UPENN-Penn-CMU Digital Health Privacy Initiative

The project objectives and deliverables outlined in our grant application were as follows: Complete data collection to obtain browsing histories and ad captures resulting from browsing history Hire and train 4 student research assistants Develop student-centered digital health privacy training modules for future trainees Conduct data analysis to determine what ads are health-related and which contain misinformation or advertisements for sham medical products Prepare manuscripts detailing our findings for publication Prepare funding application We have been able to complete data collection for the browsing histories, consistent with our timeline which exceeds our initial goal of 60 individuals. We have recruited and trained a talented group of student research assistants from Penn and Carnegie Mellon, whom we worked with to mentor in the creation of the rubric for data analysis. We have made substantial progress in analyzing data and working with the RAs who have been able to stay with the project beyond their summer internship and plan to continue with this beyond the grant. We have published multiple papers over this time period in top journals, resulting in substantial press (Forbes, The Observer, etc.) as well as policy changes (correspondence with White House Senior Health Policy Advisor as well as the Federal Trade Commission’s privacy lawyers). Our work has deeply influenced the Department of Health and Human Services Office of Civil Rights' recent guidance to hospital legal departments interpreting the type of website tracking we have extensively documented as a potential HIPAA violation. The data recently collected on the CMU cluster will also serve as pilot RCT data that can be submitted in support of a funding application to the NIH. We have begun to prepare this funding application and plan to submit this in the coming months.