Health Disparities in the Medical Record and Disability Determinations: Proceedings of a Workshop (2024)

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Health Disparities in the Medical Record and Disability Determinations Austen Applegate, Carol Mason Spicer, and Joe Alper, Rapporteurs Board on Health Care Services Health and Medicine Division PREPUBLICATION COPY—Uncorrected Proofs Proceedings of a Workshop 

NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by a contract (28321323D00060012) between the National Academy of Sciences and the Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/27909 This publication is available 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. Copyright 2024 by the National Academy of Sciences. National Academies of Sciences, Engineering, and Medicine and National Academies Press and the graphical logos for each are all trademarks of the National Academies of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Health disparities in the medical record and disability determinations: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/27909. PREPUBLICATION COPY—Uncorrected Proofs 

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY—Uncorrected Proofs 

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PLANNING COMMITTEE FOR THE WORKSHOP ON HEALTH DISPARITIES IN THE MEDICAL RECORD AND DISABILITY DETERMINATIONS1 AMY HOUTROW (Cochair), Professor and Vice Chair, University of Pittsburgh School of Medicine KARRIE SHOGREN (Cochair), Ross and Marianna Beach Distinguished Professor, University of Kansas KENRICK CATO, Professor of Informatics, Children’s Hospital of Philadelphia KENSAKU KAWAMOTO, Professor of Biomedical Informatics, University of Utah ELHAM MAHMOUDI, Associate Professor of Health Economics, University of Michigan JONATHAN PLATT, Assistant Professor of Epidemiology, University of Iowa AMANDA ALISE PRICE, Director, Office of Health Equity and Chief Scientific Diversity Officer, Eunice Kennedy Shriver National Institute of Child Health and Human Development MICHAEL V. STANTON, Associate Professor, California State University, East Bay RUPA VALDEZ, Professor, University of Virgina RUQAIIJAH YEARBY, Kara J. Trott Professor in Health Law at Moritz College of Law, the Ohio State University Staff CAROL MASON SPICER, Senior Program Officer AUSTEN APPLEGATE, Research Associate CHIDINMA CHUKWURAH, Senior Program Assistant JULIE WILTSHIRE, Senior Finance Business Partner ELISE MIALOU, Senior Finance Business Partner SHARYL NASS, Senior Board Director 1 The planning committee’s role was limited to planning the workshop, and the Proceed- ings of a Workshop has been prepared by the workshop rapporteurs with the assistance from national Academies staff as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants and are not necessarily endorsed or verified by the National Academies of Sciences, Engi- neering, and Medicine, and they should not be construed as reflecting any group consensus. v PREPUBLICATION COPY—Uncorrected Proofs 

vi HEALTH DISPARITIES IN THE MEDICAL RECORD Consultants JOE ALPER, Science Writer vi PREPUBLICATION COPY—Uncorrected Proofs 

BOARD ON HEALTH CARE SERVICES DONALD BERWICK (Chair), President Emeritus and Senior Fellow, Institute for Healthcare Improvement ANDREW BINDMAN, Executive Vice President and Chief Medical Officer, Kaiser Permanente PAUL CHUNG, Professor and Founding Chair, Health Systems Science, Kaiser Permanente Bernard J. Tyson School of Medicine MARTHA DAVIGLUS, Director, Institute for Minority Health Research and Associate Vice Chancellor for Research, University of Illinois at Chicago LEE A. FLEISHER, Emeritus Professor, Anesthesiology and Critical Care, University of Pennsylvania Perelman School of Medicine, and Chief Medical Officer and Director, Center for Standards and Quality, Centers for Medicare & Medicaid Services COLLEEN GALAMBOS, Professor and Helen Bader Endowed Chair, Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee EMILY GEE, Senior Vice President, Inclusive Growth, Center for American Progress GARY L. GOTTLIEB, Professor of Psychiatry, Harvard Medical School ELMER HUERTA, Clinical Professor of Medicine, Division of Hematology and Oncology, The George Washington University Cancer Center LAUREN HUGHES, State Policy Director, Eugene S. Farley Health Policy Center, and Associate Professor of Family Medicine, University of Colorado Anschutz Medical Campus SHARON K. INOUYE, Professor of Medicine, Harvard Medical School, and Milton and Shirley F. Levy Family Chair and Director, Aging Brain Center, Hinda and Arthur Marcus Institute for Aging Research MARK S. JOHNSON, Professor and Chair, Department of Community and Family Medicine, Howard University JOHN LUMPKIN, President, Blue Cross and Blue Shield of North Carolina Foundation FAITH MITCHELL, Institute Fellow, Urban Institute JULIE ROBISON, Professor of Medicine, Center on Aging, University of Connecticut Health vii PREPUBLICATION COPY—Uncorrected Proofs 

viii HEALTH DISPARITIES IN THE MEDICAL RECORD LINDA D. SCOTT, Dean and Professor, University of Wisconsin- Madison School of Nursing HARDEEP SINGH, Chief, Health Policy Quality and Informatics Program, Center for Innovations in Quality Effectiveness and Safety, Michael E. DeBakey VA Medical Center HEMI TEWARSON, Executive Director, National Academy for State and Health Policy KEEGAN D. WARREN, Executive Director, Institute on Healthcare Access, Texas A&M University LAURIE ZEPHYRIN, Senior Vice President, Advancing Health Equity, The Commonwealth Fund MICHAEL ZUBKOFF, Director, MD-MBA Program, Dartmouth; Associate Dean, Geisel School of Medicine, and Faculty Director, Center for Healthcare, Tuck School of Business at Dartmouth viii PREPUBLICATION COPY—Uncorrected Proofs 

Reviewers This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in mak- ing each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: KATHLEEN L. KANE, Kane Law, LLC KENSAKU KAWAMOTO, University of Utah TARA LAGU, Northwestern University Feinberg School of Medicine Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by PAUL VOLBERDING, University of California San Francisco. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully con- sidered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. We also thank staff member LIDA BENINSON for reading and provid- ing helpful comments on this manuscript. ix PREPUBLICATION COPY—Uncorrected Proofs 

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Acknowledgments The National Academies of Sciences, Engineering, and Medicine’s Stand- ing Committee of Medical and Vocational Experts for the Social Security Administration’s Disability Programs wishes to express its sincere gratitude to the planning committee cochairs Amy J. Houtrow and Karrie A. Shogren for their valuable contributions to the development and orchestration of this workshop. The standing committee wishes to thank all the members of the planning committee who collaborated to ensure a workshop complete with information presentations and rich discussions. The standing committee also wishes to thank the speakers, who generously shared their time and expertise with workshop participants. Finally, this project was funded with generous support from the Social Security Administration, which is critical to the suc- cess of the Standing Committee of Medical and Vocational Experts for the Social Security Administration’s Disability Program. xi PREPUBLICATION COPY—Uncorrected Proofs 

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Contents ACRONYMS AND ABBREVIATIONS xix 1 INTRODUCTION 1 2 OVERVIEW, CONCEPTS, AND FRAMING 5 Definition of Disability, 6 Overview of SSA’s Disability Determination ­Process, 8 Basics of Health Disparities, 11 The Purpose and Function of the Medical Record, 14 3 SOCIAL DETERMINANTS OF HEALTH AND THEIR EFFECTS ON CARE 17 Addressing Social Determinants of Health for People with Disabilities, 18 Perspective of a Community Outreach ­Coordinator, 21 Reimagining EHRs to Include the Social Side of Health, 22 An Integrated and Patient-Centered Care Model, 25 Q&A with the Panelists, 26 4 DISPARITIES AND BIAS IN EVALUATIVE TESTING AND RECORDING OF MEDICAL INFORMATION 27 Guiding Principles to Address the Effect of Algorithm Bias on Disparities in Health and Health Care, 28 xiii PREPUBLICATION COPY—Uncorrected Proofs 

xiv CONTENTS Health Inequities Through the Lens of a Person with Disabilities, 32 Data Collection and Identification of Disability Status: Necessary Tools to Improve Care Access and Reduce Health Care Disparities for People with Disabilities, 34 Barriers to Initiate Participation in Interacting with the System, 36 Q&A with the Panelists, 38 5 HEALTH DISPARITIES AND THE DISABILITY APPLICATION PROCESS 41 Using Data to Advance Health Equity for People with Disabilities, 42 A Patient’s Story, 45 People Who Are Unhoused with Diagnoses of Mental Illness, 46 Q&A with the Panelists, 49 6 MODERATED DISCUSSION ON MITIGATING THE EFFECT OF HEALTH DISPARITIES IN THE SSA DISABILITY DETERMINATION PROCESS 51 Helping Clinicians Help Their Patients, 53 Issues with the EHR, 53 Incorporating Patient Voices in Research, 54 7 THE HEALTH RECORD IN DEPTH 57 Current State of Clinical Documentation in the EHR, 58 Biases in EHR Documentation and Its Effect on Clinical Care, 59 Capturing Social Determinants with Health Information Technology, 62 The Importance of Free Text in EHRs and the Role of Artificial Intelligence, 65 Q&A with the Panelists, 66 8 THE RELATIONSHIP BETWEEN THE MEDICAL RECORD AND HEALTH DISPARITIES 69 Disability Status in EHRs, 70 The EHR and What it Does Not Tell Us, 73 Social Drivers of Health in the Medical Record, 74 Standards and Opportunities, 76 Q&A with the Panelists, 79 PREPUBLICATION COPY—Uncorrected Proofs 

CONTENTS xv 9 APPROACHES TO ADVANCING MEDICAL RECORDS TO ADDRESS DISPARITIES IN DISABILITY DETERMINATIONS 81 Capturing Functional Information, 83 Enabling Bidirectional Communication with Community Partners, 83 Providing Evidence-Based, Disability-Friendly Care, 84 Z Codes and Documenting Social Determinants of Health, 85 Identifying Bias, 86 Above All, Ask, 87 Improving the Disability Determination Process, 88 The Role of AI, 89 The Importance of Trust, 89 10 CONCLUDING REMARKS 91 APPENDIXES A References 95 B Statement of Task 103 C Workshop Agenda 105 D Biographical Sketches of Planning Committee Members and Speakers 109 PREPUBLICATION COPY—Uncorrected Proofs 

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Boxes and Figures BOXES 1-1 Statement of Task, 2 2-1 Definition of Terms Relevant to Determining Impairment Severity, 9 2-2 Listings of Impairments, 10 2-3 Key Health Disparities Concepts and Terms, 12 3-1 Health Disparity, Health Care Disparity, Health Inequality, and Health Inequity, 19 FIGURES 2-1 A thought bubble with words people might associate with disability, 6 2-2 The International Classification of Functioning, Disability, and Health, 7 2-3 The health equity process, 13 2-4 The most commonly used EHR vendor systems, 14 3-1 The inverse relationship between the most used behavioral health services and cost, 24 4-1 Guiding principles and the algorithm life cycle, 30 4-2 Standard data HHS collects on disability, 36 5-1 People with disabilities face health disparities, 42 xvii PREPUBLICATION COPY—Uncorrected Proofs 

xviii BOXES AND FIGURES 5-2 Disability inequities, 43 5-3 Intersectional disability inequities, 43 7-1 Digital inclusion plays a role in many social determinants of health, 62 7-2 The incongruence of patient-reported data and EHR data on social determinants of health, 64 8-1 Disability status questions, 71 8-2 Stigmatizing language and disability bias in clinical notes, 72 PREPUBLICATION COPY—Uncorrected Proofs 

Acronyms and Abbreviations ADA Americans with Disabilities Act of 1990 AI artificial intelligence BRIDGE Broadening the Reach, Impact, and Delivery of Genetic Services trial CDC Centers for Disease Control and Prevention DDS Disability Determination Services FQHC federally qualified health center HHS Department of Health and Human Services ICD International Classification of Diseases IT information technology NIH National Institutes of Health NLP natural language processing SSA Social Security Administration SDOH social determinants of health SGA substantial gainful activity xix PREPUBLICATION COPY—Uncorrected Proofs 

xx ACRONYMS AND ABBREVIATIONS SSDI Social Security Disability Insurance SSI Supplemental Security Income PREPUBLICATION COPY—Uncorrected Proofs