Date: June 13, 2016
The Health Datapalooza conference is always an exciting event for us at PCORnet, the National Patient-Centered Clinical Research Network. It is the foremost gathering of people who are passionate about using data to improve patient outcomes and who are pioneering innovations that drive health policy and practice. Healthcare executives, researchers, patient advocates, and government agency representatives attended this year’s conference in May in Washington, DC. U.S. In addition, Vice President Joe Biden gave a keynote address about data sharing and transparency.
PCORnet had a fantastic experience at this year’s Datapalooza, as it was an opportunity for us to showcase how we are harnessing the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
PCORnet collaborators Adrian Hernandez, MD, MHS, FAHA, Keith Marsolo, PhD, and Russ Waitman, PhD, spoke at Health Datapalooza. Hernandez gave an overview of PCORnet. Marsolo presented PCORnet’s model for sharing data. Waitman contributed to a session describing how variability in clinical information across electronic data sources hinders the exchange, collection, and analysis of health data.
We asked them how PCORnet’s approach meshes with Datapalooza’s themes.
Why do we need national networks for collecting health data?
Adrian Hernandez: Our current clinical research system is well intentioned but flawed. The most recent analysis by the Tufts Center for the Study of Drug Development revealed that the average cost to develop and gain marketing approval for a new drug in the United States is a whopping $2.6 billion. The process often takes longer than a decade. Combining data from patients across the country should significantly bring down the costs and time.
The greatest challenge to our current system is its research outcomes, many of which are not answering the questions that matter most to people. By offering a national data network that weaves patients, clinicians, researchers, and health systems into our clinical research process, PCORnet offers an entirely new way to conduct clinical research—one that is not only less costly but more efficient, and that answers the real questions people have about their health.
Listen to Hernandez’s call for the development of a national evidence generation system and view his Datapalooza slides explaining the vision and mission of PCORnet.
How do you ask a research question at hundreds of institutions and get back results you can trust?
Keith Marsolo: Data are often represented differently across different institutions, making the conduct of trustworthy research from these sources difficult. PCORnet answered this challenge by creating its Common Data Model, which allows us to put data from multiple sources into a common format, or language. In doing so, we have paved the way for research analysis on a national scale.
From the response of attendees at my presentation, it is clear that our Common Data Model excites stakeholders, and it should. The development of this model is a tremendous accomplishment that has eliminated what was previously a major barrier to querying data from multiple sources and obtaining reliable results.
View Marsolo’s presentation slides.
How can we translate electronic health records and other clinical data into meaningful insights?
Russ Waitman: In a relatively short time, we have come a long way toward digitizing health records that were previously on paper. However, we haven’t yet complemented this work with a national focus on how we can use these data. So on one hand, we have these amazing new data sources that promise greater insight into our health. But generalizing data across institutions is difficult compared to doing so with relatively simple insurance claims files.
PCORnet is answering this challenge by bringing together patients, clinicians, and health systems. Together we can test the hypothesis that when standardized via the Common Data Model, electronic health records and other data can easily and meaningfully lower the costs of clinical research. If it works, the payoff will be tremendous in advancing clinical research and healthcare delivery.
View slides from Waitman’s panel here.
How does PCORnet’s mission align with Vice President Biden’s call to action?
Adrian Hernandez: Vice President Biden’s call to action at the conference was clear: build a network centered around patients, and make it accessible, shareable, and meaningful. That is exactly what we are doing at PCORnet.
As father to a son with cancer, Biden surely felt the frustration of knowing that although large amounts of data are available from multiple records and institutions, useful insights remained just out of reach. Beau Biden didn’t live long enough to reap the benefits of PCORnet, but we hope that future generations will glean valuable insights from this resource.