National Academies Press: OpenBook
Suggested Citation:"Front Matter." Institute of Medicine. 2015. Improving Genetics Education in Graduate and Continuing Health Professional Education: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/18992.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Adam C. Berger, Samuel G. Johnson, Sarah H. Beachy, and Steve Olson, Rapporteurs Roundtable on Translating Genomic-Based Research for Health Board on Health Sciences Policy

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Acade- my of Engineering, and the Institute of Medicine. This project was supported by contracts between the National Academy of Sciences and the American Academy of Nursing (unnumbered contract); American College of Medical Genetics and Genomics (unnumbered contract); American Heart Association (unnum- bered contract); American Medical Association (unnumbered contract); American Socie- ty of Human Genetics (unnumbered contract); Association for Molecular Pathology (unnumbered contract); Blue Cross and Blue Shield Association (unnumbered contract); College of American Pathologists (unnumbered contract); Department of Veterans Affairs (Contract No. VA248-P-1528 and Contract No. VA240-14-C-0037); Eli Lilly and Compa- ny (unnumbered contract); Genetic Alliance (unnumbered contract); Health Resources and Services Administration (Contract No. HHSH250200976014I, Order Nos. HHSH25034017T and HHSH25034021T); International Society for Cardiovascular Trans- lational Research (unnumbered contract); Kaiser Permanente Program Offices Community Benefit II at the East Bay Community Foundation (Contract No. 20121257); Life Tech- nologies (unnumbered contract); Merck & Co., Inc. (Contract No. CMO-140505- 000393); National Cancer Institute (Contract No. HHSN263201200074I, TO#5); Na- tional Human Genome Research Institute (Contract No. HHSN263201200074I, TO#5); National Institute of Mental Health (Contract No. HHSN263201200074I, TO#5); National Institute of Nursing Research (Contract No. HHSN263201200074I, TO#5); National Institute on Aging (Contract No. HHSN263201200074I, TO#5); Na- tional Society of Genetic Counselors (unnumbered contract); Northrop Grumman Health IT (unnumbered contract); Pfizer Inc. (unnumbered contract); and PhRMA (un- numbered contract). The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13: 978-0-309-31605-7 International Standard Book Number-10: 0-309-31605-7 Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624- 6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2015 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: IOM (Institute of Medicine). 2015. Improving genetics education in graduate and continuing health professional education: Workshop summary. Washing- ton, DC: The National Academies Press.

The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the re- sponsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Victor J. Dzau is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the Nation- al Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

PLANNING COMMITTEE1 BRUCE BLUMBERG (Co-Chair), Institutional Director of Graduate Medical Education, Northern California, Kaiser Permanente, The Permanente Medical Group JOAN A. SCOTT (Co-Chair), Chief, Genetics Services Branch, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration DAVID A. DAVIS, Senior Director, Continuing Education and Perfor- mance Improvement, Association of American Medical Colleges MICHAEL J. DOUGHERTY, Director of Education, American Socie- ty of Human Genetics W. GREGORY FEERO, Contributing Editor, Journal of the American Medical Association KATHERINE JOHANSEN TABER, Director, Personalized Medicine; Assistant Secretary, Council on Science and Public Health, Ameri- can Medical Association JANET K. WILLIAMS, Representative of the American Academy of Nursing; Professor of Nursing, Chair of the Behavioral and Social Science Research Institutional Review Board, University of Iowa Fellow SAMUEL G. JOHNSON, American Association of Colleges of Phar- macy, American College of Clinical Pharmacy Anniversary Fellow IOM Staff ADAM C. BERGER, Project Director SARAH H. BEACHY, Associate Program Officer MEREDITH HACKMANN, Senior Program Assistant 1 Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

ROUNDTABLE ON TRANSLATING GENOMIC-BASED RESEARCH FOR HEALTH1 GEOFFREY GINSBURG (Co-Chair), Director, Center for Genomic Medicine, Institute for Genomic Sciences and Policy, Duke University, Durham, NC SHARON TERRY (Co-Chair), President and Chief Executive Officer, Genetic Alliance, Washington, DC NAOMI ARONSON, Executive Director, Technology Evaluation Center, Blue Cross and Blue Shield Association, Chicago, IL EUAN ANGUS ASHLEY, Representative of the American Heart Asso- ciation; Director, Center for Inherited Cardiovascular Disease, Stanford University School of Medicine, Palo Alto, CA PAUL R. BILLINGS, former Chief Medical Officer, Life Technologies, Carlsbad, CA BRUCE BLUMBERG, Institutional Director of Graduate Medical Education, Northern California Kaiser Permanente, The Permanente Medical Group, Oakland, CA PAMELA BRADLEY, Staff Fellow, Personalized Medicine Staff, Office of In Vitro Diagnostics and Radiological Health, Center for Devices and Radiological Health, U.S. Food and Drug Administration, Silver Spring, MD (until October 2014) PHILIP J. BROOKS, Health Scientist Administrator, Office of Rare Diseases Research, National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD ANN CASHION, Scientific Director, National Institute of Nursing Research, National Institutes of Health, Bethesda, MD C. THOMAS CASKEY, Professor, Baylor College of Medicine, Houston, TX (until June 2014) ROBERT B. DARNELL, President and Scientific Director, New York Genome Center; Investigator, Howard Hughes Medical Institute, Heilbrunn Cancer Professor and Senior Physician, Head, Laboratory of Molecular Neuro-Oncology, Rockefeller University, New York, NY MICHAEL J. DOUGHERTY, Director of Education, American Society of Human Genetics, Bethesda, MD 1 Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

VICTOR J. DZAU, President and Chief Executive Officer, Duke University Health System; Chancellor for Health Affairs, Duke University, Durham, NC (until June 2014) W. GREGORY FEERO, Contributing Editor, Journal of the American Medical Association, Chicago, IL ANDREW N. FREEDMAN, Branch Chief, Clinical and Translational Epidemiology Branch, Epidemiology and Genetics Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Rockville, MD JENNIFER L. HALL, Representative of the International Society for Cardiovascular Translational Research; Associate Professor of Medicine, University of Minnesota, Minneapolis RICHARD J. HODES, Director, National Institute on Aging, Bethesda, MD MUIN KHOURY, Director, National Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GA GABRIELA LAVEZZARI, Assistant Vice President, Scientific Af- fairs, PhRMA, Washington, DC THOMAS LEHNER, Director, Office of Genomics Research Coordination, National Institute of Mental Health, Bethesda, MD DEBRA LEONARD, Representative of the College of American Pathologists; Professor and Chair of Pathology at the University of Vermont College of Medicine; Physician Leader of Pathology and Laboratory Medicine at Fletcher Allen Health Care, University of Vermont College of Medicine, University of Vermont, Burlington TERI A. MANOLIO, Director, Division of Genomic Medicine, Nation- al Human Genome Research Institute, Rockville, MD OLUFUNMILAYO F. OLOPADE, Walter L. Palmer Distinguished Service Professor of Medicine; Director, Center for Clinical Cancer Genetics; Associate Dean for Global Health, University of Chicago, IL (until April 2014) MICHELLE A. PENNY, Senior Director, Translational Medicine Group, Eli Lilly and Company, Indianapolis, IN AIDAN POWER, Vice President and Head, PharmaTx Precision Medicine, Pfizer Inc., Groton, CT (until July 2014) VICTORIA M. PRATT, Representative of the Association for Molecular Pathology; Associate Professor of Clinical Medical and Molecular Genetics and Director, Pharmacogenomics Diagnostic Laboratory, Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis viii

RONALD PRZYGODZKI, Associate Director for Genomic Medicine and Acting Director of Biomedical Laboratory Research and Development, Department of Veterans Affairs, Washington, DC ALLEN D. ROSES, President and Chief Operating Officer, Cabernet, Shiraz and Zinfandel Pharmaceuticals; and Jefferson–Pilot Professor of Neurobiology and Genetics, Professor of Medicine (Neurology); Director, Deane Drug Discovery Institute; Senior Scholar, Fuqua School of Business, R. David Thomas Executive Training Center, Duke University, Durham, NC (until May 2014) JOAN A. SCOTT, Chief, Genetic Services Branch, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Rockville, MD SAM SHEKAR, Chief Medical Officer, Health Information Technology Program, Northrop Grumman Information Systems, McLean, VA KATHERINE JOHANSEN TABER, Director, Personalized Medicine; Assistant Secretary, Council on Science and Public Health, American Medical Association, Chicago, IL DAVID VEENSTRA, Professor, Pharmaceutical Outcomes Research and Policy Program, Department of Pharmacy, University of Washington, Seattle MICHAEL S. WATSON, Executive Director, American College of Medical Genetics and Genomics, Bethesda, MD DANIEL WATTENDORF, Deputy Chief, Medical Innovations, De- partment of the Air Force; Program Manager, Defense Advanced Research Projects Agency/Defense Sciences Office, Arlington, VA CATHERINE A. WICKLUND, Past President, National Society of Genetic Counselors; Director, Graduate Program in Genetic Counseling; Associate Professor, Department of Obstetrics and Gynecology, Northwestern University, Chicago, IL JANET K. WILLIAMS, Representative of the American Academy of Nursing; Professor of Nursing, Chair of the Behavioral and Social Science Research Institutional Review Board, University of Iowa, Iowa City Fellow SAMUEL G. JOHNSON, American Association of Colleges of Phar- macy, American College of Clinical Pharmacy Anniversary Fellow ix

IOM Staff ADAM C. BERGER, Project Director SARAH H. BEACHY, Associate Program Officer MEREDITH HACKMANN, Senior Program Assistant ANDREW M. POPE, Director, Board on Health Sciences Policy x

Reviewers This workshop summary has been reviewed in draft form by individ- uals chosen for their diverse perspectives and technical expertise, in ac- cordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to en- sure that the workshop summary meets institutional standards for objec- tivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integri- ty of the process. We wish to thank the following individuals for their review of this workshop summary: Alexander Djuricich, Indiana University School of Medicine Jean Jenkins, National Human Genome Research Institute Lucinda Maine, American Association of Colleges of Pharmacy Michael Rackover, Philadelphia University Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Melvin Worth. Appointed by the Institute of Medicine, he was responsible for making certain that an independent ex- amination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop sum- mary rests entirely with the rapporteurs and the institution. xi

Acknowledgments The support of the sponsors of the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health was crucial to the planning and conduct of the workshop Assessing Genomic Sequencing Information for Health Care Decision Making and for the development of the workshop summary report. Federal sponsors are the Department of Veterans Affairs; Health Resources and Services Administration; Na- tional Cancer Institute; National Human Genome Research Institute; National Institute of Mental Health; National Institute of Nursing Re- search; and National Institute on Aging. Nonfederal sponsorship was provided by the American Academy of Nursing; American College of Medical Genetics and Genomics; American Heart Association; American Medical Association; American Society of Human Genetics; Association for Molecular Pathology; Blue Cross and Blue Shield Association; Col- lege of American Pathologists; Eli Lilly and Company; Genetic Alliance; International Society for Cardiovascular Translational Research; Kaiser Permanente Program Offices Community Benefit II at the East Bay Community Foundation; Life Technologies; Merck & Co., Inc.; National Society of Genetic Counselors; Northrop Grumman Health IT; Pfizer Inc.; and PhRMA. The Roundtable wishes to express its gratitude to the expert speakers whose presentations examined the context for the challenges involved in educating health care providers in genetics, reviewed promising ap- proaches for providing genetics education, and identified opportunities and next steps for improving genetics education for health professionals. The Roundtable also wishes to thank the members of the planning com- mittee for their work in developing an excellent workshop agenda. The xiii

xiv ACKNOWLEDGMENTS project director would like to thank project staff who worked diligently to develop both the workshop and the resulting summary.

Contents ABBREVIATIONS AND ACRONYMS xix 1 INTRODUCTION AND THEMES OF THE WORKSHOP 1 What Is the Case for Genetics Education?, 3 What Changes Are Needed, and How Can They Be Made?, 4 Organization of the Report, 5 2 MYTHS AND MISTAKES IN GRADUATE AND CONTINUING MEDICAL EDUCATION 7 Education Myths, 7 The Clinical Care Gap, 8 Continuing Medical Education and the Clinical Care Gap, 9 Lessons Learned, 10 3 EDUCATIONAL APPROACHES 13 Just-In-Time Approaches to Education, 14 Technology in Medical Education, 16 Interprofessional Education in Genetics, 18 Identifying and Avoiding Conflicts of Interest in Educational Materials, 21 Principles of Evidence in Designing Educational Programs, 24 Measuring the Effectiveness of Educational Interventions, 27 Reaching Community Practitioners, 28 Motivating Clinicians, 30 Education and Quality Improvement, 31 xv

xvi CONTENTS 4 GRADUATE HEALTH PROFESSIONAL EDUCATION AND POST-GRADUATE TRAINING 33 How Accreditation Processes Could Be Used to Push Genetics and Genomics Learning, 34 A View from the Pharmacy on Improving Genetics Education, 36 Driving Physician Learning Through the Board Certification Exams, 38 A View from the Learner’s Seat, 40 Disseminating Genetics and Genomics Education Into Practice, 42 5 CONTINUING MEDICAL EDUCATION 45 Major Features of Continuing Medical Education, 46 Evidence-Based Continuing Medical Education, 49 Developing Competencies Through Continuing Medical Education, 51 Professional Societies in Genetics Education, 52 6 NEXT STEPS TO ACHIEVE EFFECTIVE GENETICS EDUCATION FOR HEALTH PROFESSIONALS 57 What Changes Need to Be Made?, 57 How Can Those Changes Be Made?, 59 Concluding Remarks, 65 REFERENCES 67 APPENDIXES A Workshop Agenda 73 B Speaker Biographical Sketches 81 C Statement of Task 95 D Registered Attendees 97

Boxes 1-1 Workshop Objectives, 2 1-2 A Case Study Presented by Workshop Co-Chair Bruce Blumberg, 3 5-1 Perspectives on Genetics Education, 47 6-1 What Changes Need to Be Made?, 58 6-2 How Can Those Changes Be Made?, 59 xvii

Abbreviations and Acronyms AAFP American Academy of Family Physicians AAMC Association of American Medical Colleges ABIM American Board of Internal Medicine ACCME Accreditation Council for Continuing Medical Education ACGME Accreditation Council for Graduate Medical Education ASHP American Society of Health Systems Pharmacists EPA entrustable professional activity FDA U.S. Food and Drug Administration G2C2 Genetics/Genomics Competency Center for Education IOM Institute of Medicine IPE interprofessional education ISCC Inter-Society Coordinating Committee for Practitioner Education in Genomics METRIC Measuring, Evaluating, and Translating Research Into Care MOC maintenance of certification RCT randomized clinical trial xix

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Many health care providers do not have either the knowledge or the tools they need in order to apply genetic information in their day-to-day practices. This lack of support is contributing to a substantial delay in the translation of genetic research findings, when appropriate, into improvement in patient outcomes within the health care system. Although the need to improve genetics knowledge among health care providers is clear, the best approaches to educating health care providers in a way that produces meaningful changes in clinical practice are not, especially given the competing coursework and training needs that exist in today's increasingly complex health care settings.

To examine the potential and the challenges of providing genetics education, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine hosted a workshop on August 18, 2014. The workshop examined a variety of approaches that could improve the teaching of genetics in the graduate and continuing education of health professionals; these approaches included online and interactive instruction, just-in-time approaches, the development of clinical decision-support tools, and the incorporation of genetics requirements into licensing and accreditation. This report summarizes the presentations and discussion of the event.

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