiple data storages, then I would be more willing to contribute my data to multiple storages.
Definitely
Probably
Not sure
Probably not
Definitely not
Q14) If i had a tool that tracks what research studies have used my data, then I would be more willing to contribute my health information for the purpose of medical research.
Definitely
Probably
Not sure
Probably not
Definitely not

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