"health data ecosystem" entries

Ian Eslick, Tuhin Sinha, and Rob Rustad contributed to this post.

Download a free copy of “Navigating the Health Data Ecosystem,” the first in a series of reports covering our recent investigation into the health data ecosystem, funded by the Robert Wood Johnson Foundation.

A few years ago, O’Reilly became interested in health topics, running the Strata RX conference, writing a report on How Data Science is Transforming Health Care: Solving the Wanamaker Dilemma, and publishing Hacking Healthcare. Our social network grew to include people in the health care space, informing our nascent thoughts about data in the age of the Affordable Care Act and the problems and opportunities facing the health care industry. We had the notion that aggregating data from traditional and new device-based sources could change much of what we understand about medicine — thoughts now captured by the concept of “precision medicine.”

From that early thinking, we developed the framework for a grant with the Robert Wood Johnson Foundation (RWJF) to explore the technical, organizational, legal, privacy, and other issues around aggregating health-related data for research — to provide empirical lessons for organizations also interested in pushing for data in health care initiatives. Our new free report, Navigating the Health Data Ecosystem, begins the process of sharing what we’ve learned.

After decades of maturing in more aggressive industries, data-driven technologies are being adopted, developed, funded, and deployed throughout the health care market at an unprecedented scale. February 2015 marked the inaugural working group meeting of the newly announced NIH Precision Medicine Initiative designed to aggregate a million-person cohort of genotype/phenotype dense longitudinal health data, where donors provide researchers with the raw epidemiological evidence to develop better decision-making, treatment, and potential cures for diseases like cancer. In the past several years, many established companies and new startups have also started to apply collective intelligence and “big data” platforms to health and health care problems. All these efforts encounter a set of unique challenges that experts coming from other disciplines do not always fully appreciate. Read more…