National Academies Press: OpenBook
« Previous: Appendix A: Workshop Agenda
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

B

Speaker Biographical Sketches

Sandy Aronson, M.A., is the executive director of information technology for Partners HealthCare Personalized Medicine. His team develops the information technology infrastructure required to support the evolution and practice of genetics-based personalized medicine in both patient-facing and laboratory settings. The system ecosystem that the team maintains enables a real-time continuous learning process that allows laboratories to harness their clinical testing flows to advance the knowledge surrounding genetic variation. The infrastructure makes it possible for laboratories to keep treating clinicians up to date through patient specific alerts as the laboratories improve variant classifications. Mr. Aronson’s team developed and continuously enhances the GeneInsight Suite (GIS). GIS consists of GeneInsight Lab, GeneInsight Clinic, and the functionality that underlies the GeneInsight Network, including the VariantWire share-and-share-alike network. The team works with Partners HealthCare Information Systems to maintain the integration between GeneInsight Clinic and the Partners HealthCare electronic health record. In addition to GeneInsight, the team developed the original GIGPAD system to support laboratory processing, including its case management system component; it is developing an Olego management system; and it assists the Partners HealthCare Personalized Medicine Bioinformatics Team in the development and maintenance of bioinformatic pipeline infrastructure.

Previously, Mr. Aronson was an information technology consultant to the biotechnology industry, working for Tribiosys. Mr. Aronson also held several positions with Sapient Corporation, was a strategic consultant for Monitor Company, and founded LearningAction, a Web-based training company now part of Best Software. Mr. Aronson holds a

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

master’s degree in organizational behavior and a bachelor’s degree in computer science from Stanford University. He also holds a master’s degree in biology from Harvard Extension School.

Dixie Baker, Ph.D., is a senior partner at Martin, Blanck & Associates, where she provides consulting services in the areas of health information technology (HIT), electronic health records, privacy and security, and the sharing and protection of genomic data. As a consultant to the Genetic Alliance and its Patient Powered Research Network project, she is participating as a member of the Data Standards, Security, and Network Infrastructure Task Force of the Patient-Centered Outcomes Research Institute National Clinical Research Network project. Since 2009, Dr. Baker has served as a member of the HIT Standards Committee (HITSC), a federal advisory committee created by the American Recovery and Reinvestment Act to recommend standards, implementation specifications, and certification criteria for electronic health record technology. Currently serving her second term, Dr. Baker chairs the HITSC Transport and Security Workgroup, and she previously chaired the Nationwide Health Information Network power team, which developed metrics for determining when a technology standard is ready to be considered as a national standard. Dr. Baker co-chairs the Security Working Group of the Global Alliance for Genomics and Health, a coalition to enable the sharing of genomic data among more than 40 countries. She is a fellow of the Healthcare Information and Management Systems Society. In 2010, Dr. Baker was selected as one of the “Federal 100” top executives from government, industry, and academia who had the greatest impact on the government information systems community. In 2013, www.healthcareinfosecurity.com selected her as one of its inaugural “Top 10 Influencers in Health Information Security.”

Christopher Chute, M.D., Dr.P.H., is section head and a professor of medical informatics at the Mayo Clinic in Rochester, Minnesota. He received his undergraduate and medical training at Brown University, his internal medicine residency at Dartmouth, and his doctoral training in epidemiology at Harvard University. He is board certified in internal medicine and clinical informatics, and is a fellow of the American College of Physicians, the American College of Epidemiology, and the American College of Medical Informatics. He became founding chair of the Division of Biomedical Informatics at Mayo in 1988 and served as division chair for 20 years. He is a principal investigator on Mayo’s

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

Clinical and Translational Science Awards (CTSA) informatics core, the eMERGE cooperative agreement on genotype-to-phenotype association, the Pharmacogenomics Research Network Ontology Resource, the LexGrid projects, and a co–principal investigator on the National Center for Biomedical Ontology. Recent grants as principal investigator include the Department of Health and Human Services/Office of the National Coordinator (ONC) SHARP (Strategic Health IT Advanced Research Projects) on Secondary EHR Data Use and the ONC Beacon Community (co–principal investigator). Dr. Chute is the medical director of health information management at Mayo, chairs data governance, and serves on Mayo’s enterprise Information Technology Oversight Committee, and CTSA executive committee. He is presently the chair of the ISO Health Informatics Technical Committee (ISO TC215), and he also chairs the World Health Organization ICD-11 Revision. He serves on the HL7 advisory board. Recently held positions include service as an index member on the Health Information Technology Standards Committee for ONC in the U.S. Department of Health and Human Services and the initial chair of the Biomedical Computing and Health Informatics study section at the National Institutes of Health.

Lynn Etheredge currently heads the Rapid Learning Project. His career started at the White House Office of Management and Budget (OMB), where he was OMB’s principal analyst for Medicare and Medicaid and led its work on national health insurance proposals. Mr. Etheredge headed OMB’s professional health staff in the Carter and Reagan administrations. He is a founding member of the National Academy of Social Insurance. His contributions have ranged broadly across Medicare, Medicaid, health insurance coverage, managed competition in health care, retirement and pension policies, budget policy, and information technology.

Mr. Etheredge proposed the concept of the “rapid-learning health system” in a special issue of Health Affairs in 2007 and is collaborating widely in developing this approach. Rapid-learning initiatives are now generating comparative effectiveness research, a national system of learning networks and research registries covering more than 150 million patients, national biobanks with linked electronic health record and genomic data, a new Medicare and Medicaid Innovation Center (with $10 billion of funds), rapid-learning systems for cancer care and pediatrics, and a new National Science Foundation–supported science of learning systems.

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

He serves on the editorial board of Health Affairs and is author of more than 85 publications. He is a graduate of Swarthmore College.

Tom Fowler, Ph.D., is currently on assignment from Public Health England (PHE) to Genomics England as its director of public health. Dr. Fowler is working to support the science stream around rare diseases, infectious diseases, and cancer. He is also a consultant in Epidemiologist PHE’s Field Epidemiology Services, where his focus is infectious disease control. He is an honorary research fellow in public health in the University of Birmingham. He was editor-in-chief of the 2011 Volume 1 of the Chief Medical Officer of England’s Annual Report and co-editor of Volume 2. The first of these volumes was a comprehensive review of health data for England, and the second volume was an assessment of the future challenges raised by infectious diseases and antibiotic resistance. Dr. Fowler continues to work with the chief medical officer of England on thought leadership around public health, including well-being and antimicrobial resistance. He is also active in the public health genomics community and was a member of the Public Health Genomics European Network meeting that led to the Declaration of Rome 2012 summary of the European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-Based Information and Technologies.

Charles Friedman, Ph.D., is the Josiah Macy Jr. Professor and chair of the Department of Learning Health Sciences at the University of Michigan Medical School. He joined the University of Michigan in September 2011 as a professor of information and public health and the director of the University of Michigan health informatics program. Throughout his career, Dr. Friedman’s primary academic interests have combined biomedical and health informatics with the processes of education and learning. Dr. Friedman’s department is a “first in the nation” medical school academic department dedicated to the sciences of learning at all levels from scale: from learning by individuals to learning by teams and organizations and to learning by ultra-large-scale systems such as entire nations.

Before coming to the University of Michigan, Dr. Friedman held executive positions at the Office of the National Coordinator for Health Information Technology (ONC) in the U.S. Department of Health and Human Services: from 2007 to 2009 as deputy national coordinator, and from 2009 to 2011 as ONC’s chief scientific officer. While at ONC, Dr. Friedman oversaw a diverse portfolio which included early steps toward the

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

development of a nationwide learning health system, the education of the nation’s health information technology (HIT) workforce, research to improve HIT, program evaluation, and international collaboration. He was the lead author of the first national HIT strategic plan, which was released in June 2008, and he led the development of a memorandum of understanding on eHealth between the European Union and the United States.

Prior to his work in the government, Dr. Friedman was associate vice chancellor for biomedical informatics and the founding director of the Center for Biomedical Informatics at the University of Pittsburgh. Prior to his time in Pittsburgh, he served in a range of faculty and administrative roles in the School of Medicine at the University of North Carolina at Chapel Hill.

Dr. Friedman is an elected fellow and past president of the American College of Medical Informatics and an associate editor of the Journal of the American Medical Informatics Association. He was the 2011 recipient of the Donald Detmer award for policy innovation in biomedical informatics.

Geoffrey Ginsburg, M.D., Ph.D., is the founding director for the Center for Applied Genomics at the Duke University Medical Center and the founding executive director of the Center for Personalized and Precision Medicine in the Duke University Health System. He is a professor of medicine, pathology, and biomedical engineering at Duke University. He is an internationally recognized expert in genomics and personalized medicine with funding from the National Institutes of Health, the U.S. Department of Defense, the U.S. Air Force, the Defense Advanced Research Projects Agency, the Gates Foundation, and industry. Prior to working at Duke he was at Millennium Pharmaceuticals Inc., where he was vice president of molecular and personalized medicine and was responsible for developing pharmacogenomic and biomarker strategies for therapeutics.

He serves as an expert panel member for Genome Canada, as a member of the Board of External Experts for the National Heart, Lung, and Blood Institute, as co-chair of the Institute of Medicine’s Roundtable on Genomic-Based Research for Health, as a member of the advisory council for the National Center for Accelerating Translational Science, as co-chair of the Cures Acceleration Network, as an advisor to the Pharmacogenetics Research Network, and as a member of the World Economics Forum’s Global Agenda Council on the Future of the Health Sector.

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

Colin Hill, M.S., co-founded GNS Healthcare in 2000 and has served as its chief executive officer since then. He brings years of hands-on scientific experience to his role, with expertise in the areas of computational physics, systems biology, and personalized medicine. He also serves as chairman of Via Science, a leading big data analytics company focused on business intelligence, finance, and economic forecasting. In addition, Colin served on the board of directors of AesRx, a biopharmaceutical company dedicated to the development of new treatment for sickle cell disease. Mr. Hill was the founding chairman of O’Reilly Media’s Strata Rx, one of the first health care big data conferences.

In 2004, Mr. Hill was named to Massachusetts Institute of Technology’s TR100 Technology Review list of the top innovators in the world under the age of 35. He is a frequent speaker at national and international scientific and industry conferences and has been quoted in numerous publications and television programs, including the Wall Street Journal, CNBC Morning Call, Nature, Forbes, Wired, and The Economist. He graduated from Virginia Tech with a degree in physics and earned master’s degrees in physics from both McGill University and Cornell University.

Gail Jarvik, M.D., Ph.D., received her Ph.D. at the University of Michigan and her M.D. at the University of Iowa in the medical scientist training program. She completed her residency in internal medicine at University of Pennsylvania and a fellowship in medical genetics at the University of Washington. Dr. Jarvik holds the Arno G. Motulsky Endowed Chair in Medicine and heads the Division of Medical Genetics and the Northwest Institute of Genetic Medicine. She cares for adult medical genetics patients. Her research focuses on the genetic basis of common diseases and the implementation of genomic medicine. Additionally, she has active research in biomedical ethics, including returning genomic research results to subjects. She is a principal investigator in the Electronic Medical Records and Genomics, or eMERGE, and the Clinical Sequencing Exploratory Research consortia.

Andrew Kasarskis, Ph.D., is the vice chair of the Department of Genetics and Genomic Sciences and the co-director of the Icahn Institute for Genomics and Multiscale Biology at Mount Sinai Hospital. His research is focused on developing and applying technology to biological problems including pathogen surveillance, pharmacogenomics, and the genetics of

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

sleep. Prior to working at Mount Sinai he held positions at Pacific Biosciences, Sage Bionetworks, and Merck, and he has more than a decade of experience managing research and technology development projects in software engineering, drug development, human and mouse genetics, and other applications of biological research. Dr. Kasarskis holds a Ph.D. in molecular and cellular biology from the University of California, Berkeley, as well as a B.S. in biology and a B.A. in chemistry from the University of Kentucky.

Stephen Leffler, M.D., is the chief medical officer at The University of Vermont Medical Center and a professor of surgery at the University of Vermont College of Medicine. Appointed in 2011, he is responsible for medical staff affairs, the Jeffords Institute for Quality, technology management, and ethics, and he also participates in strategic planning and leads continued development of a regional integrated system of care, drawing on his experience working with other hospitals and physicians in the area. Dr. Leffler served as the medical director of the emergency department at The University of Vermont Medical Center until October 2011 and served as president of the medical staff at The University of Vermont Medical Center from 2010 to 2011. He has served on numerous clinical committees during his more than two decades as an emergency medicine physician, and he has been a key collaborator on significant organizational initiatives, including The University of Vermont Medical Center’s regional ST elevation myocardial infarction project, an innovative program to ensure heart attack victims receive lifesaving care as rapidly as possible. A past president of the Vermont Chapter of the American College of Emergency Physicians, Dr. Leffler received his medical degree from the University of Vermont College of Medicine and completed residency training in emergency medicine at the University of New Mexico before joining the University of Vermont/Fletcher Allen faculty in 1993.

Debra G. B. Leonard, M.D., Ph.D., is a professor and the chair of the Department of Pathology and Laboratory Medicine at The University of Vermont Medical Center in Burlington, Vermont. She is an expert in the molecular pathology of genetic diseases, cancer and infectious diseases, and policy development for genomic medicine. Her M.D. and Ph.D. degrees were completed at the New York University School of Medicine, where she also did her postgraduate clinical training in anatomic pathology, including a surgical pathology fellowship. She is certified by

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

the American Board of Pathology in anatomic pathology and by the American Boards of Pathology and Medical Genetics in molecular genetic pathology. Currently, Dr. Leonard is a member of the Institute of Medicine (IOM) Roundtable on Translating Genomic-Based Research for Health, and she previously served as a member of the IOM Committee on the Review of Genomics-Based Tests for Predicting Outcomes in Clinical Trials. She is a fellow of the College of American Pathologists (CAP) and the chair of CAP’s Personalized Healthcare Committee. Dr. Leonard is a past member of the Secretary’s Advisory Committee on Genetics Health and Society to Secretary Michael O. Leavitt and a past president and 2009 Leadership Award recipient from the Association for Molecular Pathology. She has spoken widely on various molecular pathology test services, the future of molecular pathology, the impact of gene patents on molecular pathology, and the practice of genomic medicine.

Scott Moss leads the research informatics research-and-development team at Epic. His team focuses on designing and developing research-enabling functionality within Epic’s software, including the integration of genomic data into the electronic health record. In addition, Scott has been involved in several industry standards development initiatives, including participation in Integrating the Healthcare Enterprise and Health Level 7.

John David Larkin Nolen, M.D., Ph.D., M.S.P.H., is the managing director of laboratory medicine at Cerner Corporation. He earned his medical degree and his doctorate and his master’s degree in public health and biomedical engineering and his undergraduate degrees in electrical and mechanical engineering from Tulane University in New Orleans, Louisiana. Before coming to Cerner, Dr. Nolen served as the assistant medical director at CSI Laboratories in Alpharetta, Georgia, where he provided medical oversight and diagnostic interpretation in cancer diagnostics. Dr. Nolen also served as chief medical officer for LifeSouth Community Blood Centers in Gainesville, Florida, where he oversaw a large tri-state community blood center. Dr. Nolen completed his clinical pathology residency at Emory University in Atlanta, Georgia. Dr. Nolen completed fellowships in transfusion medicine and hematopathology at the University of Iowa in Iowa City.

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

Alexander Ommaya, D.Sc., M.A., is the senior director of implementation research and policy at the Association of American Medical Colleges (AAMC). In this role he is responsible for enhancing AAMC member impact and capacity in effectiveness and implementation research. Previously as director of translational research at the Department of Veterans Affairs, he was responsible for managing the development of new research activities focusing on health systems improvements, genomic medicine, comparative effectiveness research, and traumatic brain injury. Previously he was director of the Institute of Medicine’s Drug Forum and Clinical Research Roundtable. These multi-stakeholder groups addressed science policy issues concerning the research enterprise and established public–private collaborative research activities. At Blue Cross and Blue Shield of Florida, he directed business knowledge management where his department evaluated and developed improvements for pharmacy, disease, and utilization management programs. Dr. Ommaya has worked for the Agency for Healthcare Research and Quality as a senior advisor for the Office of the Administrator; for the Walter Reed Army Medical Center as a senior researcher for the Defense and Veterans’ Brain Injury Program; for the U.S. Senate as a health policy fellow; and for the National Institute of Mental Health. His previous research focused on neuroplasticity and cortical reorganization; the treatment of malignant glioma; rehabilitation after traumatic brain injury; and health system structures that improve research translation and implementation. Dr. Ommaya received his doctoral degree in health policy and management from Johns Hopkins University, a master’s degree in biopsychology from Mount Holyoke College, and his undergraduate degree in philosophy from Vassar College.

Ketan Paranjape, M.S., M.B.A., is the worldwide director of health and life sciences in the Health Strategy and Solutions Group at Intel Corporation. His role involves managing and partnering with a worldwide cross-Intel team from various business units, sales and marketing, global public policy, corporate affairs, and Intel Labs to develop health information technology strategies and solutions for health and life sciences customers, managing and driving results for multiple, simultaneous projects inside and outside of Intel that cover a wide range of topics from technology assessment to solution blueprints to public policy to innovation processes. With a background in data sciences and bioinformatics, he currently runs a corporate wide Big Data Analytics in Health and Life Sciences program where he is partnering with cross-Intel

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

teams, academic medical centers, original equipment manufacturers, original design manufacturers, and independent software vendors to develop, market, and research specific solutions for payers, providers, governments, life sciences, and pharmaceuticals research and development with the goal of delivering “personalized medicine at the touch of a button . . . everywhere . . . everyday . . . and for everyone.”

In his 17 years at Intel Corp, he has been part of products spanning the entire “compute continuum” from high-performance computing to embedded medical devices in roles encompassing architecture, research and development, strategy, planning, and sales and marketing. He has spent 3 years in Intel Research as the chief of staff and technical advisor to the Intel chief technology officer. He also had a stint at the International Telecommunications Union leading a high-level experts’ group to create technical and procedural specifications for cyber-security. He is currently a faculty member at the International Institute for Analytics and teaches regularly at the Harvard School of Public Health.

Prior to working at Intel, Ketan worked at Medtronics on implantable devices and at Fujitsu on hospital information systems, and he completed internships at Honeywell. He has received M.S. degrees in electrical engineering and computer sciences from the University of Wisconsin–Madison, and his M.B.A. from the University of Oregon. He recently completed a certificate program in leadership strategies for information technology in health care from the Harvard School of Public Health. Ketan has co-authored the book Design of Pulse Oximeters.

Josh Peterson, M.D., M.P.H., is an assistant professor of biomedical informatics and medicine within the Vanderbilt University School of Medicine. Dr. Peterson completed his M.D. degree at Vanderbilt University School of Medicine (1997), an internal medicine residency at Duke University Medical Center (2000), a fellowship in general internal medicine at the Brigham and Women’s Hospital, and a master’s of public health degree at the Harvard School of Public Health (2002). He practices internal medicine at the Vanderbilt Adult Primary Care Clinic.

As a dual appointee within biomedical informatics and internal medicine, Dr. Peterson has played a pivotal role in developing and evaluating clinical decision support to improve drug safety and efficacy and to translate genomic technologies to routine clinical care. He directs the development and evaluation of clinical decision support for patients tested within Vanderbilt University Medical Center’s large-scale

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

pharmacogenomics quality improvement initiative, PREDICT (Pharmacogenomic Resource for Enhanced Decisions In Care and Treatment). He currently leads research funded by the National Heart, Lung, and Blood Institute, the National Human Genome Research Institute, the Centers for Disease Control and Prevention, and the Pharmacogenomics Research Network to evaluate the implementation of PREDICT, including both clinical and cost effectiveness.

Neil Risch, Ph.D., is the Lamond Family Foundation Distinguished Professor in Human Genetics, the director of the Institute for Human Genetics, and a professor and former chair of the Department of Epidemiology and Biostatistics at the University of California, San Francisco (UCSF). He is also adjunct investigator at the Kaiser Permanente Northern California Division of Research. Dr. Risch received his undergraduate training at the California Institute of Technology in mathematics and received his Ph.D. from the University of California, Los Angeles, in biomathematics with a minor in genetics. Prior to coming to UCSF in 2005, Dr. Risch held professorships at Columbia, Yale, and Stanford universities. Dr. Risch’s research interests are in the areas of human genetics, genetic epidemiology, and statistical genetics, where he has published extensively. He is recognized as a highly cited researcher by the Institute for Scientific Information and is the recipient of the Curt Stern Award from the American Society of Human Genetics for his contributions to human genetics. He is an elected fellow of the American Association for the Advancement of Science, the California Academy of Sciences, and the Institute of Medicine of the National Academies. Risch is responsible for the identification of a number of genes underlying important medical conditions such as hemochromatosis and torsion dystonia. He is recognized for his novel statistical approaches to the genetic study of common, complex diseases, in particular genome-wide association studies. Currently, he is co-director of the Research Program on Genes, Environment and Health at the Kaiser Division of Research, and he is the joint principal investigator of the largest genome-wide study to date—of a cohort of 110,000 Kaiser members that is focusing on genetic and environmental factors influencing age-related disease and healthy aging.

Fred Sanfilippo, M.D., Ph.D., is the director of the Emory–Georgia Tech Healthcare Innovation Program, which accelerates innovation in health care services research, education, and delivery, and he is a

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

professor of pathology and laboratory medicine at the Emory School of Medicine and of health policy and management at the Rollins School of Public Health. He has been a physician–scientist leader at Duke University as chief of immunopathology; at Johns Hopkins University as chair of pathology and research director of the Comprehensive Transplant Center; at The Ohio State University (OSU) as dean of the College of Medicine, executive dean and senior vice president for health sciences, and the chief executive officer of OSU Medical Center; and at Emory University as the chief executive officer of the Woodruff Health Science Center, chair of Emory Healthcare, and executive vice president for health sciences. At each institution he led organizational and culture changes resulting in novel interdisciplinary programs and improved academic, clinical, and financial performance. He has been an advisor to numerous universities, companies, and government agencies; the board chair of five nonprofit organizations; and the president of seven professional societies. He has published 250 articles, received more than $30 million in research funding and 3 patents, served on 13 editorial boards, mentored 33 graduate students and fellows, and given more than 200 invited talks. He received a B.A. and an M.S. in physics from the University of Pennsylvania, an M.D. and a Ph.D. in immunology from Duke University, and boards in anatomic, clinical, and immuno-pathology.

Sam Shekar, M.D., M.P.H., is the chief medical officer within Northrop Grumman’s information systems sector. In this capacity he provides strategic clinical direction for the health division and serves as an adviser to health care and public health organizations, government agencies, and customers and partners on technology and policy issues in the medical and public health fields. Dr. Shekar also serves as director of the division’s life sciences program, providing guidance and leadership for Northrop Grumman’s bioinformatics-related programs and initiatives.

Prior to joining Northrop Grumman, Dr. Shekar served as a physician consultant. Previously, he spent more than 21 years as an officer with the U.S. Public Health Service. A former assistant surgeon general and rear admiral, Dr. Shekar has held executive-level health policy and management positions at the Office of the Assistant Secretary for Health, the National Institutes of Health, and the Health Resources and Services Administration (serving as director of the bureaus of primary health care and health professions).

Dr. Shekar has also worked as a medical officer at the Centers for Medicare and Medicaid Services (providing advice and guidance on

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

Medicare coverage and coding policy) and as a medical epidemiologist at the Centers for Disease Control and Prevention. During the record-breaking 2005 hurricane season, he served in Louisiana and Florida, directing the federal health response in Florida to Hurricane Wilma.

Dr. Shekar is a board-certified fellow of the American College of Preventive Medicine and holds a medical license in the state of Maryland. In addition, he is a member of the Institute of Medicine’s Roundtable on Translating Genomic-Based Research for Health and co-chair of its health care systems–focused committee. He earned bachelor’s, master’s of public health, and doctorate of medicine degrees from the University of Michigan in Ann Arbor.

Sharon Terry, M.A., is the president and chief executive officer of the Genetic Alliance, a network of more than 10,000 organizations, 1,200 of which are disease advocacy organizations. The Genetic Alliance improves health through the authentic engagement of communities and individuals. It develops innovative solutions through novel partnerships, connecting consumers to smart services.

She is the founding chief executive officer of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 and has assigned her rights to the foundation. She developed a diagnostic test and is conducting clinical trials.

Ms. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She is the author of more than 90 peer-reviewed articles. In her focus at the forefront of consumer participation in genetics research, services, and policy, she serves in a leadership role on many of the major international and national organizations, including the Institute of Medicine (IOM) Board on Health Sciences Policy, the National Coalition for Health Professional Education in Genetics board, and the International Rare Disease Research Consortium Interim Executive Committee, and she is co-chair of the IOM Roundtable on Translating Genomic-Based Research for Health. She is on the editorial boards of several journals. She was instrumental in the passage of the Genetic Information Nondiscrimination Act. She received an honorary doctorate in 2005 from Iona College for her work in community engagement, the first Patient Service Award from the University of North Carolina Institute for Pharmacogenomics and Individualized Therapy in 2007, the Research!America Distinguished Organization Advocacy Award in 2009, and the Clinical

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×

Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy in 2011. She is an Ashoka Fellow.

Jason Vassy, M.D., M.P.H., is a primary care physician and clinician–investigator at Harvard Medical School, the Veterans Affairs Boston Healthcare System, and Brigham and Women’s Hospital. His research examines the clinical translation of genomic medicine to primary care settings, with a focus on how primary care physicians will use genomic technology in their medical decision making. He is also a co-investigator on the MedSeq Project, the first randomized trial of whole-genome sequencing in primary care. In this study, one of the National Institutes of Health Clinical Sequencing Exploratory Research (CSER) projects, Dr. Vassy is observing how primary care physicians receive and interpret the sequencing results of their generally healthy patients and how they discuss the results with their patients. This work will inform how health systems can support and optimize physician use of genomic medicine.

Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 73
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 74
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 75
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 76
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 77
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 78
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 79
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 80
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 81
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 82
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 83
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 84
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 85
Suggested Citation:"Appendix B: Speaker Biographical Sketches." Institute of Medicine. 2015. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21707.
×
Page 86
Next: Appendix C: Statement of Task »
Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary Get This Book
×
Buy Paperback | $38.00 Buy Ebook | $30.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

The inclusion of genomic data in a knowledge-generating health care system infrastructure is one promising way to harness the full potential of that information to provide better patient care. In such a system, clinical practice and research influence each other with the goal of improving the efficiency and effectiveness of disease prevention, diagnosis, and treatment. To examine pragmatic approaches to incorporating genomics in learning health care systems, the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health hosted a workshop which convened a variety of stakeholder groups, including commercial developers, health information technology professionals, clinical providers, academic researchers, patient groups, and government and health system representatives, to present their perspectives and participate in discussions on maximizing the value that can be obtained from genomic information. The workshop examined how a variety of systems are capturing and making use of genomic data to generate knowledge for advancing health care in the 21st century. It also sought to evaluate the challenges, opportunities, and best practices for capturing or using genomic information in knowledge-generating health care systems. Genomics-Enabled Learning Health Care Systems summarizes the presentations and discussion of the workshop.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!