Health Disparities in the Medical Record and Disability Determinations: Proceedings of a Workshop (2024)
Chapter: Front Matter
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
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: 978-0-309-72444-9
International Standard Book Number-10: 0-309-72444-9
Digital Object Identifier: https://doi.org/10.17226/27909
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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.
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PLANNING COMMITTEE FOR THE WORKSHOP ON HEALTH DISPARITIES IN THE MEDICAL RECORD AND DISABILITY DETERMINATIONS1
AMY J. HOUTROW (Cochair), Professor and Vice Chair, University of Pittsburgh School of Medicine
KARRIE A. 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
___________________
1 The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop has been prepared by the workshop rapporteurs with assistance from the 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, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.
ELISE MIALOU, Senior Finance Business Partner
SHARYL NASS, Senior Board Director
Consultant
JOE ALPER, Science Writer
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
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 for 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 Health Care, Tuck School of Business at Dartmouth
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 making 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 comments 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 considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
We also thank staff member LIDA BENINSON for reading and providing helpful comments on this manuscript.
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Acknowledgments
The National Academies of Sciences, Engineering, and Medicine’s Standing 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 success of the Standing Committee of Medical and Vocational Experts for the Social Security Administration’s Disability Programs.
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Contents
2 OVERVIEW, CONCEPTS, AND FRAMING
Overview of SSA’s Disability Determination Process
The Purpose and Function of the Medical Record
3 SOCIAL DETERMINANTS OF HEALTH AND THEIR EFFECTS ON CARE
Addressing Social Determinants of Health for People with Disabilities
Perspective of a Community Outreach Coordinator
Reimagining EHRs to Include the Social Side of Health
An Integrated and Patient-Centered Care Model
4 DISPARITIES AND BIAS IN EVALUATIVE TESTING AND RECORDING OF MEDICAL INFORMATION
Guiding Principles to Address the Effect of Algorithm Bias on Disparities in Health and Health Care
Health Inequities Through the Lens of a Person with Disabilities
Barriers to Initiate Participation in Interacting with the System
5 HEALTH DISPARITIES AND THE DISABILITY APPLICATION PROCESS
Using Data to Advance Health Equity for People with Disabilities
People Who Are Unhoused with Diagnoses of Mental Illness
6 MITIGATING THE EFFECT OF HEALTH DISPARITIES IN THE SSA DISABILITY DETERMINATION PROCESS
Helping Clinicians Help Their Patients
Incorporating Patient Voices in Research
Current State of Clinical Documentation in the EHR
Biases in EHR Documentation and Its Effect on Clinical Care
Capturing Social Determinants with Health Information Technology
The Importance of Free Text in EHRs and the Role of Artificial Intelligence
8 THE RELATIONSHIP BETWEEN THE MEDICAL RECORD AND HEALTH DISPARITIES
The EHR and What It Does Not Tell Us
9 APPROACHES TO ADVANCING MEDICAL RECORDS TO ADDRESS DISPARITIES IN DISABILITY DETERMINATIONS
Capturing Functional Information
Enabling Bidirectional Communication with Community Partners
Providing Evidence-Based, Disability-Friendly Care
Z Codes and Documenting Social Determinants of Health
Improving the Disability Determination Process
D Biographical Sketches of Planning Committee Members and Speakers
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Boxes and Figures
BOXES
2-1 Definition of Terms Relevant to Determining Impairment Severity
2-3 Key Health Disparities Concepts and Terms
3-1 Health Disparity, Health Care Disparity, Health Inequality, and Health Inequity
FIGURES
2-1 A thought bubble with words people might associate with disability
2-2 The International Classification of Functioning, Disability and Health model of disability
2-4 The most commonly used EHR vendor systems
3-1 The inverse relationship between the most used behavioral health services and cost
5-1 People with disabilities face health disparities
5-3 Intersectional disability inequities
7-1 Digital inclusion plays a role in many social determinants of health
7-2 The incongruence of patient-reported data and EHR data on social determinants of health
8-1 Disability status questions
8-2 Stigmatizing language and disability bias in clinical notes
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 |
| EHR | electronic health record |
| 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 |
| SDOH | social determinants of health |
| SGA | substantial gainful activity |
| SSA | Social Security Administration |
| SSDI | Social Security Disability Insurance |
| SSI | Supplemental Security Income |
