Appendix B
Biographical Sketches of Workshop Speakers and Planning Committee Members1
Linda Aldoory, Ph.D., is Endowed Chair and Director of the Herschel S. Horowitz Center for Health Literacy and associate professor in behavioral and community health at the School of Public Health, University of Maryland, College Park. The center was created to advance the science of health literacy and to evaluate communication tools and messages used by government, media, and health care settings. Dr. Aldoory’s research focuses on the role of health communication in improving health literacy. She is part of the recent Health Enterprise Zone grant awarded to Prince George’s County, Maryland, and she received a grant from Atlantic General Hospital to develop a health literacy curriculum for Worcester County Public Schools in Maryland. Through her research, she has faced informed consent challenges with study participants who do not speak English, who have limited formal education, and who have low health literacy. Dr. Aldoory has designed culturally competent and simple messages to use during informed consent procedures. She has also completed several interview-based studies and has used expert panels for government reports. Her research is published in the top journals in her field, such as the Journal of Health Communication and Health Communication. Dr. Aldoory has worked in health communication for more than 20 years, specializing in campaigns and media messages for women of color and adolescents. She has consulted for the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the U.S. Department of Agriculture regarding health media and campaigns in food safety,
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1 Names appear in alphabetical order.
injury prevention, and teen health. Before joining the School of Public Health in 2011, Dr. Aldoory was associate professor in communication at the University of Maryland for 13 years. She also formerly worked for the Bronx Perinatal Consortium, a maternal child health organization in the Bronx, New York, and for the American Psychiatric Association in Washington, DC, in public affairs.
Alicia Fernandez, M.D., is a professor of clinical medicine at the University of California, San Francisco, and an attending physician in the General Medical Clinic and the medical wards at San Francisco General Hospital. Her research primarily focuses on health and health care disparities, and she is particularly interested in vulnerable populations, Latino health, immigrant health, and language barriers. In addition to her research and clinical practice at San Francisco General Hospital, she does a great deal of mentoring for students, residents, fellows, and faculty. She has received several honors and awards, including the Arnold P. Gold Professorship for Humanism in Medicine. She has served as an adviser to the Robert Wood Johnson Foundation, The California Endowment, the National Quality Forum, the Commonwealth Fund, the American Medical Association, the American Board of Internal Medicine, and other organizations on projects focused on health care disparities, Latino health, and limited English proficiency populations. She was a standing member of the Agency for Healthcare Research and Quality’s (AHRQ’s) Health Care Quality and Effectiveness study section (2006–2010) and is currently a member of National Institutes of Health’s (NIH’s) Health Services Organization and Delivery study section.
Sara Goldkind, M.D., M.A., is a bioethics consultant in research and clinical settings. Recently she left the FDA, where she served as the senior bioethicist for more than 10 years. In that position, she addressed ethical issues arising in cutting-edge research, such as informed consent processes; rare diseases; pregnant women; children; consent-impaired individuals; and emergency care. In addition, she is an active member of the Walter Reed National Military Medical Center’s clinical ethics committee. Dr. Goldkind is a board-certified internist, having completed her internship and residency at Boston City Hospital and her M.D. from the University of Maryland School of Medicine. She was on the faculty at the University of South Florida School of Medicine, Department of Internal Medicine. She obtained an M.A. in religious studies with a concentration in comparative religious ethics and completed a fellowship in clinical ethics from the University of South Florida.
Lori Hall, R.N., is a health education consultant with Eli Lilly and Company and has nearly 30 years of health care experience, including direct
patient care and work in the diagnostics and pharmaceutical industries. Throughout her career, her focus has been in the areas of training and leadership development, adult learning, and coaching.
Lilly’s Health Education Department develops and delivers nonbranded, nonpromotional, patient-focused education materials aligned with health literacy principles in the areas where Lilly has presence and expertise. Ms. Hall played an integral role in Lilly’s entry in the Eleventh Annual Institute for Healthcare Advancement Health Literacy Awards, “Feel Your Best: Patient Education Brochures,” which was selected as the winner in the Published Materials category, thus giving national recognition to the company’s commitment to health literacy principles.
Ms. Hall is also spearheading an effort to raise corporate awareness on how better health communications help to improve patient adherence and, therefore, achieve better health outcomes. Through her work with a grass-roots initiative of Lilly advocates from other major patient “touch points,” health literacy pilot programs are being conducted in the areas of clinical trial management and informed consent, medical call centers, medical education grants, global patient safety, and consumer marketing. Each of these pilot programs aligns with the overall vision to help engage, educate, and empower patients to be more active in their own health care. Ms. Hall has a bachelor of science degree in nursing from Purdue University.
Laurie Myers, M.B.A., leads the health literacy strategy for Merck in the United States. In this role, she focuses on the integration of health literacy across the organization, including patient labeling, data transparency for clinical trials, and patient education. She represents Merck as part of the Walgreens/Northwestern/Alliance of Chicago partnership, measuring the impact of the Universal Medication Schedule on patient adherence and health. In May 2011, she led a breakout session at the Institute for Healthcare Advancement’s Health Literacy conference regarding integrating health literacy into a large organization. Ms. Myers joined Merck in 1999 after receiving her M.B.A. in health care management from the Wharton School at the University of Pennsylvania and her B.A. in psychology from Yale University.
Michael Paasche-Orlow, M.D., M.A., M.P.H., is associate professor of medicine, Boston University School of Medicine. Dr. Paasche-Orlow is a general internist and a nationally recognized expert in the field of health literacy. Dr. Paasche-Orlow is currently a coinvestigator with five funded grants that examine health literacy, including two intervention studies evaluating simplified information technologies for behavior change among minority patients with a range of health literacy levels. Dr. Paasche-Orlow’s work has brought attention to the role that health literacy plays in racial
and ethnic disparities, self-care for patients with chronic diseases, end-of life decision making, and the ethics of research with human subjects. Dr. Paasche-Orlow is the associate program director for the Boston University School of Medicine’s General Internal Medicine Academic Post-Doctoral Fellowship Program and the associate section chief for research for the Section of General Internal Medicine in the Boston University School of Medicine’s Department of Medicine.
Kim Parson joined Humana’s Innovation Center in 2006 as part of the team that developed SmartSummary and SmartSummaryRx, the health care industry’s first comprehensive and personal consumer-focused health benefits budgeting, planning, and reporting statements. These statements are a tool consumers can use to communicate with doctors and pharmacists about health care services they receive and medications they take. SmartSummary helps consumers understand plan benefits and better manage their costs. Proactive consumer messaging is designed to change consumer behavior and to improve clinical outcomes.
In her current role in the corporate Consumer Experience Center of Excellence, Ms. Parson is part of a collaborative effort to define the desired Humana consumer experience. She explores external partnership opportunities for joint consumer learning and identifies innovative technologies that improve processes, leading to transformed consumer experiences. Her team facilitates business area identification of the current consumer experience utilizing experience design processes based on human-centered design methodology. Ms. Parson designs and leads ideation workshops and futuring sessions using experiential learning to stimulate innovative thinking.
Her previous work to identify the holistic provider experience with Humana led to the identification of the financial impact of health literacy on consumers and payers, prompting Humana to create a team focused on health literacy efforts internally and externally. In her time at Humana, Ms. Parson also led the Provider Interface department, which is responsible for helping providers and Humana reduce administrative costs by increasing provider self-service.
During Ms. Parson’s earlier career as a journalist with the Tribune Company, Knight Ridder, and Gannett, she led staffs at the Orlando Sentinel and the Lexington Herald-Leader that received numerous writing and design awards. A Society of News Design award winner herself, Ms. Parson served as a judge in the society’s 28th international design competition. She earned bachelor’s degrees in journalism and English and has done graduate studies in communications management at Western Kentucky University.
Sandra Crouse Quinn, Ph.D., is the associate dean for academic affairs, professor in the Department of Family Science, and senior associate direc-
tor of the Center for Health Equity at the School of Public Health, University of Maryland, College Park. She is the principal investigator (PI) (with S. Thomas) on a Center of Excellence on Race, Ethnicity and Health Disparities Research, funded by the National Institute for Minority Health and Health Disparities, NIH. Within that center, she is also the PI of a 4-year study, “Uncovering and Addressing Cultural Beliefs Behind Vaccine Racial Disparities.” In addition, Dr. Quinn is currently the PI on a study titled “Investigating Factors Associated with Participation of Racial and Ethnic Minority Populations in FDA Regulated Research,” funded by the FDA through the Maryland Center for Regulatory Science and Innovation.
Until the grant’s completion in 2012, Dr. Quinn was the PI (with S. Thomas) on “Building Trust Between Minorities and Researchers: A Bioethics Research Infrastructure Initiative” (NIH Grand Opportunity grant) funded by the National Institute for Minority Health and Health Disparities and the Office of the Director, NIH. She was the co-PI on a 5-year Research Center of Excellence on Minority Health Disparities funded by the National Institute for Minority Health and Health Disparities, NIH. From 2008 to 2010, she was also the co-PI on a 5-year, CDC-funded Preparedness and Emergency Response Research Center, Public Health Adaptive Systems Studies (PHASYS) project, which focuses on public health systems’ capacities to respond to disasters and emergencies. In the PHASYS Center, her specific focus was on risk communication and vulnerable populations. From 2009 to 2010, Dr. Quinn was the PI on a CDC-funded national study of public attitudes toward H1N1. From 2002 to 2005, she was the PI on a CDC-funded study on communication between postal workers and public health professionals during the 2001 anthrax attack. Finally, she was the site PI on a subcontract for the Mid-Atlantic Public Health Training Center, funded by the U.S. Health Resources and Services Administration (prime grantee: Johns Hopkins Bloomberg School of Public Health).
Her research interests include engagement of minority and marginalized communities in research; vaccine acceptance, attitudes, and communication; and risk communication in emergencies, disasters, and pandemics with a specific focus on minority populations and disparities. In recent years, Dr. Quinn has served as guest editor for several journals, including a 2013 theme issue on ethical issues on inclusion of minority populations in research in the American Journal of Public Health; a 2008 theme issue on emergency risk communication and pandemic influenza for the journal Health Promotion Practice; and a 2006 theme issue on health disparities in Health Education and Behavior. She has presented internationally on her research in Israel, Japan, the Netherlands, Portugal, South Africa, Thailand, and the United Kingdom. She co-led the development of an interactive educational website, www.buildingtrustumd.org, which focuses
on enabling minorities to become informed decision makers about participation in research.
Dr. Quinn was a 2006–2007 fellow in the Hedwig van Ameringen Executive Leadership in Academic Medicine Program for Women. She was also a Fulbright Senior Specialist at the Universidade de Fortaleza in Brazil in 2010.
Kenneth G. Saag, M.D., is the Jane Knight Lowe Professor of Medicine, Division of Clinical Immunology and Rheumatology, at the University of Alabama at Birmingham (UAB) in Birmingham, Alabama. Dr. Saag’s primary research interests are in the epidemiology of osteoporosis and gout, methods to translate evidence into practice, and the design of large pragmatic trials in rheumatic disease. He is the founding director of AHRQ’s Deep South Center for Education and Research on Therapeutics, established in May 1999. He is also director of the AHRQ-supported UAB T32 in Health Services Research and UAB K12 in Patient-Centered Outcomes Research, the UAB Center of Research Translation in Gout and Hyperuricemia, and codirector of the Multidisciplinary Clinical Research Center. He has received support from the National Institute of Arthritis and Musculoskeletal and Skin Diseases as a K24 recipient, allowing him to mentor more than 35 students, fellows, and junior faculty. He has published more than 220 peer-reviewed manuscripts and has also written more than 100 other materials, including reviews, editorials, books, and book chapters. Recently he published the first edition of the clinical handbook Diagnosis and Management of Osteoporosis.
Dr. Saag is on the American College of Rheumatology (ACR) Board of Directors, has been a leader in the development of the 2008 and 2011 ACR Recommendations on the Treatment of Rheumatoid Arthritis, and is a member of the ACR Council on Healthcare Economics. He received the ACR Rheumatology Research Foundation Excellence in Investigative Mentoring Award in 2013. He also serves as vice president on the Board of Trustees of the National Osteoporosis Foundation, is on the Board of Directors of the Gout and Uric Acid Society, and is a member of the National Committee for Quality Assurance Expert Panel, Osteoporosis Advisory Workgroup.
Yael Schenker, M.D., M.A.S., received her undergraduate degree in literature from Harvard University. She completed all of her medical training at the University of California, San Francisco, before joining the faculty of the University of Pittsburgh in 2010. She is currently an assistant professor in the Division of General Internal Medicine, Section of Palliative Care and Medical Ethics, and holds a secondary appointment in the Clinical and Translational Science Institute. She is also an affiliate faculty member in
the Center for Bioethics and Health Law, a member of the Biobehavioral Oncology Program at the University of Pittsburgh Cancer Center, and an associate faculty member of Clinical Research Modeling of Acute Illness in the Department of Critical Care Medicine. Dr. Schenker’s research focuses on the integration of palliative care services in oncology, surrogate decision making, informed consent, and medical advertising. She has received funding from the National Palliative Care Research Center, the University of Pittsburgh Clinical Research Scholars program, and the National Cancer Institute. Dr. Schenker is also a practicing primary care physician and conducts palliative care consults at the University of Pittsburgh Medical Center.
Rebecca Sudore, M.D., is a geriatrician and a hospice and palliative care physician at the San Francisco VA Medical Center and an associate professor at the University of California, San Francisco. Dr. Sudore is a former K23 and VA Career Development Award recipient and VA–Robert Wood Johnson Physician Faculty Scholar. She has also been awarded a VA IIR and R01 through the NIH and a Patient-Centered Outcomes Research Institute (PCORI) grant to conduct research on improving advance care planning and medical decision making for diverse, vulnerable older adults with limited health literacy. She has designed and tested an informed consent process for patients with limited literacy and an advance directive that is both literacy and culturally appropriate. Her current research program is focused on creating and testing culturally and literacy appropriate tools to help patients engage in advance care planning. She developed a new paradigm of advance care planning that focuses on preparing diverse, older adults to communicate their evolving wishes over time and to make real-time, complex medical decisions over the course of chronic and advanced illness. She recently launched the PREPARE website (www.prepareforyourcare.org), which walks patients and their families through a step-by-step process to prepare for communication and medical decision making. The goal of this work is to better enable patients to engage in the advance care planning process and to make informed medical decisions at the end of life.
Jeremy Sugarman, M.D., M.P.H., M.A., is the Harvey M. Meyerhoff Professor of Bioethics and Medicine, professor of medicine, professor of health policy and management, and deputy director for medicine at the Berman Institute of Bioethics at Johns Hopkins University. He is an internationally recognized leader in the field of biomedical ethics with particular expertise in the application of empirical methods and evidence-based standards for the evaluation and analysis of bioethical issues. His contributions to both medical ethics and policy include his work on the ethics of informed consent, umbilical cord blood banking, stem cell research, international HIV prevention research, global health, and research oversight.
Dr. Sugarman is the author of more than 200 articles, reviews, and book chapters. He has also edited or coedited four books (Beyond Consent: Seeking Justice in Research; Ethics of Research with Human Subjects: Selected Policies and Resources; Ethics in Primary Care; and Methods in Medical Ethics). Dr. Sugarman is a contributing editor for IRB and is on the editorial boards of several academic journals.
Dr. Sugarman consults and speaks internationally on a range of issues related to bioethics. He has served as senior policy and research analyst for the White House Advisory Committee on Human Radiation Experiments, as consultant to the National Bioethics Advisory Commission, and as senior advisor to the Presidential Commission for the Study of Bioethical Issues. He also served on the Maryland Stem Cell Research Commission.
He was the founding director of the Trent Center for Bioethics, Humanities and History of Medicine at Duke University, where he was also a professor of medicine and philosophy. He is a faculty affiliate of the Kennedy Institute of Ethics at Georgetown University and an Academic Icon of the University of Malaya.
Dr. Sugarman currently serves on the Scientific and Research Advisory Board for the Canadian Blood Service, the Ethics and Public Policy Committee of the International Society for Stem Cell Research, and the Board of Directors of PRIM&R (Public Responsibility in Medicine and Research). He is cochair of the Johns Hopkins Institutional Stem Cell Research Oversight Committee. In addition, he is chair of the Ethics Working Group of the HIV Prevention Trials Network and is the ethics officer for the Resuscitation Outcomes Consortium.
Dr. Sugarman has been elected as a member of the American Society of Clinical Investigation, the Association of American Physicians, and the Institute of Medicine. He is a fellow of the American Association for the Advancement of Science, the American College of Physicians, and the Hastings Center.
Christopher Trudeau, J.D., is an associate professor at Thomas M. Cooley Law School. He teaches all forms of legal research, analysis, and writing, but he particularly enjoys teaching legal drafting. Professor Trudeau is a zealous advocate for plain language. He has focused much of his recent research on combating archaic, traditional language in law, health care, government, and business.
He recently published novel empirical research on the public’s preference for plain language—“The Public Speaks: An Empirical Study of Legal Communication”—in volume 14 of The Scribes Journal of Legal Writing (2012). Professor Trudeau received a grant from Lexis/Nexis to conduct this research, the first U.S. study of its kind.
In addition to his research on plain language, Professor Trudeau is active in the Legal Writing Institute, Scribes (the American Society for Writers on Legal Subjects), and Clarity International (an international plain language organization). He has presented at numerous conferences for these organizations, and he has spoken on health literacy for the Institute of Healthcare Advancement, the FDA, and other health care organizations.
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