Dr. David Ledbetter Named Chief Clinical and Research Officer of UPN
The UPN will operate as a collaborative group of nonprofit academic health centers and other health systems participating in clinical research that is enabled by the UPN through biopharma funding. The initiative aims to advance medical science and identify the genetic roots of human health and disease, by building a large database of research participants’ de-identified clinical and genomic data that will be available for research purposes – by researchers at UPN member health systems and biopharma companies.
“The UPN aims to accelerate the scientific advancement and clinical implementation of precision medicine, in a manner that provides truly unprecedented return-of-value to our health system members and their research participants, via clinical whole genome sequencing, genetic screening, genetic counseling, research tools, data assets, collaborative interoperability and a significant incremental funding stream, at no charge to the health systems or patients. With the ability to extend invitations to participate to patients across multiple health systems, UPN will be able to provide biopharma researchers unprecedented access to highly harmonized de-identified whole genome and longitudinal EHR data regarding highly specific cohorts drawn from thousands of research participants,” said William Moss, CEO of Seven Bridges and the UPN.
“Our unique approach enables us to simultaneously optimize clinical and scientific research value on demand, without making it needlessly difficult to combine de-identified sequencing data and EHR content for large populations, resulting in a highly efficient operating model,” Moss continued.
The UPN will operate across many disease states and therapeutic areas, including rare, complex neurodegenerative, psychiatric and autoimmune diseases and disorders, as well as cancer, cardiology and common diseases such as diabetes. The network will begin by aggregating very specific cohorts, measured on the order of thousands of research participants. Ultimately, the UPN’s goal is to include over five million sequenced patient volunteers in its active network.
Patients who volunteer for clinical research studies conducted as part of the UPN will need to provide informed consent to participate and can opt at any time to have their de-identified genetic and clinical data removed from the network’s database. The privacy of research participants will be strictly protected. Only de-identified genomic and clinical electronic health record (EHR) content will be made available via the highly secure database. Such data will be used, as part of institutional review board (IRB)-approved research studies, to understand how genes contribute to or protect against various diseases and influence how well patients respond to treatment. In some cases, genomic sequencing may reveal genetic alterations that could change the course of a patient’s treatment.
Washington University School of Medicine in St. Louis and its affiliated health system, BJC HealthCare, is the first academic health system to join the UPN as a founding member. The network will expand to include other health systems and consented research participants from those institutions.
“Washington University has a long-standing commitment to advance precision medicine and bring more personalized treatments to our patients,” said David H. Perlmutter, MD, Executive Vice Chancellor for Medical Affairs, the George and Carol Bauer Dean, and the Spencer T. and Ann. W. Olin Distinguished Professor at the School of Medicine. “The UPN will be an important part of making this a reality by providing a platform to aggregate clinical and genomic data from research participants and share de-identified data with researchers. The UPN strategy takes another important step in positioning our communities for a new era of precision medicine, with more personalized diagnoses and treatments across many diseases.”
With the launch of the UPN, Seven Bridges has assembled a world-class executive leadership team, including Chief Clinical and Research Officer Dr. David Ledbetter. Dr. Ledbetter was previously executive vice president and chief scientific officer at Geisinger Health System where he was the principal investigator for the MyCode biobank and precision health program that exceeded 175,000 patients with exome sequence data linked to rich, longitudinal EHR and other clinical data. He has also been a professor of human genetics at Emory University School of Medicine, the University of Chicago School of Medicine, and Baylor College of Medicine.
“Previous experience from large population genomics projects have shown that healthcare data combined with genomics data can rapidly accelerate knowledge to help prevent disease or to improve patient outcomes, as well as identify new drug targets for biopharma pipelines. Until now, these valuable data sets have been confined to single health systems rather than aggregated and shared across multiple health systems, or have been siloed by individual commercial entities. The Unified Patient Network will unlock the long-promised benefits of our national investments in health IT and population scale genomics,” said David Ledbetter, PhD, Chief Clinical and Research Officer for the UPN. “This unique multi-sided network will bring these stakeholders together with the aim of advancing precision medicine through a genomics-enabled learning health system, whereby patients can have their genomes sequenced free of charge, giving researchers greater insights into patient health risks, and biopharmaceutical companies to more easily identify cohorts of patients as part of drug discovery efforts, thereby lowering everyone’s costs.”
Phillip Payne, PhD, Associate Dean for Health Information and Data Science and Chief Data Scientist at Washington University School of Medicine said, “By bringing health systems together, we can enroll more patients into UPN studies, helping to speed innovative research while also protecting patients’ identities and confidentiality. Genome sequencing is expensive and out of reach for most patients, but the UPN is providing such sequencing to research volunteers free of charge. This opens up the technology to many more people, including those in under-resourced communities, and is a huge win from an access and affordability standpoint.”
The UPN will receive funding from biopharma companies that request access to research participants’ de-identified genomic and health information for the companies’ own research. A portion of that funding will be returned to the health systems in the UPN, Payne said, to support efforts to improve their patients’ access to medical care and drive the institutions’ research and teaching missions.
The UPN has assembled a dynamic team of partners and supporters to advance the high level of collaboration required to build, grow and sustain the network. The ecosystem includes Seven Bridges, Genome Medical, Amazon Web Services, the Broad Institute of MIT and Harvard, Illumina and others.
Partnering closely with Seven Bridges, the UPN is leveraging the Seven Bridges highly-secured research and development ecosystem as the interoperability infrastructure for the network community, and enabling exploration and analysis for complex cohort stratification across populations of millions of patients, via the ARIA™ scientific intelligence system. The content will be made available only to credentialed researchers as part of IRB-approved research studies, as mutually agreed to by the UPN and the health system members, by leveraging Seven Bridges’ proven security, authentication and authorization protocols and technologies.
The UPN is also working with Genome Medical, the leading telehealth provider of genetics and genomics care. “We are pleased that our genomic specialists and technology-enabled clinical support tools will expand access to the benefits of genomic science and medicine within the network,” said Lisa Alderson, CEO and co-founder of Genome Medical. “By helping patients and their clinicians better understand and interpret genomic data, health care can best meet the needs of individual patients.”
About Seven Bridges
Seven Bridges enables researchers to extract meaningful insights from genomic and phenotypic data in order to advance precision medicine. The Seven Bridges Ecosystem consists of a compliant analytic platform, intelligently curated content, transformative algorithms, unprecedented access to federated data sets, and expert on-demand professional services. This holistic approach to bioinformatics is enabling researchers — at the world’s leading academic, biotechnology, clinical diagnostic, government, medical centers, and pharmaceutical entities — to increase R&D efficiency, enhance the hypothesis resolution process, isolate critical biomarkers, and even turn a failing clinical trial around while also reducing computational workflow times and data storage costs. To learn more, visit sevenbridges.com or follow us on LinkedIn and Twitter.