The Center for Data Innovation and Health IT Now hosted the conference “Data-driven Medicine in the Age of Genomics” on December 11, 2014, to foster discussion about how the benefits of genomics data can be fully realized in healthcare. Congressional staffers, academics, researchers, and healthcare practitioners shared their thoughts on a series of roundtable discussions, titled “The Promise of Genomics”, “Data Sharing, Interoperability, and Data Analytics”, and “Legislative and Regulatory Barriers to Progress”. Keynote speakers included David Ledbetter, Executive Vice President and Chief Scientific Officer at Geisinger Health System and Senator Michael Bennet (D-CO). There were also presentations from Kethan Paranjape, General Manager Life Sciences and Analytics at Intel, Dr. Jane Yu, Senior Advisor for Healthcare and Life Sciences at IBM, and Dr. Dave Dworaczyk, Director of Life and Health Sciences and Strategic Development at Oracle.
The first panel, “The Promise of Genomics,” explored the future of genomics from clinical and research perspectives and highlighted the need for more robust analysis of genomics data and increased collaboration and sharing in the healthcare community. Panelists stressed the importance of increasing the quality and quantity of genomics data available to researchers to better understand the underlying biological principles behind serious medical conditions. Recommendations included collecting more data on things like lifestyle factors and environmental conditions, as well as sequencing genomes at birth and assigning unique medical identifiers to patients to easily monitor changes throughout a patient’s lifespan. Panelists noted the need for collaboration between healthcare institutions and an ongoing dialogue between geneticists, researchers from other fields, public agencies, and global organizations for such solutions to be viable. The potential of genomics data was unanimously praised, with applications ranging from better understanding of complex gene interactions to aiding in the design and evaluation of clinical trials.
The second panel, “Data Sharing, Interoperability, and Data Analytics,” focused on data-sharing and interoperability as social and technical necessities for advancing genomics research. Topics discussed included the interoperability benefits of using public application programming interfaces (API) instead of a fragmented network of private APIs, as well as following the NIH’s example of implementing a genomic data sharing policy by adopting similar policies at private institutes and other organizations in the research pipeline. Several speakers noted that inefficient, inflexible data structures and systems remain significant impediments to genomics researchers.
The final panel, “Legislative and Regulatory Barriers to Progress,” was comprised almost exclusively of congressional staffers. Panelist identified several legal obstacles to things like genomics data collection and sharing and offered suggestions to address these challenges, such as updating and clarifying regulations to encourage innovation. Senator Bennet (D-CO) addressed this topic as well, citing the need for clearly defined Food and Drug Administration (FDA) regulations and review processes concerning increasingly popular health apps and wearable devices. Panelists stressed the need for positive public awareness on the benefits of data sharing and interoperable health networks to help develop these good practices. Panelists agreed that federal health agencies have a responsibility to demonstrate how genomic data, and medical data as a whole, can be used for research and advancing public health without sacrificing security.
Overall, the conference showcased the clear opportunities to use genomic data to improve how the medical community understands diseases and approaches treatments and the consensus that more work needs to be done to develop the health data ecosystem to fully realize these benefits.