The white paper titled “From Evolution to Revolution: Building the 21st Century Genomic Infrastructure” was released by Joel White, Executive Director of the Health IT Now Coalition, and by Josh New, a Policy Analyst, at the Center for Data Innovation, at a Capitol Hill briefing on genomics on July 23rd.
As Joel White explained, “The President’s Precision Medicine Initiative aims to collect genomic and clinical data from more than one million volunteers. In order to make full use of this information we need a functional and broad-based data sharing model that can only be reached through cooperation of both private and public sectors.”
The white paper is based on ideas discussed by participants at a data driven medicine conference held last December in Washington. D.C. To take the ideas from the conference to the public, Joel White and Joshua New presented the following panelists that were heavily involved in contributing their ideas and thoughts to the development of the white paper:
- Annerose Berndt, DVM, PhD, Vice President, for Analytics and Information at UPMC
- Toby Bloom PhD, Deputy Scientific Director, for Informatics, at the New York Genome Center
- Yentram Huyen PhD, East Coast Health and Life Sciences Business Innovation Manager for Intel
- Brian Wells, Associate VP, Health Technology and Academic Computing at Penn Medicine
- Jonathan Sheldon, PhD, Global Vice President for Healthcare at Oracle.
Joel White and the panelists’ highlighted key areas where innovation in the private sector and from research projects are already occurring. However, further actions are needed from Congress, the Administration, and the private sector to remove the obstacles towards achieving precision medicine.
The white paper’s first recommendation emphasizes the need to improve interoperability. The panelists agreed that stronger federal requirements are needed to ensure that genomic and other health data can be retrieved and compared across health record systems. Right now, interoperability operates as a top down process with the federal government issuing rules and EHR vendors and their customers finding ways around them.
The next recommendation is to ensure that patients and private sector are actively engaged and patients need to continuously donate their data but this will require extensive education and ongoing communication between participants and researchers. The private sector has proven solutions that are currently in place, so the Administration should leverage that knowledge along with those relationships and put them to work.
The panelists all agreed that privacy and consent laws need to be reevaluated to account for modern scientific and technological advances. As the panelists explained, today’s privacy laws pose a challenge to the big data analytic techniques needed to sift through and find patterns in many trillions of data points.
Using data requires separate clearance and sometimes separate consent by each individual whose health data is being reexamined. These rules while protecting patient privacy, can also prevent drug companies from identifying or contacting these patients that would most likely benefit from clinical trials.
The white paper is available at http://healthitnow.org, www.datainnovation.org/?p=4624.