Between Access and Privacy: Challenges in Sharing Health Data

Objective: To summarize notable research contributions published in 2017 on data sharing and privacy issues in medical informatics. Methods: An extensive search of PubMed/Medline, Web of Science, ACM Digital Library, IEEE Xplore, and AAAI Digital Library was conducted to uncover the scientific contributions published in 2017 that addressed issues of biomedical data sharing, with a focus on data access and privacy. The selection process was based on three steps: (i) a selection of candidate best papers, (ii) the review of the candidate best papers by a team of international experts with respect to six predefined criteria, and (iii) the selection of the best papers by the editorial board of the Yearbook. Results: Five best papers were selected. They cover the lifecycle of biomedical data collection, use, and sharing. The papers introduce 1) consenting strategies for emerging environments, 2) software for searching and retrieving datasets in organizationally distributed environments, 3) approaches to measure the privacy risks of sharing new data increasingly utilized in research and the clinical setting (e.g., genomic), 4) new cryptographic techniques for querying clinical data for cohort discovery, and 5) novel game theoretic strategies for publishing summary information about genome-phenome studies that balance the utility of the data with potential privacy risks to the participants of such studies. Conclusion: The papers illustrated that there is no one-size-fitsall solution to privacy while working with biomedical data. At the same time, the papers show that there are opportunities for leveraging newly emerging technologies to enable data use while minimizing privacy risks.