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Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop (2016)

Chapter: Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors

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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Appendix B

Biographical Sketches of Workshop Speakers, Moderators, and Reactors

Marin P. Allen, Ph.D., is the deputy associate director for communications and public liaison and the director of the Public Information Office in the Office of Communications and Public Liaison (OCPL) in the office of the director of the National Institutes of Health (NIH). OCPL is responsible for all phases of internal and external strategic communication. The Public Information Office is a focal point for health and science writing, health literacy, clear communication, plain language, cultural competency, and language access initiatives. It is also responsible for NIH programs and resources for the public including regular publications in print and on the Web: The NIH Record, NIH: News in Health, and Research Matters! The Public Information Office also manages the NIH visitors center and the NIH Nobel Laureate Hall, special events, and grantee public information office relations. Prior to 2004, Dr. Allen was the communications director and public liaison officer for the National Institute on Deafness and Other Communication Disorders (NIDCD) at NIH. She led the NIDCD’s first communications, legislation, and policy office programs. Dr. Allen has 30 years of communications, public health education, outreach, and media relations experience. Before joining NIH, she directed public relations for Gallaudet University (GU) from 1988 to 1990. From 1981 to 1990, she was on the faculty, and during her service there she became a tenured full professor in and the chair of the Department of Television, Film, and Photography in the School of Communication at GU. Prior to working at Gallaudet, Dr. Allen was a media specialist with the White House Conference on Aging. At the beginning of her career, she was a faculty member in communications at the University of Maryland, College Park. Dr. Allen

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

has two Emmy awards for programs she produced that aired for 5 years on the Discovery Channel and PBS. She was elected for two terms to the board of governors of the National Academy of Television Arts and Sciences DC chapter and as an emeritus member of the Board of the Council on International Non-Theatrical Events (CINE). She is a two-time CINE award winner. She has been involved in trans-agency efforts in health literacy, cultural competency, behavioral research communication, women’s health, and health communication. Dr. Allen is the NIH representative to the U.S. Department of Health and Human Services working group on health literacy and has been a repeated contributor to Healthy People efforts for 2000, 2010, and 2020 in communications, health information technology, and health literacy. During her academy experience, Dr. Allen has taught in all areas of public communication and health policy.

Jessica Ancker, M.P.H., Ph.D., received an A.B. degree magna cum laude in history and science from Harvard University, and initially pursued a career in journalism and medical writing and editing. She then earned a master of public health degree from the Department of Biostatistics at Columbia University’s Mailman School of Public Health in 2004. She went on to complete a Ph.D. at the Columbia University College of Physicians and Surgeons in 2009 as a National Library of Medicine/Robert Wood Johnson Foundation Predoctoral Fellow in the Department of Biomedical Informatics. Dr. Ancker joined Weill Cornell Medical College in 2009, and since 2011 she has also held a faculty position in the Weill Cornell Graduate School of Medical Sciences. Dr. Ancker uses both qualitative and quantitative methods in her research. She is a recognized expert in the field of health numeracy and patient decision making. In addition, she conducts health information technology evaluation research, which has been published in leading journals in informatics as well as in general medical journals. She currently holds a K01 grant from the Agency for Healthcare Research and Quality for a 5-year series of studies on patient use of health information technology.

Dr. Ancker is also a committed educator. She co-developed and leads the department’s certificate programs in health information technology and health analytics, and she teaches in its master’s program in health informatics. She has received awards for teaching excellence from both Weill Cornell Medical College and the American Medical Writers Association.

Paul S. Appelbaum, M.D., is the Elizabeth K. Dollard Professor of Psychiatry, Medicine, and Law, and the director of the Division of Psychiatry, Law, and Ethics in the Department of Psychiatry at the College of Physicians and Surgeons of Columbia University; a research psychiatrist at the New York State Psychiatric Institute; and an affiliated faculty member at Columbia

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

Law School. He directs Columbia’s Center for Research on Ethical, Legal, and Social Implications of Psychiatric, Neurologic, and Behavioral Genetics and heads the Clinical Research Ethics Core for Columbia’s Clinical and Translational Science Award program. He is the author of many articles and books on law and ethics in clinical practice and research, including four that were awarded the Manfred S. Guttmacher Award from the American Psychiatric Association and the American Academy of Psychiatry and the Law. Dr. Appelbaum is past president of both the American Psychiatric Association (APA) and the American Academy of Psychiatry and the Law. He has twice served as chair of the APA Council on Psychiatry and Law and of the APA Committee on Judicial Action, and he now chairs the APA’s Diagnostic and Statistical Manual of Mental Disorders Steering Committee. He was a member of the MacArthur Foundation Research Networks on Mental Health and the Law and on Mandatory Outpatient Treatment and is a network scholar for the Network on Neuroscience & Law. Dr. Appelbaum has received the APA’s Isaac Ray Award for “outstanding contributions to forensic psychiatry and the psychiatric aspects of jurisprudence,” was the Fritz Redlich Fellow at the Center for Advanced Study in the Behavioral Sciences, and has been elected to the National Academy of Medicine.

Dr. Appelbaum is a graduate of Columbia College, received his M.D. from Harvard Medical School, and completed his residency in psychiatry at the Massachusetts Mental Health Center/Harvard Medical School in Boston.

Suzanne Bakken, R.N., Ph.D., is the Alumni Professor of Nursing and a professor of biomedical informatics at Columbia University. Following doctoral study in nursing at the University of California, San Francisco, she completed a National Library of Medicine postdoctoral fellowship in medical informatics at Stanford University. The goal of Dr. Bakken’s program of research is to promote health and reduce health disparities in underserved populations through the application of innovative informatics methods. A major focus of her current grant portfolio is the visualization of health care data for community members, patients, clinicians, and community-based organizations. Dr. Bakken currently directs the Center for Evidence-Based Practice in the Underserved and the Reducing Health Disparities Through Informatics pre-doctoral and postdoctoral training program, both funded by the National Institute of Nursing Research. She also served as principal investigator of the Agency for Healthcare Research and Quality–funded Washington Heights Inwood Informatics Infrastructure for Comparative Effectiveness Research (WICER) and its follow-up study, WICER 4 U, which is focused on promoting the use of WICER infrastructure through stakeholder engagement. She has also received funding from the National Cancer Institute, the National Library of Medicine, and the

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

Health Resources and Services Administration. Dr. Bakken has published more than 200 peer-reviewed papers. In 2010 she received the Pathfinder Award from the Friends of the National Institute of Nursing Research. She is an elected fellow of the New York Academy of Medicine, American Academy of Nursing, and American College of Medical Informatics and is a member of the National Academy of Medicine.

Terry Davis, Ph.D., a pioneer in the field of health literacy, is a professor of medicine and pediatrics at Louisiana State University Health Sciences Center in Shreveport. For the past 25 years she has led an interdisciplinary team investigating the impact of patient literacy on health and health care. Seminal achievements include development of the Rapid Estimate of Adult Literacy in Medicine and creation of user-friendly patient education and provider training materials that are being used nationally. Dr. Davis has more than 120 publications related to health literacy and health communication. She has served on health literacy advisory boards for both the American Medical Association and the American College of Physicians (ACP). She was an independent agent on the Institute of Medicine’s Committee on Health Literacy and a developer of the American Medical Association’s Train-the-Trainer Health Literacy Curriculum. Currently she is a member of the Healthy People 2020 Health Literacy/Health Communication Section and serves as a health literacy advisor to the U.S. Food and Drug Administration. Dr. Davis chaired Louisiana’s statewide Health Literacy Task Force, the first legislatively mandated health literacy group in the nation. She received the Louisiana Public Health Association’s Founders Award for Significant Achievement in Public Health Research. As a frequent speaker at national conferences, she has integrated her research findings into practical lessons for providers and policy makers. Dr. Davis is the health literacy principal investigator (PI) on a National Institutes of Health grant for the Louisiana Clinical and Translational Science Center, an unprecedented collaborative effort among eight academic institutions in Louisiana. She is PI on a 5-year National Cancer Institute health literacy intervention to increase regular breast and colorectal cancer (CRC) screening among patients in federally qualified health centers. Building on this work she was recently awarded an American Cancer Society grant to evaluate follow-up strategies to improve regular CRC screening in rural clinics in the state. Dr. Davis is also working with Drs. Mike Wolf and Ruth Parker on Agency for Healthcare Research and Quality–funded studies to improve patient understanding and actual use of prescription medication labels in English and Spanish. Along with a team from the University of North Carolina and the University of California, San Francisco, she has been funded by the ACP to develop and test practical self-management guides and videos for patients with diabetes, chronic obstructive pulmonary disease, coronary

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

artery disease, obesity, and rheumatoid arthritis. The American College of Physicians Foundation has distributed more than 5 million copies of these guides.

Jennifer Dillaha, M.D., is the medical advisor for health literacy and communication at the Arkansas Department of Health. Under her leadership low health literacy has been recognized as an important public health problem in Arkansas, and the health department has made improving health literacy a cross-cutting priority in its strategic plan. In November 2013, Dr. Dillaha became the medical director for immunizations in addition to her role in health literacy. Prior to her current roles, Dr. Dillaha served as the special advisor for strategic initiatives in the Office of the Director from June 2010 to April 2013 and as the director of the Center for Health Advancement from August 2005 to June 2010. Dr. Dillaha is currently the chair of the Partnership for Health Literacy in Arkansas, which is the Health Literacy Section of the Arkansas Public Health Association. She is a physician with specialty training in internal medicine and subspecialty training in infectious diseases and in geriatric medicine. She has faculty appointments as an assistant professor in the University of Arkansas for Medical Sciences College of Public Health, College of Medicine, and Regional Programs.

Carla Easter, Ph.D., is chief of the Education and Community Involvement Branch at the National Human Genome Research Institute (NHGRI). She played a major role in the development of the NHGRI/Smithsonian exhibition Genome: Unlocking Life’s Code and its accompanying website, and she serves as a liaison to the K–12 and university community as a speaker on genomic science and career preparation and pathways. Dr. Easter also has served as an adjunct faculty member at the University of the District of Columbia Department of Biology, Chemistry and Physics. From 2003 to 2006, Dr. Easter was director of outreach for Washington University School of Medicine’s Genome Sequencing Center. Before assuming her role as outreach director, Dr. Easter was a research associate in the Department of Education at Washington University (2001–2003) where she explored the notions of science among secondary students. She served as pre-college coordinator for the National Aeronautics and Space Administration Summer High School Apprenticeship Research Plus Program and project associate for the Quality Education for Minorities Network. From 1997 to 2000, Dr. Easter conducted postdoctoral research at Washington University School of Medicine on the virulence factors associated with Streptococcus pyogenes. Dr. Easter earned her bachelor’s degree in microbiology from the University of California, Los Angeles, and her doctoral in biology with an emphasis on molecular genetics from the University of California, San Diego.

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

William Elwood, Ph.D., joined the Office of Behavioral and Social Sciences Research (OBSSR) at the National Institutes of Health (NIH) in August 2009 as the coordinator for the new NIH Basic Behavioral and Social Science Opportunity Network. He also will coordinate and promote other OBSSR-led initiatives that advance research in the basic behavioral and social sciences. Prior to joining OBSSR, Dr. Elwood worked at the Center for Scientific Review, where he was scientific review officer for the Community-Level Health Promotion study section for 5 years. During that time, Dr. Elwood served on and chaired a variety of trans-NIH committees including the Community-Based Participatory Research Scientific Interest Group, the NIH Diversity Council, and the Staff Training in Extramural Programs Committee. Dr. Elwood received his Ph.D. in human communication from Purdue University. His scientific books and articles have concentrated on the attitudes and beliefs of hard-to-reach populations and the influences that cultural and personal values and community settings have on mental health, health-related behaviors, and participation in civic life. His research was supported by NIH, the Ounce of Prevention Fund, Substance Abuse and Mental Health Services Administration, and World Health Organization/Pan American Health Organization. Prior to joining NIH, Dr. Elwood conducted community-based research throughout the United States and Mexico on substance abuse prevention, drug use epidemiology, substance abuse treatment, evaluations of welfare reform programs and public housing initiatives, and efficacy studies of interventions aimed at sexually transmitted diseases and HIV. During that time, Dr. Elwood also established the Houston Community Drug Epidemiology Workgroup to provide more comprehensive descriptions of established and emerging substance abuse problems in the nation’s fourth-largest city. He also served as associate American editor of AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV.

Lori Erby, ScM, Ph.D., CGC, is the associate program director for the Johns Hopkins University/National Human Genome Research Institute (NHGRI) Genetic Counseling Training Program and an adjunct assistant professor in the Department of Health, Behavior and Society at the Johns Hopkins Bloomberg School of Public Health. Prior to her employment with the NHGRI, she was trained as a genetic counselor and then obtained her Ph.D. in health, behavior, and society at the Bloomberg School. She has been practicing as a genetic counselor for almost 15 years and has been continuously involved in research and training efforts aimed at improving communication practices as genetic and genomic technologies evolve. Using a combination of qualitative and quantitative research methods, her work examines the links between variation in communication and outcomes for patients, with a particular interest in understanding mechanisms to improve

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

communication for populations with limited literacy skills. Her previous work with the Genetic Counseling Video Project explored characteristics of the clinical interaction that pose challenges for patients with limited literacy skills, and she is currently extending that work through a project related to communicating Alzheimer’s disease risks to adults with mild cognitive impairment.

Laurie Francis, R.N., M.P.H., is the senior director of clinic operations and quality at the Oregon Primary Care Association. She has been working in health care for the past 20 years to improve health and well-being in individuals and communities. After working in critical care and beginning a number of prevention-type programs, she realized that the social and economic issues were interfering significantly with the opportunity to achieve high levels of health and well-being at the individual and community level. More than 13 years ago, Ms. Francis founded a community health center (medical, dental, behavioral health, and education, including GED, adult literacy, family literacy, early childhood education) where she has learned much about patient health, staff well-being, organizational vigor, and leadership’s role in helping or hindering these areas. She has delivered numerous talks concerning patient-centeredness, staff engagement, organizational alignment, health literacy, and measurement systems that drive improvement. Ms. Francis has published in the areas of health literacy, outcomes, and self-efficacy. Prior to joining the Oregon Primary Care Association, she directed the Montana Primary Care Association, an organization that supports access to care for all in Montana. Currently, she is part of a group convened by the Institute for Alternative Futures to consider social determinants of health and working actively to incorporate promising practices of these determinants in patient-centered health home planning. Her educational background includes a bachelor’s degree in human biology (Stanford University), a degree in nursing (Montana State University), and a masters’ degree in public health (University of Washington).

Chris Gunter, Ph.D., serves as the director for communications operations at the Children’s Healthcare of Atlanta’s Marcus Autism Center, and as an associate professor in the department of pediatrics at the Emory University School of Medicine.

Dr. Gunter earned her Ph.D. in human genetics at Emory University in 1998, studying fragile X syndrome and the mechanisms of dynamic mutation. She then moved to Case Western Reserve University and completed both postdoctoral work on X chromosome inactivation and an editorial fellowship at the journal Human Molecular Genetics. From 2002 to 2008, Dr. Gunter served as a senior editor for the journal Nature, handling the areas of genetics, genomics, and gene therapy. She then joined the Hudson-

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

Alpha Institute for Biotechnology as the director of research affairs, where her responsibilities included creating an academic environment, providing scientific content for multiple audiences, and establishing a new international conference series in immunogenomics. Currently, she is a frequent lecturer on the editorial process for publishing in scientific journals, the changing landscape of publication, and the importance of outreach and engagement using all media. At the Marcus Autism Center, Dr. Gunter coordinates genetics activities and science communication, working with researchers and the public to publish and translate scientific findings.

Kathleen T. Hickey, Ed.D., F.N.P., A.N.P., FAHA, FAAN, is an assistant professor of nursing at the Columbia University School of Nursing. She also holds a joint appointment in the Division of Cardiology (electrophysiology) as both a family and adult nurse practitioner. Her interdisciplinary research is focused on cardiogenetics, the clinical care and management of those with atrial and ventricular arrhythmia, and the prevention of sudden cardiac death. Her recent grant awards include an R03 from the National Institute of Nursing Research focusing on arrhythmia telehealth monitoring, a Clinical Translational Service Award–funded pilot award focusing on cardiogenetics, and a Columbia University Glenda Garvey Teaching Academy award on remote electronic learning. She was the first recipient of Columbia University School of Nursing’s Outstanding Young Investigator Award in 2007. This summer, Dr. Hickey attended the National Institute of Nursing Research Summer Genetic Institute to gain a deeper understanding of the application of genetics as it relates to her focus in area of cardiac electrophysiology. Her teaching in the classroom and clinical setting have focused on such topics as advanced cardiac physical assessment, basic concepts of arrhythmia management, and the care and management of those with internal cardioverter defibrillators and pacemakers. She has published in numerous peer-reviewed journals.

Joseph D. McInerney, M.A., M.S., has been executive vice president of the American Society of Human Genetics (ASHG) since March 2013. He received his training in genetic counseling at the State University of New York–Stony Brook in the mid 1970s and spent the next 22 years working on genetics education for pre-college and college students and on other programs at the Biological Sciences Curriculum Study (BSCS), in Colorado. He was director of BSCS for the last 14 years of his tenure there. From 2000 to 2010, McInerney was director of the Baltimore-based National Coalition for Health Professional Education in Genetics, where he led the development of educational programs for a broad range of health professionals on a wide variety of topics in genetic medicine. He has published more than 100 papers, reviews, and book chapters in the scientific and science

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

education literature. He is an elected fellow of the American Association for the Advancement of Science (1996) and the recipient of the Award for Excellence in Human Genetics Education from ASHG (2005), the Natalie Weissberger Paul Award for National Achievement from the National Society of Genetic Counselors (2005), and the Art of Advocacy Award from Genetic Alliance (2009).

Laurie Myers, M.B.A., has led health literacy strategy for Merck since 2011, and her role has recently expanded to include both U.S. and global responsibility. She focuses on the integration of health literacy externally and across divisions at Merck. Key projects include patient labeling, packaging, clinical trials, and patient education. She has regularly engaged with payers, integrated health systems, and large medical groups to discuss health literacy. Ms. Myers actively participates on several external projects, including acting as co-chair of the Harvard Multi-Regional Clinical Trials Center Return of Results Group, serving on the European Medicines Agency lay summaries working group, and working with the Walgreens/Northwestern/ Alliance of Chicago partnership, measuring the impact of the Universal Medication Schedule on patient adherence and health. She is passionate about creating health literacy champions outside of the field and hence speaks at conferences focused in other areas, including adherence, patient engagement and advocacy, market research, Drug Information Association, and lay summaries, in both the United States and Europe. Ms. Myers joined Merck in 1999 and has worked in several therapeutic areas in market research, marketing communications, and pharmacy and distribution. She received her M.B.A. in health care management from the Wharton School at the University of Pennsylvania and graduated magna cum laude with her B.A. in psychology from Yale University.

Catina O’Leary, Ph.D., serves as president and chief executive officer of Health Literacy Missouri (HLM). Under her direction, HLM’s service network has expanded to include some of the largest employers in Missouri, including pharmaceutical companies, hospital systems, business coalitions, and community-based organizations. Chosen by the St. Louis Business Journal for professional excellence and dedication to the community, Dr. O’Leary is a member of the 2013 class of “40 Under 40” leaders. She was recently selected to join FOCUS St. Louis’ 39th Leadership St. Louis class. Before her appointment as chief executive officer of HLM, Dr. O’Leary was a faculty member at Washington University School of Medicine in the Department of Psychiatry and the Program on Occupational Therapy. At Washington University, her community-engaged research centered on methods to engage underserved populations in health and social service programs. She focused specifically on women’s health.

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

Dr. O’Leary is the past president and continues to serve on the board of The Bridge, a drop-in shelter that offers daily meals and basic social services to homeless and at-risk St. Louisans. She also serves as vice president for Magdalene Saint Louis, a nonprofit organization that helps women who have survived abuse, prostitution, trafficking, and addiction by providing a community where they can recover and rebuild their lives. Dr. O’Leary earned her B.A. in psychology from the University of Mississippi and her M.S.W. and Ph.D. in social work from the George Warren Brown School of Social Work at Washington University.

Ruth Parker, M.D., is a professor of medicine and public health at the Emory University School of Medicine. She developed one of the first measurement tools to quantify patients’ abilities to read and understand health information—the Test of Functional Health Literacy in Adults (TOFLA). She also co-wrote the definition of health literacy used by Healthy People, the National Institutes of Health, and the Institute of Medicine (IOM) report Health Literacy: A Prescription to End Confusion, and she is the developer of a model of health literacy that is achieving growing recognition in the United States and internationally. Dr. Parker worked to define medication labels as an issue at the intersection of health literacy and patient safety, and she co-wrote the seminal white paper on the topic, which was presented to the IOM at a workshop on standardizing medication labels. This led to pivotal work by the U.S. Pharmacopeia (USP), where Dr. Parker worked on an expert panel to create standards for improved medication labels. This standard has now been published by USP. Dr. Parker also works with the U.S. Food and Drug Administration as a scientific expert special government employee regarding medication labels and with the Nonprescription Drug Advisory Committee as an expert in consumer understanding of medication labels. Dr. Parker is also a strong advocate for health literacy and its importance to health. She has worked tirelessly with professional societies, federal and state agencies, and congressional staff to inform them about health literacy issues and to encourage them to recognize health literacy as a priority issue.

Benjamin Solomon, M.D., an accomplished scientist and medical geneticist, is dual board certified in pediatrics and clinical genetics through the National Human Genome Research Institute. At Inova Translational Medicine Institute, Dr. Solomon leads the Medical Genomics Division—a group of clinicians and researchers that focuses on providing genetic and genomic medical care, discovering new explanations for genetic disorders, and studying the best ways to integrate cutting-edge genomic resources into clinical practice. Previously Dr. Solomon held positions at the National Institutes of Health researching the genetic and genomic causes of both rare

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

and common conditions, especially certain types of congenital anomalies. The author of more than 90 peer-reviewed articles and book chapters, Dr. Solomon serves as an editor on a number of medical journals, has edited several medical textbooks, and is actively involved in genetic/genomic training and education.

Sara Van Driest, M.D., Ph.D., is an assistant professor of pediatrics at the Vanderbilt University School of Medicine. Dr. Van Driest’s research program focuses on the development of tools to use large data sources such as electronic medical records and DNA sequences to predict and improve children’s response to medication (personalized pediatrics).

Catherine Wicklund, M.S., is the director of the Graduate Program in Genetic Counseling at Northwestern University and an associate professor in the Department of Obstetrics and Gynecology. She has more than 20 years of experience in clinical genetic counseling and has provided prenatal and pediatric genetic services. She served on the board of directors of the National Society of Genetic Counselors (NSGC) first as Region V representative, then as secretary, and was president in 2008. Currently she is a member of the Illinois Department of Public Health’s Genetic and Metabolic Diseases Advisory Committee, the Advisory Committee on Hereditable Disorders in Newborns and Children, the American Society of Human Genetics representative on the Scientific Program Committee of the 2016 International Congress of Human Genetics, and the NSGC representative on the Institute of Medicine Roundtable on Translating Genomic Based Research for Health. Ms. Wicklund’s research interests include issues regarding whole-genome/exome sequencing and personalized medicine, psychosocial and counseling issues, and professional issues including workforce and access to and delivery of genetic services. She is a co-investigator on the Electronic Medical Records and Genomics Network, which aims to bring personalized medicine into broader clinical use. She received her master of science degree in genetic counseling from the University of Texas Graduate School of Biomedical Sciences and is a diplomat of the American Board of Genetic Counseling.

Consuelo H. Wilkins, M.D., MSCI, is the executive director of the Meharry–Vanderbilt Alliance, a strategic partnership between Meharry Medical College and the Vanderbilt University Medical Center. Her primary responsibilities include developing and supporting collaborative initiatives in biomedical research, community engagement, and interprofessional learning. She holds faculty appointments as an associate professor of medicine at the Vanderbilt University School of Medicine and Meharry Medical College. Dr. Wilkins is widely recognized for her work in stakeholder

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

engagement. She is principal investigator of a Patient-Centered Outcomes Research Institute award, Improving Patient Engagement and Understanding its Impact on Research through Community Review Boards. As the co-director of the Meharry–Vanderbilt Community Engaged Research Core in the Vanderbilt Institute for Clinical and Translational Science, she brings together academic researchers and community members to improve community health and health care through community-engaged research. Her prior research focused on understanding the complex intersection among cognitive impairment, frailty, and depression. Prior to joining the Vanderbilt faculty in 2012, Dr. Wilkins was an associate professor in the Department of Medicine, Geriatrics Division, with secondary appointments in psychiatry and surgery (public health sciences) at Washington University School of Medicine, St. Louis. She served as the founding director of the Center for Community Health and Partnerships in the Institute for Public Health; the co-director of the Center for Community Engaged Research in the Clinical and Translational Science Awards; and the director of Our Community, Our Health, a collaborative program with Saint Louis University to disseminate culturally relevant health information and facilitate community–academic partnerships to address health disparities.

Michael Wolf, Ph.D., M.A., M.P.H., is a professor of medicine, an associate division chief (internal medicine and geriatrics), and the director of the Health Literacy and Learning Program (HeLP) within the Feinberg School of Medicine, Northwestern University. He also holds appointments in cognitive sciences, communication studies, medical social sciences, psychiatry and behavioral sciences, and surgery. As a health services researcher and cognitive-behavioral scientist, Dr. Wolf has extensively studied cognitive, psychosocial, and health system determinants of health, specifically in the area of health literacy and health communications research. His work has primarily focused on understanding health care complexity. Dr. Wolf has led several large-scale, pragmatic trials to evaluate multifaceted interventions to promote patient engagement in health, targeting chronic disease self-management, medication safety, and adherence.

Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Page 101
Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Page 102
Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 103
Suggested Citation:"Appendix B: Biographical Sketches of Workshop Speakers, Moderators, and Reactors." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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Page 104
Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop Get This Book
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On January 20, 2015, President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address. The PMI, by developing new approaches for detecting, measuring, and analyzing a wide range of biomedical information including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, is intended to enable a new era of medicine in which researchers, providers, and patients work together to develop individualized care. Part of this effort included the creation of a national, large-scale research participant group, or cohort. The PMI Cohort Program is aimed at extending precision medicine to many diseases, including both rare and common diseases such as diabetes, heart disease, Alzheimer’s disease, obesity, and mental illnesses such as depression, bipolar disorder, and schizophrenia, by building a national research cohort of 1 million or more U.S. participants.

An important challenge to assembling the PMI Cohort will be to reach individuals who are socioeconomically disadvantaged. Individuals who are socioeconomically disadvantaged have lower health literacy; often belong to racial, ethnic, and minority communities; and are often less likely to participate in research studies and biorepositories. To explore possible strategies and messaging designs, the Roundtable on Health Literacy formed an ad hoc committee charged with planning and conducting a 1-day public workshop on the intersection of health literacy and precision medicine. The workshop participants discussed a variety of topics including an overview of precision medicine and its potential, the relevance of health literacy to the success of precision medicine efforts, and perspectives and understanding of different groups, such as health care providers, consumers, and insurers. This publication summarizes the presentations and discussions from the workshop.

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