21st Century Cures Roundtable Touts Consumer Control of Health Data as Way to Increase Innovation and Privacy

Today, the House Energy and Commerce Committee hosted its second 21st Century Cures roundtable to discuss “bridging the gap” between digital medicine’s advances and regulatory policies. This roundtable follows the Committee’s recently released white paper entitled Leveraging Technology to Advance the Discovery, Development, and Delivery of Better Treatments and Cures. The stated goal of the 21st Century Cures Initiative is to “to streamlin[e] the drug and device development process” in order to “unleash[e] the power of digital medicine and social media at the treatment delivery phase.”

Roundtable participants were drawn mainly from the technology and private sectors. There was a participant from the Food and Drug Administration (FDA), Dr. Jeff Shuren Director of the Center for Devices and Radiological Health, and a patient advocate from the American Diabetes Association, Ms. Gina Gavlak. These two made opening remarks alongside participants from IBM, 23andMe, Intel, Athenahealth, Inc, and Pervasive Health. Additionally, public health administrators from the Cleveland Clinic, the Oregon Health and Science University, and West Health participated. A handful of Committee members were also present and directed comments and questions to the group. They were headed by Committee Chairman Fred Upton (R-MI)(
opening statement) and Rep. Diana DeGette (D-CO) (press release) who together announced this initiative on May 1, 2014.

Issues discussed by the participants included the benefits of large scale data collection and the resulting analytics; barriers created by government regulations and statutes such as the Health Insurance Portability and Accountability Act (HIPAA); and the potential for business-style models and consumer empowerment to accelerate innovation. Additionally, participants highlighted subjects that could specifically contribute to positive outcomes for the issues mentioned above. These topics, woven throughout the roundtable, were (1) interoperability of patient data, (2) reimbursement structures, and (3) cloud-computing capabilities.

For a full summary of the roundtable, please contact Jessica Golibart at jgolibart@thornrun.com.