Building Data Registries with Privacy and Confidentiality for PCOR

Sharing and reusing clinical data is key to enabling patient-centered outcomes research (PCOR). Data registries established for conducting PCOR must ensure appropriate privacy and confidentiality protections. We propose to develop a framework for patient-centered statistical health information release (pSHARE), which extends our SHARE project, for building patient-centered and privacy preserving statistical data registries for PCOR. Given original patient records, pSHARE builds a set of pre-computed summary statistics with differential privacy and statistical integrity guarantee, and an optional set of synthetic records that is consistent with the statistics, on which exploratory PCOR studies can be conducted before access to the raw data is required. Instead of one-size-fits-all, we take a patient-centered approach by taking into account varying patient privacy risks and preferences. The study has three specific aims: 1) develop methods for establishing data registries using private data with differential privacy accounting for PCOR data characteristics, 2) develop methods for establishing data registries utilizing both private and consented data, 3) develop methods for evaluating and tracking patient privacy risks and establishing data registries taking into account fine-grained patient privacy preferences.

Through close engagement with patients, clinicians, patient privacy advocates, and other stakeholders through panels, we expect our research to be patient-centered and ultimately help realize the vision of PCORI.

We acknowledge the generous support of a PCORI grant from the Patient Centered Outcomes Research Institute.

Any opinions, findings, and conclusions or recommendations expressed in the project material are those of the authors and do not necessarily reflect the views of the sponsors.