Navigating the Health Data Ecosystem

Chapter 1. The “Six C’s”: Understanding the Health Data Terrain in the Era of Precision Medicine

Background

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. This report begins the process of sharing what we’ve learned.

Introduction

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 ...