The Science of Health Disparities Research

The Science of Health Disparities Research
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Integrates the various disciplines of the science of health disparities in one comprehensive volume The Science of Health Disparities Research is an indispensable source of up-to-date information on clinical and translational health disparities science. Building upon the advances in health disparities research over the past decade, this authoritative volume informs policies and practices addressing the diseases, disorders, and gaps in health outcomes that are more prevalent in minority populations and socially disadvantaged communities. Contributions by recognized scholars and leaders in the field—featuring contemporary research, conceptual models, and a broad range of scientific perspectives—provide an interdisciplinary approach to reducing inequalities in population health, encouraging community engagement in the research process, and promoting social justice. In-depth chapters help readers better understand the specifics of minority health and health disparities while demonstrating the importance of advancing theory, refining measurement, improving investigative methods, and diversifying scientific research. In 26 chapters, the book examines topics including the etiology of health disparities research, the determinants of population health, research ethics, and research in African American, Asians, Latino, American Indian, and other vulnerable populations. Providing a unified framework on the principles and applications of the science of health disparities research, this important volume: Defines the field of health disparities science and suggests new directions in scholarship and research Explains basic definitions, principles, and concepts for identifying, understanding and addressing health disparities Provides guidance on both conducting health disparities research and translating the results Examines how social, historical and contemporary injustices may influence the health of racial and ethnic minorities Illustrates the increasing national and global importance of addressing health disparities Discusses population health training, capacity-building, and the transdisciplinary tools needed to advance health equity A significant contribution to the field, The Science of Health Disparities Research is an essential resource for students and basic and clinical researchers in genetics, population genetics, and public health, health care policymakers, and epidemiologists, medical students, and clinicians, particularly those working with minority, vulnerable, or underserved populations.

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Группа авторов. The Science of Health Disparities Research

Table of Contents

List of Tables

List of Illustrations

Guide

Pages

The Science of Health Disparities Research

List of Contributors

Foreword

Acknowledgements

1 Definitions, Principles, and Concepts for Minority Health and Health Disparities Research

1.1 Introduction

1.2 NIMHD Mission

1.3 Definitions and Concepts of Minority Health and Health Disparities. 1.3.1 Racial/Ethnic Minority Populations

1.3.2 Minority Health and Minority Health Research

1.3.3 Health Disparities and Health Disparities Research

1.3.4 Is It Minority Health or Health Disparities?

1.3.5 Standardized Measures of Minority Health‐ and Health Disparities‐Related Constructs

1.4 The NIMHD Research Framework: Health Determinants in Action

1.5 Inclusion of Diverse Participants in Clinical Research

1.6 Conclusions

1.7 Key Points

Disclaimer

References

Notes

2 Getting Under the SkinPathways and Processes that Link Social and Biological Determinants of Disease

2.1 Introduction

2.2 Allostasis and Allostatic Load

2.3 The HPA Axis

2.3.1 How We Feed: The Role of the Hypothalamus in Pathways Controlling Feeding and Nutrition

2.3.2 How We Sleep: Light–Day Cycle, Circadian Clock, and Hypothalamic Linkages to Metabolic Control and Sleep

2.3.3 How We Feel: Stress and the Role of HPA Axis in Memory and Mood

2.4 Anticipatory Biology and Behavior: The Embedding of Exposures Across the Life Course

2.4.1 Studies of Stress and Allostatic Load Across the Life Course

2.5 Sleep

2.5.1 Sleep Health Disparities and Allostatic Load

2.5.2 Sleep Health Disparities and Genetics

2.5.3 Methodologies in Sleep Research

2.6 How We Feed: Nutrition and Nutrition‐related Health Disparities

2.7 How We Feel: Mood and Depression

2.8 Summary

2.9 Key Points

Disclaimer

References

Note

3 Racial/Ethnic, Socioeconomic, and Other Social Determinants

3.1 Introduction

3.2 Introduction to the Topic, Including Key Definitions

3.3 Used and Recommended Measures and Research Methods. 3.3.1 Conceptual Model

3.3.2 US Census Definitions

3.3.3 Race Versus Ethnicity

3.4 How and Why this Topic is Important to Minority Health and Health Disparities Research. 3.4.1 The Epidemiological Profile of Racial/Ethnic Minorities. 3.4.1.1 Mortality/Morbidity

3.4.1.2 Life Expectancy

3.4.1.3 Socioeconomic Status

3.4.2 Other Social Determinants. 3.4.2.1 Acculturation

3.4.2.2 Social and Physical Environments

3.5 Selected Examples of the State of the Science in the Field to Illustrate Best Practices. 3.5.1 Exploring Health Disparities in Integrated Communities Study

3.5.2 Hispanic Community Health Study/Study of Latinos

3.5.3 Pittsburgh Hill/Homewood Research on Neighborhoods and Health Study

3.6 Challenges and Future Opportunities. 3.6.1 Biological Links to Social Determinants

3.7 Summary

3.8 Key Points

Disclaimer

References

4 Behavioral Determinants in Population Health and Health Disparities Research

4.1 Introduction

4.2 Importance of Behavioral Determinants to Minority Health and Health Disparities Research

4.3 Relevant Metrics and Research Methods. 4.3.1 Relevant Metrics

4.3.2 Research Methods

4.4 State of the Science: Promising Practices

4.4.1 Salud America!

4.4.2 Health Technology—New Vital Signs

4.4.3 Health Technology—Smartphone Use

4.4.4 Underresearched Constituencies

4.4.5 Advancing the Cycle of Better Care, Better Health, Lower Costs

4.5 Challenges and Future Opportunities

4.6 Summary

4.7 Key Points

Disclaimer

References

5 Sociocultural Environments and Health Disparities ResearchFrameworks, Methods, and Promising Directions

5.1 Introduction

5.2 Selected Overarching Sociocultural Environment Factors. 5.2.1 Culture

5.2.2 Acculturation

5.2.3 Racism

5.2.4 Interconnection of Race/Ethnicity and Socioeconomic Status

5.3 Social Capital and Health Disparities

5.3.1 Definitions and Operationalization

5.3.2 Relationship to Health Disparities

5.3.3 Social Capital Interventions

5.3.4 Future Directions for Social Capital Research

5.4 Implicit Bias of Healthcare Providers

5.4.1 Relationship Between Implicit Bias and Behavior

5.4.2 Promising Interventions that Reduce Biased Behavior

5.5 Sociocultural Factors that Influence the Quality of Healthcare Provider‐Patient Interactions and Communication

5.5.1 Communication Characteristics

5.5.2 Cultural Factors

5.5.3 Factors Related to Individual Values and Beliefs

5.5.4 Conclusion

5.6 Synthesis. 5.6.1 Culture

5.6.2 Adaptations to New Cultural Contexts

5.6.3 Social Capital

5.6.4 Implicit Bias

5.6.5 Patient‐Provider Communication

5.7 Key Points

Disclaimer

References

6 Physical Environment, and Minority Health and Health Disparities Research

6.1 Introduction

6.2 Methodologies and Measures. 6.2.1 Exposure Assessment

6.2.1.1 Geographic Information Systems

6.2.1.2 Community‐level Sampling

6.2.1.3 Personal Sampling

6.2.2 Biomarkers of Exposure

6.2.3 Qualitative Research

6.3 Importance of Physical Environment Determinants to Health Disparities Research

6.3.1 Housing

6.3.2 Food and Green Space Access

6.3.3 Neighborhood Walkability

6.3.4 Air Pollution

6.3.5 Toxic Metals Exposure

6.4 Case Study. 6.4.1 Urban Built Environment: Park Equity in Los Angeles

6.5 Challenges and Opportunities. 6.5.1 Challenges

6.5.2 Opportunities

6.6 Key Points

Disclaimer

References

7 Genome‐wide Genetic Approaches to Metabolic and Inflammatory Health Disparities

7.1 Introduction

7.2 Landscape of Genetic Variation

7.3 Pathogenic Potential of Low‐frequency and Rare Variants

7.4 Admixture in the Americas

7.5 Identifying Disease Genes Associated with Health Disparities: Methods and Approaches

7.5.1 Genome‐wide Association Studies

7.5.2 Mapping by Admixture Linkage Disequilibrium

7.6 Joint Admixture Mapping and Genome‐wide Association Studies for Gene Discovery in Admixed Populations

7.7 Whole‐Genome and Whole‐Exome Sequencing Approaches to Health Disparities

7.8 Summary

7.9 Key Points

Definitions

Disclaimer

References

8 Biologic Factors and Molecular Determinants in Inflammatory and Metabolic Diseases

8.1 Introduction and Approaches

8.2 Asthma

8.3 Metabolic Syndrome, Obesity, and Diabetes

8.4 Lupus and Other Rheumatologic Diseases

8.5 Kidney Disease

8.6 Key Points

Disclaimer

References

9 Insights into the Genomic Landscape of African Ancestry PopulationsImplications for Health and Disease Disparities

9.1 Introduction: Viewing the Complex Architecture of African Genomes from a Global Perspective

9.2 Adaptive Forces that Shaped the Human Genome in Health and Disease among African Ancestry Populations. 9.2.1 Protection Against Malaria

9.2.2 Protection Against African Sleeping Sickness (Trypanosomiasis)

9.2.3 Protection Against Lassa Fever

9.2.4 Ecological Adaptations to Tropical Climate (Hypertension and Skin Pigmentation) 9.2.4.1 Hypertension

9.2.4.2 Dark Skin

9.2.4.3 Evidence of Adaptation with Implications for Metabolic Processes

9.2.4.4 Neglected Tropical Disease

9.3 Pharmacogenomics

9.4 Considerations for Future Studies

9.5 Conclusions

9.6 Key Points

Disclaimer

References

10 Applying Self‐report Measures in Minority Health and Health Disparities Research

10.1 Introduction

10.2 Measurement Issues When Using Self‐report Measures in Diverse Populations

10.2.1 Conceptual Adequacy and Equivalence

10.2.2 Psychometric Adequacy and Equivalence

10.3 Methods for Evaluating Conceptual and Psychometric Properties of Self‐report Measures. 10.3.1 Methods for Assessing Conceptual Adequacy and Equivalence

10.3.2 Methods for Assessing Psychometric Adequacy and Equivalence

10.4 Locating and Selecting Self‐report Measures for Use in Diverse Populations. 10.4.1 Resources for Locating Measures

10.4.2 Template for Reviewing Self‐report Measures for Appropriateness in Your Study

10.5 Adapting Measures for Diverse Populations

10.5.1 Examining the Breadth and Meaning of Constructs

10.5.2 Language Translation of Measures

10.6 Future Directions

10.6.1 Interactions of Socioeconomic Status and Race/Ethnicity Across the Life Course

10.6.2 Measuring Culture and Acculturation Processes

10.7 Conclusions

10.8 Key Points

Disclaimer

References

11 Conducting Community‐based Participatory Research with Minority Communities to Reduce Health Disparities

11.1 Introduction

11.1.1 Learning Objectives

11.2 Conducting Community‐based Participatory Research with Minority Communities to Reduce Health Disparities

11.3 Evidence of CBPR Effectiveness and Advancement in CBPR Evaluation

11.4 Case Studies

11.4.1 Connecting to Testing and Prevention

11.4.2 Healthy Living: The Chinese Lay Health Workers Project

11.4.3 Nuestro Futuro Saludable [Our Healthy Future]

11.4.4 Participatory Health Impact Assessment to Inform Tribal Policy

11.4.5 Pacific Islander “Let's Move”

11.5 Anticipating Challenges and Opportunities in CBPR

11.6 Research Support for CBPR

11.7 Conclusions

11.8 Key Points

Disclaimer

References

12 Racial/Ethnic Health and Healthcare Disparities MeasurementThe Application of the Principles and Methods of Causal Inference

12.1 Introduction

12.2 Aligning Definitions of Disparity with Appropriate Statistical Methods

12.2.1 Definitions of Racial/Ethnic Healthcare Disparity

12.3 A Method of Measuring Healthcare Disparities Incorporating a “Counterfactual” Scenario

12.4 Extending the Use of “Partial Differencing” to Identifying Targets for Health and Healthcare Disparities Reduction Using Decomposition Methods

12.5 Adapting Causal Models to Identify Interventions to Reduce Racial/Ethnic Health Disparities. 12.5.1 Mediators of the Relationship Between Race/Ethnicity and Health Outcomes

12.6 Investigating the Meaning of the Race/Ethnicity Coefficient in Regression Models

12.6.1 Can One Identify the Causal Effect of Race?

12.7 Statistical Methods Used to Evaluate Causal Effects in Intervention Studies. 12.7.1 Experimental Methods: Randomized Controlled Trials and Field Experiments

12.7.2 Quasi‐Experimental Methods: Propensity Scores

12.7.3 Quasi‐Experimental Methods: Instrumental Variables

12.7.4 Quasi‐Experimental Methods: Difference‐in‐Differences

12.8 Conclusion and Limitations

12.9 Key Points

Disclaimer

References

13 Small Area Estimation and Bayesian Disease Mapping for Minority Health and Health Disparities

13.1 Introduction

13.2 Basic Statistical Models for Small Area Estimation

13.2.1 Area‐level Models

13.2.2 Unit‐level Models

13.2.3 Auxiliary Data and Model Selection for Small Area Estimation

13.2.4 Applications of Small Area Estimation in Public Health

13.3 Small Area Estimation: A Brief Practical Guide

13.4 Small Area Estimation for Quantifying Health and Health Disparities of Small Populations

13.5 Bayesian Disease Mapping

13.5.1 Basic Statistical Models for Bayesian disease mapping

13.5.2 Bayesian Hierarchical Spatial Model Specification and Fitting

13.5.3 Applications of Bayesian Hierarchical Spatial Models for Health Disparities Research

13.6 Conclusions

13.7 Key Points

Disclaimer

Acknowledgments

References

Further Reading

Notes

14 Applications of Big Data Science and Analytic Techniques for Health Disparities Research

14.1 Introduction

14.2 Characteristics of Big Data

14.3 Importance of Big Data for Minority Health and Health Disparities Research

14.4 Goals of Big Data Analytics and Opportunities for Health Disparities Research

14.5 Research Methods in Big Data. 14.5.1 Types of Big Data Research Methods and Approaches

14.5.2 Commonly Used Big Data Science Analytics and Models

14.5.2.1 Descriptive Analytics

14.5.2.2 Predictive Analytics

14.5.2.3 Prescriptive Analytics

14.5.2.4 Similarity Analytics

14.5.3 Applied Big Data Analytics and Artificial Intelligence

14.6 Selected Examples Illustrating Best Practices. 14.6.1 Example 1. Electronic Health Record and Its Applications in the Reduction of Health Outcome Disparities

14.6.2 Example 2. National and Global Surveillance for Health Inequities

14.6.3 Example 3. Using the Internet and Social Media to Understand and Address Health Disparities

14.6.4 Example 4: Chronic Disease Management

14.7 Challenges and Opportunities on Big Data Approaches in Health Disparities Research. 14.7.1 Training in Big Data Approaches

14.7.2 Big Data Access

14.7.3 Representation of the Under‐served in Big Data Sets

14.7.4 Emerging Opportunities

14.8 Summary and Conclusion

14.9 Key Points

Disclaimer

References

Notes

15 Complex Systems Science

15.1 Introduction

15.2 Unique Properties of Minority Health and Health Disparities Research

15.3 Data and Methodological Challenges in Health Disparities Research

15.4 Strong Alignment Between Hypothesized Causes of Minority and Health Disparities and Complex Systems Science Approaches

15.5 Types of Questions that Complex Adaptive Systems Models Can Help Answer

15.6 Elements of a Successful Complex Adaptive Systems Model

15.6.1 Engagement with Theory

Example 15.1 Model‐Building Example: Tobacco Town

15.6.2 Selection of a Modeling Approach

15.6.2.1 The Perspective from Which the Research Question Is Analyzing the System: Top‐down, Bottom‐up, or Process‐oriented

15.6.2.2 The Importance of Heterogeneity Among System Entities

15.6.2.3 The Importance of Active Agency

15.6.2.4 The Importance of Geographic and Social Space

15.6.2.5 The Handling of Time

Example 15.2 Model‐Building Example: Tobacco Town

15.6.3 Use of Available Data

Example 15.3 Model‐Building Example: Tobacco Town

15.7 Systems Science as Iterative Research

15.8 Limitations and Challenges

15.9 Key Points

Disclaimer

References

16 Improving Equity in Healthcare through Multilevel Interventions

16.1 What Are Multilevel Interventions?

16.2 Challenges of Multilevel Interventions

16.2.1 Addressing Health Disparities Through Multilevel Interventions

16.2.2 Measures in Multilevel Interventions

16.2.3 Methodology and Evaluation of Multilevel Interventions

16.3 Multilevel Interventions: 2012–2017

16.4 Future Directions

16.5 Case Study to Illustrate Multilevel Interventions

16.5.1 Case Study: Heart‐Healthy Lenoir High Blood Pressure Study

16.6 Key Points

Disclaimer

References

17 Using Implementation Science to Move from Knowledge of Disparities to Achievement of Equity

17.1 Introduction. 17.1.1 Overview of Implementation Science. 17.1.1.1 Definitions

17.1.1.2 Principles

17.1.1.3 Approaches and Methods

17.1.2 Why Health Disparities Research Needs Implementation Science

17.2 Selected Implementation Frameworks Applied to Health Disparities Research

17.2.1 Community‐based Participatory Research

17.2.2 The RE‐AIM Framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance)

17.2.3 Practical, Robust Implementation and Sustainability Model (PRISM)

17.2.4 Consolidated Framework for Implementation (CFIR)

17.2.5 Public Health Critical Race Praxis (PHCR)

17.3 Best Practices in Health Disparities Implementation Science: Selected Examples

17.3.1 Asking Relevant Questions

17.3.2 Testing Multilevel Interventions

17.3.3 Leveraging Technology, Existing Data Sources, and Natural Experiments

17.3.4 Study Designs and Methods

17.3.5 Measures of Implementation Success

17.3.6 Innovative Approaches to Data Analysis

17.3.7 Dissemination of Findings

17.4 Challenges and Opportunities for Implementation Science in Health Disparities Research. 17.4.1 Stakeholder Engagement

17.4.1.1 Improving Researcher and Interventionist Communication Skills and Cultural and Structural Competence

17.4.1.2 Partnering with and Aligning Priorities and Incentives of Diverse Stakeholders

17.4.1.3 Building Trustworthiness

17.4.1.4 Framing and Education about Disparities to Engage Diverse Audiences

17.4.1.5 Case Study: The Johns Hopkins Center for Health Equity Community Advisory Board

17.4.2 Contextual Considerations. 17.4.2.1 Overcoming Limited Infrastructure and Resources

17.4.2.2 Targeting and Tailoring Intervention Approaches to Context and Persons

17.4.2.3 Addressing Social Determinants of Health

17.4.2.4 Increasing Reach

17.4.3 Intervention Design and Delivery. 17.4.3.1 Involving Implementers

17.4.3.2 Training, Technical Support, and Capacity‐building

17.4.3.3 Evaluations, Adjustments, and Reiterations

17.4.3.4 Measurement and Monitoring of Uptake and Fidelity

17.4.4 Planning for Sustainability

17.4.4.1 Sustaining Program Benefits for Target Patient Populations

17.4.4.2 Sustaining Collaborative Partnerships with Key Stakeholders

17.4.4.3 Case Study: Project ReD CHiP

17.5 Summary and Implications for Future Research, Practice, Policy, and Social Change

17.6 Key Points

Disclaimer

References

Notes

18 Healthcare and Public Policy: Challenges and Opportunities for Research

18.1 Summary

18.2 Background/Context

18.3 Key Constructs

18.4 Selected Examples of Healthcare Policy Research

18.4.1 Immigration Reform

18.4.2 The Veterans Affairs Home‐Based Primary Care Model

18.4.3 Oregon Health Insurance Experiment

18.5 Non‐Healthcare Policy Research

18.5.1 Nutrition Program for Women, Infants, and Children

18.5.2 Flint Water Crisis

18.5.3 Minimum Wage Policies

18.5.4 Residential Segregation

18.6 Key Challenges

18.7 Future Directions and Opportunities

18.8 Key Points

Disclaimer

References

Note

19 Addressing Disparities in Access to High‐quality Care

19.1 Racial Disparities as a Quality Problem

19.2 Defining Quality and Access

19.3 Examples of Racial Disparities as a Quality Problem. 19.3.1 Cardiovascular Care and Implantable Defibrillators

19.3.2 End‐Stage Renal Disease

19.4 Addressing Disparities in Access to Quality Care

19.5 Steps to Addressing Healthcare Disparities. 19.5.1 Identify and Prioritize Reducing Healthcare Disparities. 19.5.1.1 Relevant and Reliable Data are Needed

19.5.1.1.1 Measuring Race and Ethnicity

19.5.1.1.2 Other Measurement Challenges

19.5.1.2 To Improve Patient Outcomes, Basic Quality Improvement Structures and Processes Must be in Place

19.5.1.3 Disparities Must be Recognized as a Quality Problem

19.6 Implement Evidence‐based Strategies to Eliminate Disparities. 19.6.1 After Prioritizing Health Equity and Identifying Existing Health Disparities, the Next Challenge is to Develop an Intervention

19.6.2 Determine the Root Cause(s) of the Disparity

19.6.3 Consider the Levels of Influence of Patients, Providers, the Microsystem (Immediate Care Team), Organizations, Communities, and Policy

19.6.4 Build on Prior Work and Modify for Specific Context

19.6.5 Implement, Evaluate, and Adjust the Intervention

19.7 Invest in Health Equity Performance Measures. 19.7.1 One Must Define What Is Meant by Equity in Quality

19.7.2 Measure Capacity for Health Equity

19.8 Incentivize the Reduction of Health Disparities. 19.8.1 Design Quality Improvement and Payment Interventions to Achieve Equity

19.8.2 Consider the Impact of Social Risk Factors on Public Reporting and Pay‐For‐Performance

19.8.3 Develop a Business Case to Enable Organizations to Implement and Sustain Health Equity Interventions

19.9 Advice for a Healthcare Disparities Researcher. 19.9.1 Pick an Important Research Question

19.9.2 Review the Relevant Literature

19.9.3 Choose, Adapt, or Develop a Conceptual Model to Guide Your Research

19.9.4 Select the Appropriate Quantitative and/or Qualitative Approach for Your Study Question

19.9.5 Use the Appropriate Analytical Methods

19.9.5.1 Qualitative Research as Part of Root Cause Analysis to Identify Drivers of Disparities and Design Solutions

19.9.5.2 Multilevel Modeling Exploring Individual and Place Effects

19.9.5.3 Mixed‐Method Research that Covers Clinical Outcomes, the Process of Organizational Change, and Economic Outcomes

19.10 Conclusion

19.11 Key Points

Disclaimer

References

Note

20 Health Communication as a Mediator of Health and Healthcare Disparities

20.1 Introduction: Scope and Conceptual Framework. 20.1.1 Prevalence of the Problem

20.1.2 Narrative, Elicitation, Explanatory, and Relationship Aspects

20.1.3 Communication Domains Affecting Health and Healthcare Outcomes

20.1.3.1 Respect

20.1.3.2 Trust

20.1.3.3 Participation in Decision Making

20.1.4 An Operational and Contextual Framework for Organizing Communication in the Clinical Encounter

20.2 Risk Factors for Health Communication Disparities and Impact on Communication and Health Outcomes. 20.2.1 Limited Health Literacy

20.2.2 Limited English Proficiency and Patient‐Provider Language Discordance

20.2.3 Discordance in Race/Ethnicity

20.2.4 Implicit Bias

20.3 An Example of Systems‐based Approaches: Creating Health‐Literate Healthcare Systems. 20.3.1 Defining Health‐Literate Organizations

20.3.2 Clinician‐Patient Level Interventions

20.3.3 System‐Patient‐Level Interventions

20.3.3.1 Employing Appropriate Health Education Materials

20.3.3.2 Leveraging Accessible Health Information Technology

20.3.3.3 Standardizing Medication Drug Labels and Drug Information

20.3.3.4 Employing Disease Management Programs

20.3.3.5 Creating an Empowering Environment

20.3.3.6 Clinician Communication Training

20.3.4 Community‐level Interventions

20.4 Interventions to Mitigate Other Communication Risk Factors

20.4.1 Cultural Competence of Healthcare Providers and Organizations

20.4.2 Diversity of Health Professional Workforce

20.4.3 Building the Healthcare Team: Professional Medical Interpreters and Lay Health Educators and Patient Navigators

20.5 Future Directions for Communications Research: Measurement and Implementation. 20.5.1 Health Literacy

20.5.1.1 Measurement

20.5.1.2 Verbal, Auditory, and Other Cognitive Skills

20.5.1.3 Study Designs

20.5.1.4 Mobile Health Technology

20.5.1.5 Health Communication Messengers and Vehicles

20.5.2 Sociodemographic Concordance

20.5.3 Implicit Bias

20.5.4 Direct Observation of Health Communication Behaviors

20.5.5 Patient Experience and Patient‐Reported Outcomes Measurement

20.6 Key Points

Disclaimer

References

Note

21 Comparative Effectiveness Research in Health Disparity Populations

21.1 Introduction

21.2 Background

21.3 CER Study Designs

21.4 CER Measures

21.5 Approaches to CER

21.6 Applications of CER in Health Disparity Populations

21.6.1 Examples of CER Questions in Minority Health

21.7 Social Determinants of Health

21.8 Groups with Particular Needs for CER

21.8.1 African Americans

21.8.2 Hispanics/Latinos

21.8.3 Sexual and Gender Minorities

21.8.4 American Indians and Alaska Natives

21.8.5 Underserved Rural Populations

21.8.6 Considerations for the CER Needs of Health Disparity Populations

21.9 Major Public Health/Policy Interventions as a Result of CER

21.10 Multisectoral Impact of CER on Disparities

21.11 Future Directions of CER

21.12 Key Points

Disclaimer

References

Note

22 The Role of Electronic Health Records and Health Information Technology in Addressing Health Disparities

22.1 Introduction

22.2 Healthcare Data and Electronic Records

22.3 Overview of Health Information Technologies

22.3.1 Personal Health Record

22.3.2 Consumer Health IT Applications

22.3.3 Clinical Decisions Support Systems

22.3.4 Electronic Disease Registries

22.3.5 Telehealth, Telemedicine, and Mobile Health

22.3.6 Health Information Technologies Data

22.4 Application of Digital Health and Health Information Technologies to Addressing Disparities

22.4.1 Population‐level Health Outcomes

22.4.1.1 Access and Healthcare Delivery

22.4.1.2 Enhanced Surveillance and Monitoring Activities

22.4.1.3 Adherence to Protocols and Quality Care Metrics

22.4.2 Consumer or Individual‐level Health Outcomes

22.4.2.1 Prevention

22.4.2.2 Treatment

22.4.2.3 Management

22.5 Conclusions: Challenges and Opportunities in Health Information Technologies Implementation

22.6 Key Points

Acknowledgments

Disclaimer

References

Note

23 Precision Medicine and Health Disparities

Abstract

23.1 The Promise of Precision Medicine. 23.1.1 Precision Medicine Defined

23.1.2 Natural History of Precision Medicine

23.1.3 Precision Medicine and Health Disparities

23.1.4 Pharmacogenomics‐Biologic Predictors of Disparities in Treatment Response

23.1.5 Existing Gaps in Precision Medicine

23.2 Methods in Precision Medicine and Applications in Health Disparities. 23.2.1 Methods of Characterizing Individuals. 23.2.1.1 Genetics Approaches: Genome‐wide Association Study and Phenome‐wide Association Study

23.2.1.2 Proteomics and Metabolomics

23.2.1.3 Person‐specific Modeling

23.2.1.4 Data Integration

23.2.2 Methods of Predicting Disease Risk

23.3 Future Directions and Research Needs

23.3.1 Engaging Minority Communities

23.3.2 Engaging Health Providers

23.3.3 Challenges Unique to Precision Medicine

23.4 Genomic Health Literacy

23.4.1 Cross‐training in Precision Medicine and Health Disparities

23.4.2 Integration of Cultural, Social, and Environmental Data

23.5 Success in Precision Medicine

23.6 Conclusion

23.7 Key Points

Acknowledgments

Disclaimer

References

Notes

24 Recruitment, Inclusion, and Diversity in Clinical Trials

24.1 Background/Context

24.2 Understanding Barriers to Inclusion in Clinical Research

24.2.1 Patient‐level Barriers

24.2.2 Investigator‐level Barriers

24.2.3 Structural and Institutional Barriers

24.3 Best Practices for Optimizing Inclusion in Clinical Research

24.3.1 Site Selection

24.3.2 Screening

24.3.3 Community Engagement

24.3.4 Communication Strategies

24.3.5 Retention

24.4 Future Directions and Research Needs. 24.4.1 Federal Policies

24.4.2 Interactive Online Toolkits

24.5 Conclusion

24.6 Key Points

Disclaimer

References

Note

25 Sexual and Gender Minority Health DisparitiesConcepts, Methods, and Future Directions

25.1 Introduction to the Topic, Including Key Definitions

25.2 How and Why This Topic is Important to Minority Health and Health Disparities Research

25.3 Most Relevant Measures and Research Methods Used and Recommended

25.3.1 Individual/Interpersonal Measures

25.3.2 Structural Measures

25.4 Selected Examples of the State of the Science to Illustrate Best Practices

25.4.1 Cross‐sectional Designs

25.4.2 Daily Diary Studies

25.4.3 Quasi‐experiments

25.4.4 Field Experiments

25.4.5 Interventions

25.5 Challenges and Future Opportunities

25.5.1 Methodological Challenges Related to Sampling SGM Populations

25.5.2 Ethical Challenges and Considerations

25.5.3 Directions for Future Research

25.5.4 Methodological and Measurement Innovations

25.5.5 Intersectional Perspectives

25.5.6 Interventions to Reduce Stigma and Its Negative Consequences

25.5.7 Research on Other Determinants of SGM Health Disparities

25.6 Summary

25.7 Key Points

Disclaimer

References

Notes

26 Workforce Diversity and Capacity Building to Address Health Disparities

26.1 Background

26.2 Introduction

26.3 Diversity in the US Scientific and Health Workforce

26.4 Diversity and Health Disparities: What Are the Links?

26.5 Methodological Approaches to Understanding Workforce Diversity and Health Disparities

26.5.1 Expand Scholarship of the Science of Diversity as Related to Health Outcomes

26.5.2 Promote Rigorous Data Collection and Evaluation

26.5.3 Expand Study of Sociocultural Factors as Related to Health Outcomes

26.5.4 Can Scientific Workforce Diversity Partnerships with the Private Sector and Community Organizations Reduce Health Disparities?

26.6 Closing Thoughts

26.7 Key Points

Acknowledgments

Disclaimer

References

Notes

Index

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Edited by

.....

Sonjia Kenya Division of General Internal Medicine, Department of Medicine, Miller School of Medicine University of Miami Miami, FL USA

Jeffrey B. Kopp Kidney Diseases Branch, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health Bethesda, MD USA

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