The availability of large, deidentified health datasets has enabled significant innovation in using machine learning (ML) to better understand patients and their diseases. However, questions remain regarding the true privacy of this data, patient control over their data, and how we regulate data sharing in a way that that does not encumber progress or further potentiate biases for underrepresented populations. After reviewing the literature on potential reidentifications of patients in publicly available datasets, we argue that the cost—measured in terms of access to future medical innovations and clinical software—of slowing ML progress is too great to limit sharing data through large publicly available databases for concerns of imperfect data anonymization. This cost is especially great for developing countries where the barriers preventing inclusion in such databases will continue to rise, further excluding these populations and increasing existing biases that favor high-income countries. Preventing artificial intelligence’s progress towards precision medicine and sliding back to clinical practice dogma may pose a larger threat than concerns of potential patient reidentification within publicly available datasets. While the risk to patient privacy should be minimized, we believe this risk will never be zero, and society has to determine an acceptable risk threshold below which data sharing can occur—for the benefit of a global medical knowledge system.

We present the first full description of Media Cloud, an open source platform based on crawling hyperlink structure in operation for over 10 years, that for many uses will be the best way to collect data for studying the media ecosystem on the open web. We document the key choices behind what data Media Cloud collects and stores, how it processes and organizes these data, and its open API access as well as user-facing tools. We also highlight the strengths and limitations of the Media Cloud collection strategy compared to relevant alternatives. We give an overview two sample datasets generated using Media Cloud and discuss how researchers can use the platform to create their own datasets.

We present the first full description of Media Cloud, an open source platform based on crawling hyperlink structure in operation for over 10 years, that for many uses will be the best way to collect data for studying the media ecosystem on the open web. We document the key choices behind what data Media Cloud collects and stores, how it processes and organizes these data, and its open API access as well as userfacing tools. We also highlight the strengths and limitations of the Media Cloud collection strategy compared to relevant alternatives. We give an overview two sample datasets generated using Media Cloud and discuss how researchers can use the platform to create their own datasets.

No abstract