Appendix C

Commissioned Paper on a Proposed Framework for Integration of Health Care Quality Measures Related to Health Literacy, Language Access, and Cultural Competence

April 24, 2017
Contract Number: 2000007495

Submitted by:
National Committee for Quality Assurance
1100 13th Street NW, Suite 1000
Washington, DC 20005
Telephone: (202) 955-3500
Fax: (202) 955-3599

Project Director: Sarah Hudson Scholle
National Committee for Quality Assurance Staff:
Jessica Briefer French
Judy Ng
Madhyatu Taylor

Commissioned by the Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine

EXECUTIVE SUMMARY

Health literacy, language access, and cultural competence are commonly suggested concepts that address the provision of quality care to diverse populations, including those facing persistent health care disparities based on individual characteristics, such as race, ethnicity, or culture, as well as communication, literacy, and language needs. Although health literacy, language access, and cultural competence are linked concepts, each concept has grown out of distinct histories and each has a different focus. This fragmentation has impeded the implementation of relevant measures for quality improvement and accountability, especially given the complaints about proliferating quality measures.

The rapid expansion of value-based payment (VBP) models presents further opportunities and challenges for at-risk populations amid growing recognition that social risk factors play an important role in quality measurement. Because it may take more resources to care for patients with social risk factors—and because it may be more difficult to achieve higher performance on quality of care measures—there are concerns that VBPs may have unintended consequences for providers who care for such at-risk populations. An integrated framework for addressing health literacy, language access, and cultural competence will support greater attention to these concepts in VBP arrangements. Hence, the purpose of this paper is to establish a framework to integrate the measurement of health literacy, language access, and cultural competence, with the primary goal of using this integrated measurement approach to improve care quality and reduce disparities.

Building on evidence about the common elements of effective interventions to improve patient understanding and engagement in health care and the essential components of a care system for addressing health literacy, language access, and cultural competence, we propose an integrated, patient-centered framework for measurement.

Our review of existing measures finds many structure, process, and patient experience measures relevant to this framework that can be readily implemented through a patient-centered care lens, yet challenges remain.

We recommend four strategies for using an integrated, patient-centered framework and offer recommendations to guide broader implementation and evaluation of these critical aspects of care:

1. Use structure measures to build capacity and demonstrate capability to serve the needs of a diverse population.
2. Develop streamlined tools and new techniques to gather data on patient experiences.
3. Stratify existing quality measures to target improvement and equity.
4. Develop packages of measures for vulnerable subpopulations.

More work will be needed to apply this integrated, patient-centered framework to the adaptation and development of measures that can be used for quality improvement and accountability. Measures and methods need to be updated to address gaps and inconsistencies. This will require a multistakeholder process—including patients, representatives of different types of health care organizations, and payers—to fully vet and develop these ideas.

1.0 INTRODUCTION

Health literacy, language access, and cultural competence are commonly suggested concepts that address the provision of quality care to diverse and at-risk populations, including those facing persistent health care disparities based on individual characteristics, such as race, ethnicity, or culture, as well as communication, literacy, and language needs.^1,2 Although health literacy, language access, and cultural competence are linked concepts and share commonalities—including overlapping populations, similar implications for care providers or organizations, and the primary goal of improving quality of care—all of these concepts have grown out of distinct histories that emphasize different aspects of care, subgoals, and patient subgroups that do not always overlap (e.g., health literacy efforts tend toward improving quality for a broad array of patients; language access and cultural competence efforts tend toward improving quality by focusing on racial/ethnic minorities or other at-risk populations).^1,3

These separate histories have resulted in fragmentation, with different constituencies advocating their own quality improvement approaches and multiple quality measures to monitor at-risk populations, which makes implementation challenging, especially in an era of complaints about proliferating quality measures and demands for measure alignment across payers and settings. Both public and private entities have acknowledged the existence of multiple measures, and there have been important efforts

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¹ National Academies of Sciences, Engineering, and Medicine. (2016). Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press.

² National Committee for Quality Assurance. (2015, March). Deliverable 2.1: Culturally and Linguistically Appropriate Services (CLAS) & Disparities Literature Review. Submitted to the Centers for Medicare & Medicaid Services, March 18, 2015, under contract number: HHSM-500-2014-00442G.

³ Beach, M. C., Saha, S., and Cooper, L. A. (2006, October). The Role and Relationship of Cultural Competence and Patient-Centeredness in Health Care Quality. Retrieved from http://www.commonwealthfund.org/~/media/files/publications/fund-report/2006/oct/the-role-and-relationship-of-cultural-competence-and-patient-centeredness-in-healthcare-quality/beach_rolerelationshipcultcomppatient-cent_960-pdf (accessed February 21, 2018).

to align measures across different settings. For example, efforts to enhance measure alignment and reduce complexity have been under way via the Institute of Medicine’s (IOM’s) report Vital Signs and the Core Quality Measure Collaborative involving the Centers for Medicare & Medicaid Services (CMS), America’s Health Insurance Plans (AHIP), and many other public and private entities.^4,5

The rapid expansion of VBP models has presented further opportunities and challenges for at-risk populations. VBP programs aim to reward providers for the quality—not just the quantity—of care provided.⁶ For example, the implementation of CMS’s new Merit-Based Incentive Payment System (MIPS) ties payment directly to clinician performance in four areas: quality, resource use, clinical practice improvement activities, and advancing care information (meaningful use of electronic health records).⁷ In the wake of this shift to VBP, there is growing recognition that social risk factors—such as race/ethnicity, income, education, environmental factors, and available resources—should play a role in quality measurement.^8,9 Because it may take more resources to care for patients with these social risk factors—and because it may be more difficult to achieve higher performance on quality of care measures—there are concerns that VBPs may have unintended consequences for providers who care for such at-risk populations.^8,9,10 Strategies for addressing these issues include measuring health equity, setting high standards for all populations, and considering incentives for organizations that achieve or improve performance for at-risk populations.¹⁰ These may include strategies to address the unique needs of these populations as they relate to health literacy, language access, and

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⁴ Institute of Medicine. (2015). Vital Signs: Core Metrics for Health and Health Care Progress. Washington, DC: The National Academies Press.

⁵ Centers for Medicare & Medicaid Services. (2016, February 16). Core Measures. Retrieved from https://www.cms.gov/medicare/quality-initiatives-patient-assessment-instruments/qualitymeasures/core-measures.html (accessed February 21, 2018).

⁶ Centers for Medicare & Medicaid Services. (n.d.). Value-Based Programs. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/Value-Based-Programs/Value-Based-Programs.html (accessed February 21, 2018).

⁷ Centers for Medicare & Medicaid Services. (n.d.). Quality Payment Program: Learn About the Program. Retrieved from https://qpp.cms.gov/learn/qpp (accessed February 21, 2018).

⁸ U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. (2016, December). Report to Congress: Social Risk Factors and Performance Under Medicare’s Value-Based Purchasing Programs. Retrieved from https://aspe.hhs.gov/system/files/pdf/253971/ASPESESRTCfull.pdf (accessed February 21, 2018).

⁹ National Academies of Sciences, Engineering, and Medicine. (2017). Accounting for Social Risk Factors in Medicare Payment. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/23635 (accessed February 21, 2018).

¹⁰ Joynt, K. E., De Lew, N., Sheingold, S. H., Conway, P. H., Goodrich, K., and Epstein, A. M. (2017). Should Medicare Value-Based Purchasing Take Social Risk into Account? New England Journal of Medicine, 376(6), 510–513.

cultural competence, all of which may disproportionately affect populations facing multiple social risk factors.

An integrated framework for addressing health literacy, language access, and cultural competence will support greater attention to these concepts in VBP arrangements. Because quality metrics play a key role in understanding performance, identifying care gaps, and accountability via VBP mechanisms, measurement approaches will be foundational to improving care. To that end, the purpose of this paper is to establish a framework to integrate the measurement of health literacy, language access, and cultural competence, with the primary goal of using this integrated measurement approach to improve care quality and reduce disparities. While we have been referring to three general terms—health literacy, language access, and cultural competence—the remainder of this paper further defines other relevant concepts (e.g., communication and language assistance as an expansion of language access), explores opportunities for alignment between multiple linked concepts, provides examples of known effective interventions addressing these concepts, details opportunities for quality measurement, and offers recommendations for using an integrated, patient-centered framework to guide broader implementation and evaluation of these critical aspects of care.

2.0 DEFINITIONS OF CONCEPTS

In this section, we provide further detail regarding the definitions and background for the three general concepts of health literacy, language access, and cultural competence. For each concept, we provide a summary that aims to address the following: (1) how is the concept defined? (2) when was the concept first notably publicized and/or when did it gain wider attention? (3) what is the scope of the problem? and (4) what are the implications for health care? We also describe recent efforts to use more expansive concepts as presented in the enhanced National Standards for Culturally and Linguistically Appropriate Services, as well as the simultaneous efforts to promote the broadly defined concept of patient-centered care. Definitions of these concepts are provided in Exhibit 1.

2.1 General Concepts: Health Literacy, Language Access, and Cultural Competence

Health literacy is commonly defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health informa-

tion needed to make appropriate health decisions.”^11,12,13 The IOM notably highlighted health literacy for the first time in its 2004 report Health Literacy: A Prescription to End Confusion.¹³ Health literacy not only affects one’s ability to read and understand health information but also involves speaking, writing, and numeracy skills (e.g., calculating blood sugar levels and comparing health plan deductibles require math skills) and conceptual knowledge.^11,13

Importantly, health literacy affects a large swath of the population and is not necessarily focused on specific subgroups, as “even well educated people with strong reading and writing skills may have trouble comprehending a medical form or doctor’s instructions.”¹³ It is estimated that nearly half of all American adults (or 90 million people) have difficulty understanding and processing health information¹³ and that only 12 percent of adults have proficient health literacy.^11,14

Health literacy broadly affects one’s ability to navigate the health system and manage one’s condition(s) with important health and health care implications. Low health literacy has been linked to poor outcomes, such as higher rates of hospitalization and use of emergency services and less frequent use of preventive services—all of which are associated with higher health care costs.^11,13 There are existing tools that assess health literacy levels, which can be used for quality improvement, training, and program planning purposes.^15,16 However, there are important challenges, including evolving definitions¹⁶ and questions about the usefulness of such assessments, given the near universality of the problem and recommendations for a “universal precautions” approach.¹⁷

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¹¹ U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (n.d.). Health Literacy Basics. Retrieved from https://health.gov/communication/literacy/quickguide/factsbasic.htm (accessed February 21, 2018).

¹² Ratzan, S. C., and Parker, R. M. (2000). Introduction. In: National Library of Medicine Current Bibliographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.

¹³ Institute of Medicine. (2004). Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press.

¹⁴ Kirsch, I. S., Jungeblut, A., Jenkins, L., and Kolstad, A. (1993). Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey (NALS). Washington, DC: National Center for Education Statistics, U.S. Department of Education.

¹⁵ Agency for Healthcare Research and Quality. (2016, February). Health Literacy Measurement Tools (Revised). Retrieved from https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy/index.html (accessed February 21, 2018).

¹⁶ Boston University, Communicate Health, and the National Library of Medicine. (2017). Health Literacy Tool Shed. Retrieved from http://healthliteracy.bu.edu/about (accessed February 21, 2018).

¹⁷ Brega, A., Barnard, J., Mabachi, N., Weiss, B., DeWalt, D., Brach, C., Cifuentes, M., Albright, K., and West, D. (2015, January). AHRQ Health Literacy Universal Precautions Toolkit, Second Edition. Rockville, MD: Agency for Healthcare Research and Quality.

Language Access

The U.S. Department of Health and Human Services (HHS) 2013 Language Access Plan defines language access as being achieved “when individuals with LEP [limited English proficiency] can communicate effectively with HHS employees and contractors and participate in HHS programs and activities.”^1,18 To facilitate language access, care providers, organizations, and other entities may provide “language assistance,” which is defined as “all oral and written language services needed to assist individuals with LEP to communicate effectively with HHS staff and contractors and gain meaningful access and equal opportunity to participate in the services, activities programs or other benefits administered by the HHS.”¹⁷ Viewed alternatively, and as framed by the National Academies of Sciences, Engineering, and Medicine (the National Academies), language access “focuses on equity,” while language assistance “focuses on the methods of service delivery, whether it be in-person sign language or spoken language interpreters, video remote interpreting, or remote simultaneous medical interpreting.”¹

The issue of language access is not new, having gained national attention in the 1960s, when Title VI of the Civil Rights Act of 1964 required recipients of federal financial assistance to take “reasonable steps” to consider persons with LEP within their programs and activities.¹⁹ Language access has also expanded to include communication issues beyond LEP—including the communication needs of people with visual, hearing, or speech disabilities—and as such, other important U.S. regulations also address language access (e.g., the Americans with Disabilities Act [ADA] and the U.S. Department of Justice’s regulations to implement the ADA requirements).²⁰ We further discuss communication and language assistance in section 2.2 below.

It is estimated that 24.5 million people (8.6 percent) in the United States have LEP.²¹ The health implications are broad: LEP is associated with a higher risk of being uninsured, as well as medical errors and various

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¹ National Academies of Sciences, Engineering, and Medicine. (2016). Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press.

¹⁷ Brega, A., Barnard, J., Mabachi, N., Weiss, B., DeWalt, D., Brach, C., Cifuentes, M., Albright, K., and West, D. (2015, January). AHRQ Health Literacy Universal Precautions Toolkit, Second Edition. Rockville, MD: Agency for Healthcare Research and Quality.

¹⁸ U.S. Department of Health and Human Services. (2013). Language Access Plan. Retrieved from https://www.hhs.gov/sites/default/files/2013-hhs-language-access-plan.pdf?language=en (accessed February 21, 2018).

¹⁹ U.S. Department of Health and Human Services, Office for Civil Rights. (n.d.). Civil Rights for Individuals and Advocates Special Topics: Limited English Proficiency. Retrieved from https://www.hhs.gov/civil-rights/for-individuals/special-topics/limited-english-proficiency/index.html?language=es (accessed February 21, 2018).

²⁰ U.S. Department of Justice, Civil Rights Division, Disability Rights Section. (2014, January). Americans with Disabilities Act Requirements: Effective Communication. Retrieved from https://www.ada.gov/effective-comm.htm (accessed February 21, 2018).

²¹ Gonzales, G. (2014, May). Brief 40: State Estimates of Limited English Proficiency (LEP) by Health Insurance Status. Retrieved from http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2014/rwjf414189 (accessed February 21, 2018).

patient safety problems, to name a few.^2,19 The problems associated with LEP make language access critical for achieving access to high-quality care. The diversity of people with LEP also means that language access efforts must account for the diversity of languages that the population may use.

Cultural Competence

HHS Office of Minority Health (OMH) issued a set of National Culturally and Linguistically Appropriate Services (CLAS) Standards defining cultural competence as “a set of congruent behaviors, attitudes, and policies that come together in a system, agency, or among professionals that enables effective work in cross-cultural situations.”²² Cultural competence may be viewed as a strategy that health care providers, organizations, and other entities use to improve quality of care and reduce health care disparities, primarily by providing services that are respectful of and responsive to diverse populations, including populations that vary by race, ethnicity, culture, or language proficiency.^1,23 Cultural competence may also be viewed as the ability of—not just a strategy used by—providers and entities to provide such services.¹

The term “cultural competence” began emerging more consistently in relation to health care in the 1990s.³ An important driver behind this was the increasing diversity of the United States population, with clinicians seeing patients with more varying perspectives regarding health, as influenced by their social or cultural background.^1,22 Another important driver was the growing evidence of persistent racial/ethnic disparities in health care and the importance of providing culturally competent, patient-centered care to address these disparities and improve care quality.^1,3,22 Two key IOM reports shone a national spotlight on these issues: in 2001, Crossing the Quality Chasm, and in 2002, Unequal Treatment.^3,22,24,25 Outside the health policy and research world, an acclaimed 1997 book and winner of the National Book Critics Circle Award, The Spirit Catches You and You Fall Down by Anne Fadiman, brought the discussion of “ways in which American medicine is practiced across cultures” further into medical and

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¹ National Academies of Sciences, Engineering, and Medicine. (2016). Integrating Health Literacy, Cultural Competence, and Language Access Services: Workshop Summary. Washington, DC: The National Academies Press.

² National Committee for Quality Assurance. (2015, March). Deliverable 2.1: Culturally and Linguistically Appropriate Services (CLAS) & Disparities Literature Review. Submitted to the Centers for Medicare & Medicaid Services, March 18, 2015, under contract number: HHSM-500-2014-00442G.

³ Beach, M. C., Saha, S., and Cooper, L. A. (2006, October). The Role and Relationship of Cultural Competence and Patient-Centeredness in Health Care Quality. Retrieved from http://www.commonwealthfund.org/~/media/files/publications/fund-report/2006/oct/the-role-and-relationship-of-cultural-competence-and-patient-centeredness-in-healthcare-quality/beach_rolerelationshipcultcomppatient-cent_960-pdf (accessed February 21, 2018).

¹⁹ U.S. Department of Health and Human Services, Office for Civil Rights. (n.d.). Civil Rights for Individuals and Advocates Special Topics: Limited English Proficiency. Retrieved from https://www.hhs.gov/civil-rights/for-individuals/special-topics/limited-english-proficiency/index.html?language=es (accessed February 21, 2018).

²² U.S. Department of Health and Human Services, Office of Public Health and Science, Office of Minority Health. (2001, March). National Standards for Culturally and Linguistically Appropriate Services in Health Care: Final Report. Retrieved from https://minorityhealth.hhs.gov/assets/pdf/checked/finalreport.pdf (accessed February 21, 2018).

²³ Betancourt, J. R., Green A. R., Carrillo J. E., and Park, E. R. (2005). Cultural Competence and Health Care Disparities: Key Perspectives and Trends. Health Affairs, 24(2), 499–505.

²⁴ Institute of Medicine. (2001). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press.

²⁵ Institute of Medicine. (2002). Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press.

other circles and highlighted the important difference between cultural constructs related to health and illness.²⁶

As the population of racial and ethnic minorities continues growing, the cultural competence movement is expected to continue expanding. The U.S. Census Bureau estimates that by 2020 the majority of children in the United States will be part of a minority racial or ethnic group, with the population as a whole expected to follow this trend: by 2060, the minority population is projected to rise to 56 percent of the total population—up from 38 percent in 2014.²⁷ Given the known problems associated with gaps in culturally competent care, the implications for health care are pronounced. There is evidence that the lack of cultural competence presents care barriers for many populations, including barriers related to cancer screenings and care, mental health diagnosis and treatment, maternal health outcomes, and sexually transmitted disease.² The delivery of culturally competent care will be especially salient in addressing the disparities that affect diverse populations.

2.2 Expanded Concepts Based on National CLAS Standards and Patient-Centered Care

More recent efforts to expand and align the focus of health literacy, language access, and cultural competence have pointed out the interrelatedness of these concepts and suggested new terminology. One important effort is the enhancement of the OMH National CLAS Standards (revised and updated in 2013) that introduced more expansive terms relating to communication and language access, culture, and understandable care.²⁸ In particular, the enhanced standards expand the concept of culture to be more explicitly inclusive of populations beyond racial and ethnic minorities. The enhancement also adds “communication and language assistance” as a theme beyond language access to better acknowledge communication needs beyond LEP. Finally, the enhancement expands the concept of understandable care to address broader aspects of care and services and incorporates health literacy concepts. This section briefly summarizes each of these three

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²⁶ Fox, M. (2012, September 14). Lia Lee Dies; Life Went On Around Her, Redefining Care. The New York Times. Retrieved from http://www.nytimes.com/2012/09/15/us/life-went-on-around-her-redefining-care-by-bridging-a-divide.html (accessed February 21, 2018).

²⁷ Colby, S. L., and Ortman, J. M. (2015, March). Projections of the Size and Composition of the U.S. Population: 2014 to 2060. Retrieved from https://www.census.gov/content/dam/Census/library/publications/2015/demo/p25-1143.pdf (accessed February 21, 2018).

²⁸ U.S. Department of Health and Human Services, Office of Minority Health. (2013, April). National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Policy and Practice. Retrieved from https://www.thinkculturalhealth.hhs.gov/pdfs/EnhancedCLASStandardsBlueprint.pdf (accessed February 21, 2018).

expanded concepts. Furthermore, because the enhanced standards broadly frame these expanded concepts in relation to longer-existing concepts of culturally and linguistically appropriate services and patient-centered care, we summarize these two additional concepts.

Culture

The enhanced National CLAS Standards adopt a broader definition of culture to refer to “the integrated pattern of thoughts, communications, actions, customs, beliefs, values, and institutions associated, wholly or partially, with racial, ethnic, or linguistic groups, as well as with religious, spiritual, biological, geographical, or sociological characteristics.”²⁸ The enhanced definition more explicitly recognizes the broad manifestations of culture beyond just racial and ethnic minorities and also provides an “increased opportunity . . . to identify and use similarities” to improve health care and quality.²⁸

Communication and Language Assistance

The enhanced standards also added the theme of “communication and language assistance,” in lieu of “language access,” to more broadly cover all communication needs, not just LEP. The enhanced standards define communication and language assistance as encompassing “all communication needs and services, including sign language, braille, oral interpretation, and written translation.”²⁸ This update is more specific in acknowledging the needs of those with certain disabilities and impairments—such as visual, hearing, speech, and cognitive impairments.²⁸ As mentioned previously, under the definition of “language access,” “language assistance” may also be viewed as the means or process by which communication needs are met.¹

Understandable Care and Services

Under the enhanced standards, understandable care and services

This definition more explicitly acknowledges the same concepts that are salient to health literacy, including the importance of conceptual knowledge and comprehension and the need to ensure health information is comprehensible even to those who may have hearing or other impairments. This definition also focuses on the responsibility of the health care organization to provide effective communication.

CLAS

Commonly defined as health care services that are respectful of and responsive to cultural and linguistic needs, the provision of CLAS has been identified as an important approach to addressing health care disparities based on race, ethnicity, culture, language needs, health literacy, and communication needs.² At their core, both the original and enhanced National CLAS Standards provide an organizing framework in which health care providers and organizations may provide care and services to meet the needs of diverse populations under the reasoning that CLAS respond to demographic and other differences, reduce disparities, and improve quality of care. The enhanced National CLAS Standards specifically focus on areas pertaining to (1) effective, equitable, understandable, and respectful care; (2) governance, leadership, and workforce; (3) communication and language assistance; and (4) engagement, continuous improvement, and accountability.²⁸ The standards also provide an additional framework for integrating concepts that may address health literacy, language access, and cultural competence, with the enhanced standards acknowledging the broader definitions and interrelated constructs that may be entailed within the three concepts.

Patient-Centered Care

Simultaneous with the rise in efforts to promote health literacy, communication and language assistance, and cultural competence, the concept of patient-centered care has gained broad support. Patient-centered care is defined in the IOM’s seminal 2001 report Crossing the Quality Chasm as a core component of quality and includes care that is “respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”²⁴ The concept of patient-centeredness in care is not new, however, having first emerged in the 1960s.³ The primary aim of patient-centered care is broader than that of, for example, language access or cultural competence, as it emphasizes individualized care, as well as the patient–provider relationship, that may elevate quality of care for all patients—not just a cultural, linguistic, or other subgroups.³ In the 1990s, the Picker Institute along with the

Commonwealth Fund further defined eight dimensions (“principles”) of patient-centered care, including respect for patients’ values, preferences, and expressed needs; coordination and integration of care; information, communication, and education; physical comfort; emotional support and alleviation of fear and anxiety; involvement of family and friends; transition and continuity; and access to care.²⁹ Many of these principles are directly related to the concepts of health literacy, language access, and cultural competence. With the publication of the IOM’s 2001 report, the patient-centered care concept was notably “enshrined” and pushed into prominent, national discussion.³⁰

Patient-centered care may be applied at many levels, not just that of the patient–provider relationship, including that of a health care practice, a hospital, or a health care plan or system.^3,28 This philosophy of patient-centered care involves an organizational focus that incorporates a patient’s individual needs and preferences through all levels of care delivery and the care system. Indeed, the patient-centered medical home (PCMH) has evolved as a promising model for improving health care and redefining how primary health is organized and delivered.³¹

In the next section, we propose an integrated, patient-centered framework for integrating the concepts of health literacy, communication and language assistance, and cultural competence and describe the common domains that link these concepts to each other and to patient-centered care.

3.0 PROPOSED FRAMEWORK FOR MEASURE ALIGNMENT

To better understand opportunities for measurement integration, we propose an integrated, patient-centered framework for aligning the concepts of health literacy, communication and language assistance, cultural competence, and patient-centered care (see Exhibit 2 in Appendix D). Although the original charge for this paper was to suggest an integrated framework for the measurement of health literacy, cultural competence, and language access, we applied the broader terms or meanings as described in the enhanced National CLAS Standards, including communication and language assistance, and we included patient-centered care as a complementary and expansive approach to addressing similar or related concerns. For each area, we identify the components, activities, or expectations based on

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²⁸ U.S. Department of Health and Human Services, Office of Minority Health. (2013, April). National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Policy and Practice. Retrieved from https://www.thinkculturalhealth.hhs.gov/pdfs/EnhancedCLASStandardsBlueprint.pdf (accessed February 21, 2018).

²⁹ Picker Institute. (n.d.). Principles of Patient-Centered Care. Retrieved from http://pickerinstitute.org/about/picker-principles (accessed February 21, 2018).

³⁰ Epstein, R. M., and Street, Jr., R. L. (2011). The values and value of patient-centered care. Annals of Family Medicine, 9(2), 100–103.

³¹ Agency for Healthcare Research and Quality, Patient Centered Medical Home (PCMH) Resource Center. (n.d.). Defining the PCMH. Retrieved from https://pcmh.ahrq.gov/page/defining-pcmh (accessed February 21, 2018).

authoritative sources and relevant, evidence-based interventions that have been demonstrated to address health literacy and improve cultural competence, patient understanding, and patient engagement. We posit that these components are well aligned and strong candidates for integrated, patient-centered measurement.

3.1 Evidence for Effective Interventions to Address Health Literacy, Communication and Language Assistance, and Cultural Competence

There is a growing body of evidence demonstrating effective interventions for addressing health literacy, communication and language access, and cultural competence, as well as patient-centered care. The evidence shows several common themes across these concepts. Below, we summarize the evidence for successful interventions that address health literacy, communication and language assistance, cultural competence, and patient-centered care, respectively. Following this brief review of the evidence, we identify common domains across these concepts.

Health Literacy

Health care organizations can bridge literacy barriers for individual patients by determining patients’ ideal learning styles during intake assessments and by providing materials in a variety of media targeted to the patient’s proficiency. Although methods exist for assessing individual patients’ health literacy,³² given the high proportion of the population that experiences health literacy challenges, more universal approaches are recommended.¹⁷ The Agency for Healthcare Research and Quality (AHRQ) published the second edition of its Health Literacy Universal Precautions Toolkit, which offers a variety of evidence-based tools to help health care organizations communicate clearly.¹⁷ The tools include the Teach-Back Method; various approaches to encouraging patients to ask questions, including Ask Me 3; and a variety of tools to help organizations communicate in plain, non-technical language. In its Preferred Practices for Measuring and Reporting Cultural Competency, the National Quality Forum (NQF) recommends using the Teach-Back Method to improve communication between providers and patients.³³ Health care organizations can provide information in plain language with clear communication in the

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³² Agency for Healthcare Research and Quality. (2016, February). Health Literacy Measurement Tools (Revised). Retrieved from https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy/index.html (accessed February 21, 2018).

³³ National Quality Forum. (2009). A Comprehensive Framework and Preferred Practices for Measuring and Reporting Cultural Competency: A Consensus Report. Washington, DC: National Quality Forum.

patient’s target language. Research shows that using interactive methods such as Ask Me 3 and Teach-Back improve patients’ understanding and adherence to treatment recommendations^32,34 and that use of community health workers (CHWs) improves patients’ understanding of their disease and results in improved self-management and better outcomes.³⁵

Communication and Language Assistance

A key component to achieving health literacy and reducing health disparities is to ensure that patients can communicate with medical personnel and obtain information about their conditions in their preferred language. Research shows that providing information in writing is associated with improved care, and that, like the health literacy intervention, visual aids were associated with better patient adherence among people with LEP.³⁶ Studies show improved adherence among non-English-speaking patients when information was provided in the patient’s preferred language. The use of trained interpreters was found to result in improved diagnoses.³⁷ Interventions involving CHWs have also been demonstrated to improve outcomes among diabetic patients with language barriers.³⁸ English-speaking patients with functional disabilities such as blindness or deafness may face additional barriers in communication. Individuals with disabilities may require auxiliary aids, such as assistive listening devices, video interpretive services, or braille transcription services, to enable patients to fully participate in their health care.³⁹

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³⁴ Cincinnati Children’s Hospital Medical Center. (2011). Best Evidence Statement (BESt). Communication of Health Care Information to Patients and Caregivers Using Multiple Means. Cincinnati, OH: Cincinnati Children’s Hospital Medical Center.

³⁵ Centers for Disease Control and Prevention. (2014, September). Policy Evidence Assessment Report: Community Health Worker Policy Components. Retrieved from https://www.cdc.gov/dhdsp/pubs/docs/chw_evidence_assessment_report.pdf (accessed February 21, 2018).

³⁶ Schillinger, D., Machtinger, E., Wang, F., Chen, L-L., Win, K., Palacios, J., Rodriguez, M., and Bindman, A. (2005, February). Language, Literacy, and Communication Regarding Medication in an Anticoagulation Clinic: Are Pictures Better Than Words? Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK20494/pdf/Bookshelf_NBK20494.pdf (accessed February 21, 2018).

³⁷ Bauer, A., and Alegría, M. (2010). Impact of patient language proficiency and interpreter service use on the quality of psychiatric care: A systematic review. Psychiatric Services, 61(8), 765–773.

³⁸ Pottie, K., Hadi, A., Chen, J., Welch, V., and Hawthorne, K. (2013, September). Realist review to understand the efficacy of culturally appropriate diabetes education programmes. Diabetic Medicine, 30(9), 1017–1025.

³⁹ National Quality Forum. (2017). Effective Interventions in Reducing Disparities in Healthcare and Health Outcomes in Selected Conditions. Final Report. Washington, DC: National Quality Forum.

Cultural Competence

Efforts to improve the overall cultural competence of a health care organization and its staff members require substantial engagement between the organization and the community. Community needs assessments and work with CHWs can help organizations understand the demographic and cultural profile of their communities and better deliver culturally tailored and patient-centered care.

Chin and colleagues described promising interventions to improve cultural competence and reduce disparities.⁴⁰ The authors recommend culturally tailored, multi-disciplinary, team-based interventions that address patients at multiple points in their interaction with the health care system. They further recommend interactive patient education approaches and family and community engagement in patient navigation efforts. NQF recently summarized the common practices found to be effective in reducing disparities. These include an organizational commitment to disparity reduction and the promotion of health equity; collaboration across sectors (public health and health care) to reduce disparities at all key points; collection and analysis of data to identify disparities; implementation of quality improvement activities focused on disparity reduction; engagement with the community and patients in developing interventions; and implementation of culturally tailored, person- and family-centered, multi-disciplinary, coordinated care.³⁹ In particular, the authors suggest the value of CHWs in helping organizations provide culturally and linguistically tailored health education and support.

CHWs serve as key members of the health care team and as members of the community can help make care more culturally sensitive.^35,41 Research shows that, across a variety of specific CHW interventions and applications, health care outcomes were improved. In addition to their roles in providing patient information and supporting patient self-management for chronic conditions, CHWs can offer valuable insight to health care organizations about the values and concerns that may be common in a community or population subgroup. Chin and colleagues and NQF identify community engagement as a success factor in developing targeted interventions that are acceptable to a community and account for the community context.^39,40 Deeper understanding and appreciation for cultural practices within the

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⁴⁰ Chin, M. H., Clarke, A. R., Nocon, R. S., Casey, A. A., Goddu, A. P., Keesecker, N. M., and Cook, S. C. (2012). A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care. Journal of General Internal Medicine, 27(8), 992–1000.

⁴¹ Centers for Disease Control and Prevention. (2015, April). Addressing Chronic Disease through Community Health Workers: A Policy and Systems-Level Approach: A Policy Brief on Community Health Workers. Retrieved from https://www.cdc.gov/dhdsp/docs/chw_brief.pdf (accessed February 21, 2018).

community will allow the organization to be increasingly responsive and innovative when establishing policies. For example, temporarily modifying the timing of hospital events to respect religious and cultural holidays or designing patient support groups that provide tailored education that reflects different cultural norms may help all persons receive culturally appropriate health care.

Patient-Centered Care

While the IOM identified patient-centered care as one of six quality aims, there is evidence that patient-centered care also impacts other aspects of quality, including patient experience, effectiveness, and safety.⁴² Various aspects of patient-centered care, including the patient–physician relationship, patient engagement in decision making, and support for patient self-management, are each associated with improved quality. Street and colleagues suggest a variety of pathways through which physician–patient communication might affect health outcomes, with some direct (e.g., reduction of anxiety) and others indirect (e.g., trust leading to improved adherence to medication regimen).⁴³ In 2007, the major primary care associations issued the Joint Principles of the Patient-Centered Medical Home,⁴⁴ and several national accrediting organizations subsequently launched accreditation programs for PCMHs.⁴⁵ The PCMH’s Impact on Cost and Quality shows consistent reductions in utilization and cost, specifically in unnecessary utilization, among PCMHs.⁴⁶ While the Patient-Centered Primary Care Collaborative report focuses on cost and outcome measures, it also reports quality results and where these were included in the reviewed studies. Six

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⁴² Scholle, S. H., Torda, P., Peikes, D., Han, E., and Genevro, J. (2010, June). Engaging Patients and Families in the Medical Home. (Prepared by Mathematica Policy Research under Contract No. HHSA290200900019I TO2.) AHRQ Publication No. 10-0083-EF. Rockville, MD: Agency for Healthcare Research and Quality.

⁴³ Street, J. L., Makoul, G., Arora, N. K., and Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling, 74(3), 295–301.

⁴⁴ American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, and American Osteopathic Association. (2007, March). Joint Principles of the Patient-Centered Medical Home. Retrieved from http://www.aafp.org/dam/AAFP/documents/practice_management/pcmh/initiatives/PCMHJoint.pdf (accessed February 21, 2018).

⁴⁵ Patient-Centered Primary Care Collaborative. (n.d.). The Medical Home: History: Major Milestones for Primary Care and the Medical Home. Retrieved from https://www.pcpcc.org/content/history-0 (accessed February 21, 2018).

⁴⁶ Nielsen, M., Buelt, L., Patel, K., and Nichols. L. (2016, February). The Patient-Centered Medical Home’s Impact on Cost and Quality Annual Review of Evidence 2014-2015. Retrieved from https://www.pcpcc.org/sites/default/files/resources/The%20Patient-Centered%20Medical%20Home%27s%20Impact%20on%20Cost%20and%20Quality%2C%20Annual%20Review%20of%20Evidence%2C%202014-2015.pdf (accessed February 21, 2018).

of seven peer-reviewed studies showed improved clinical quality on one or more measures, while one study showed mixed results.

Summary of Evidence

Key evidence shows some common elements of effective interventions to improve patient understanding and engagement in health care and to improve the quality of care delivered and outcomes attained. Organizations can implement evidence-based practices to communicate clearly and in plain language, whether in person, over the telephone, or in written materials and other media, to increase patients’ understanding and engagement in their care. Engagement of the community, including CHWs, can support this effort in a variety of ways.

3.2 Integrated, Patient-Centered Framework Based on Common Domains

To develop an integrated framework for measurement, we considered the evidence, as well as standards or other authoritative guidelines for providing care designed to address the concepts of health literacy, communication and language access, and cultural competence, and we added the concept of patient-centered care. This framework illustrates how these concepts share common domains. For many of these concepts, we refer to the National CLAS Standards. The provision of CLAS has been identified as an important approach to addressing health care disparities based on race, ethnicity, culture, language needs, health literacy, and communication needs.² Both the original and the enhanced National CLAS Standards provide an organizing framework in which health care providers and organizations may provide care and services to meet the needs of diverse populations. Below, we present standards, activities, expectations, or guidelines for each concept. These standards, promulgated by authoritative sources, and the evidence-based interventions identified previously, are well aligned across a common set of domains. Exhibit 2 displays this alignment.

We group the activities/expectations across the concepts of health literacy, communication and language assistance, cultural competence, and patient-centered care into seven contextually relevant domains:

1. Organization culture and values
2. Accountability and quality improvement (QI)
3. Workforce skills
4. Assessment
5. Community engagement
6. Communication
7. Patient engagement

It may be possible to group the activities or expectations in alternative ways. However, for discussion, we describe the following domains and subdomains.

Organization Culture and Values

The enhanced National CLAS Standards added a standard to the original set and expanded the scope of two other standards to emphasize the important role of governance and leadership in promoting “effective, equitable, understandable, and respectful quality care and services” (National CLAS Standard #2).²⁸ This construct integrates the role of organizational culture in making health care services culturally sensitive and understandable to people with LEP and people with low health literacy. The PCMH similarly identifies physician leadership of the care team as a central feature of the model,⁴⁴ whose purpose is to “foster an environment of trust and respect.”⁴⁷ In both cases, the function of leadership is highlighted in creating a culture of respect and inclusion. Additional expectations for organizational culture and leadership include making the health care system more proactive in removing health literacy barriers and implementing incentives to promote good communication practices⁴⁸ and to implement patient-centered care principles.⁴⁷

QI

National CLAS Standards,²⁸ the IOM’s Health Literacy: A Prescription to End Confusion,¹³ the Centers for Disease Control and Prevention’s (CDC’s) training materials on health literacy,⁴⁹ and the Joint Principles of the Patient-Centered Medical Home⁴⁴ all highlight the importance of quality measurement, quality improvement, and accountability in implementing and continually improving the effectiveness of health literacy, cultural competence, communication and language assistance, and patient-centered care. National CLAS Standard #10 is Conduct Organizational Assess-

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⁴⁷ Scholle, S. H., Torda, P., Peikes, D., Han, E., and Genevro, J. (2010, June). Engaging Patients and Families in the Medical Home. Retrieved from https://pcmh.ahrq.gov/sites/default/files/attachments/Engaging%20Patients%20and%20Families%20in%20the%20Medical%20Home.pdf (accessed February 21, 2018).

⁴⁸ U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2010). National Action Plan to Improve Health Literacy. Retrieved from https://health.gov/communication/HLActionPlan/pdf/Health_Literacy_Action_Plan.pdf (accessed February 21, 2018).

⁴⁹ Centers for Disease Control and Prevention. (n.d.). Welcome to Heath Literacy for Public Health Professionals. Retrieved from https://www.cdc.gov/healthliteracy/training/index.html (accessed February 21, 2018).

ments to assess progress in implementing the CLAS standards. Ongoing assessment of efforts to improve health equity and reduce disparities is key to providing continuous process improvement and focusing resources on proven outcomes. Some of the activities suggested include developing plans, policies, goals, and management accountability for CLAS; collection of data (patient and community demographics, quality performance); stratification of quality measures by demographic group; and organizational self-assessment of capacity to provide CLAS and progress on CLAS activities. In addition to assessment, accountability/QI includes continuous improvement activity, public reporting, and seeking third-party external recognition. When organizations take time to gather robust baseline information about their populations, capabilities, and processes, ongoing data regarding performance and outcomes may be collected for future analysis and quality improvement.

Workforce Skills

Preparedness of the workforce through recruitment and training has been highlighted as an important domain across all these concepts. Subdomains include

• Diverse workforce
• Training and workforce skills

Diverse workforce The National CLAS Standards, echoed by the HHS Office of Inspector General, specify that recruitment of a diverse workforce at all levels of the organization is valuable for providing culturally and linguistically sensitive care and services.^28,50 The National CLAS Standards present the rationale for a diverse workforce that includes creating a welcoming environment for culturally diverse individuals (staff and patients); engaging with the community; providing diverse perspectives into the CLAS program and other decision making; and expanding staff knowledge and experience. The Maryland Department of Health and Mental Hygiene’s Office of Minority Health and Health Disparities additionally notes the value of CHWs in extending an organization’s capacity for CLAS.⁵¹

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⁵⁰ U.S. Department of Health and Human Services, Office of Inspector General. (2010, July). Guidance and Standards on Language Access Services: Medicare Providers. Retrieved from https://oig.hhs.gov/oei/reports/oei-05-10-00050.pdf (accessed February 21, 2018).

⁵¹ Maryland Department of Health and Mental Hygiene, Office of Minority Health and Health Disparities. (2015, June). CLAS Standards Training Toolkit: Facilitators’ Guide for Outreach Workers. Retrieved from http://dhmh.maryland.gov/mhhd/Documents/Toolkit_for_Outreach_Workers.pdf (accessed February 21, 2018).

Training and workforce skills Hiring a diverse workforce is valuable, but not sufficient, for delivering culturally and linguistically appropriate services. Ongoing training and skill development are recognized across concepts as important strategies to ensure staff understand the expectations for performance and have the skills to deliver culturally and linguistically sensitive care and services (National CLAS Standard #4).²⁸ Epstein and Street, in a 2011 editorial in the Annals of Family Medicine, argue that training is required to shift the physician’s traditionally authoritative role to a more collaborative and empathic role that invites patient engagement.³⁰ The skills needed for this role change have much in common with the skills needed to engage a diverse patient population in its health care.

Assessment

Needs assessment is at the core of providing individualized care and services. Numerous authorities identify assessment as a critical component of providing services that are understandable and tailored to the needs, culture, and language of the patient.^11,13,28,49 Assessments can inform service and resource planning at the organizational level, as well as for tailoring individual care plans. The National CLAS Standards also recommend conducting organizational assessments; however, because this activity is linked to quality improvement, we have addressed that requirement in the Accountability and Quality Improvement domain. Subdomains of assessment include

• individual, and
• community.

Individual assessment The National CLAS Standards (National CLAS Standard #11)²⁸ and CDC¹¹ recommend collecting demographic data such as race, ethnicity, and language to identify individual needs, better tailor services, and evaluate care outcomes and utilization patterns. The IOM recommends a health literacy assessment.¹³ Capturing information about individual patient needs, cultural context, and language allows the organization to provide responsive services to the individual and to monitor the quality and effectiveness of services provided. Epstein and Street posit that assessment of the patient’s values, preferences, and beliefs is important to developing shared understanding and improving the quality of health care decisions.⁴³

Community assessment National CLAS Standard #12²⁸ proposes conducting regular assessments of community health assets and needs for planning services that address the diversity of the population. This proposition is

echoed by the Office of Inspector General,⁵⁰ and CDC similarly recommends assessing the literacy level of the audience to better design and tailor communications.⁴⁹

Community Engagement

National CLAS Standard #13²⁸ suggests engaging the community to help develop, implement, and evaluate CLAS policies, practices, and services. CDC similarly recommends involving representatives from the community in developing and evaluating health information and to promote interest in health literacy.⁴⁹ The HHS’s Office of Disease Prevention and Health Promotion (ODPHP) likewise recommends engaging the community in the development and provision of culturally and linguistically appropriate health education and information services.⁴⁸ Epstein and Street suggest that patient-centered care practices engage patients, families, and other stakeholders in developing measures to evaluate patient-centered care to ensure such measures reflect what matters to the community.³⁰

Communication

The Institute for Healthcare Communication presents evidence of the impact of communication in the health care setting.⁵² It describes studies that tie communication effectiveness to diagnostic accuracy, patient adherence to treatment, patient safety, and patient and team satisfaction. Patient-centered care principles and shared decision making depend on effective and supportive communication.⁴⁴ The National CLAS Standards identify communication as key to avoiding malpractice, and the provision of CLAS is key to effective communication and reduction of disparities.²⁸ Subdomains include

• materials, and
• oral communication.

Materials The IOM recommends presenting health information in various forms and media and in clear, everyday language.¹³ ODPHP recommends using plain language, making written information look easy to read, supplementing written information with pictures, and ensuring that materials reflect the cultural context, language, and language skills of the

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⁵² Institute for Healthcare Communication. (2011, July). Impact of Communication in Healthcare. Retrieved from http://healthcarecomm.org/about-us/impact-of-communication-in-healthcare (accessed February 21, 2018).

intended users.^11,53 National CLAS Standards #6 and #8 recommend providing written notice of the availability of language services and providing easy-to-understand print and multimedia materials and signage in people’s preferred language or the languages commonly used in the community.²⁸ CDC suggests using culturally and linguistically appropriate messages,⁴⁹ and the Joint Commission recommends providing patient education materials that “meet patient needs.”⁵⁴

Oral communication The IOM and ODPHP recommend using everyday language and avoiding jargon,^11,13,53 and ODPHP and Epstein and Street recommend using interactive methods to directly engage patients.^11,30,53 National CLAS Standard #5 suggests offering both language assistance services to people with LEP and other communication supports at no cost to the individual.²⁸ The National CLAS Standards also recommend making verbal offers of language assistance, in addition to written offers. CLAS Standard #1 suggests providing understandable care and services that are culturally responsive in people’s preferred languages and with any communication assistance required.²⁸

Patient Engagement

The IOM identifies several approaches to engaging patients. These include providing time for discussions between patients and providers and helping patients to feel comfortable asking questions within a therapeutic relationship.¹³ National CLAS Standard #1, while overarching, also points to engaging patients, and Standards #5 and #7 address the provision of language services and ensuring the competency of language service providers as a vehicle to promote and enhance patient engagement.²⁸ The Joint Commission recommends that health care organizations “accommodate patient cultural, religious, or spiritual beliefs and practices.”⁵⁴ The Maryland Department of Health and Mental Hygiene’s Office of Minority Health and Health Disparities recommends using collaborative care and shared decision making.⁵¹ Epstein and Street recommend that physicians display specific behaviors to ensure patients are engaged in their care,³⁰ and the Joint Principles of the Patient-Centered Medical Home also identifies

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⁵³ U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (n.d.). Improve the Usability of Health Information. Retrieved from https://health.gov/communication/literacy/quickguide/healthinfo.htm (accessed February 21, 2018).

⁵⁴ The Joint Commission. (2010). Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. Retrieved from http://www.jointcommission.org/assets/1/6/ARoadmapforHospitalsfinalversion727.pdf (accessed February 21, 2018).

patient involvement in decision making as a core principle of the PCMH model.⁴⁴

4.0 OPPORTUNITIES FOR MEASUREMENT

In this section, we identify measurement opportunities based on the framework identified above. First, we review the landscape of existing measures for structure, process, and outcome. Second, we suggest streamlined and innovative approaches to take advantage of existing measures and push for future efforts to fill in the gaps.

4.1 Existing Measures Address Health Literacy, Communication and Language Assistance, and Cultural Competence

Health care quality measures can assess structures, processes, and outcomes.⁵⁵ “Structure” refers to the infrastructure and capability of health care organizations (such as workforce and health information technology). Process measures evaluate the provision of evidence-based or recommended services. Outcomes are the end points and effect of care and can include care experiences and health outcomes, such as disease control or mortality, and can be measured for individuals or a population.

A recent scan of existing measures found a limited number of measures addressing health literacy, communication and language assistance, and cultural competence⁵⁶ and even more limited use of these tools in accountability efforts. In this section, we highlight how these existing measures relate to the proposed framework.

Structure Measures

Several kinds of structure measures are available for assessing structures of care, including organizational surveys, accreditation standards, and program requirements (see Exhibit 3 in Appendix D).

Surveys Two surveys, both endorsed by NQF, address all the domains from our integrated, patient-centered framework, but one focuses primarily on culture and language. The RAND Cultural Competency Implementation

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⁵⁵ Donabedian, A. (2005). Evaluating the Quality of Medical Care. The Milbank Quarterly, 83(4), 691–729.

⁵⁶ Ng, J., Tirodkar, M., Briefer French, J., Spalt, H., Ward, L., Haffer, S. C., Hewitt, N., Rey, D., and Hudson Scholle, S. (2017). Health quality measures addressing disparities in culturally and linguistically appropriate services: What are current gaps? Journal of Health Care for the Poor and Underserved. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/28804074 (accessed February 21, 2018).

Measure⁵⁷ is an organizational survey designed for Web-based administration. This survey was based on a priority subset of NQF’s cultural competency preferred practices, and most of the items are framed in relation to disparities or cultural competence (e.g., “Provided staff with time and resources for training programs and practices that promote culturally competent care.”) In contrast, the Communication Climate Assessment Toolkit (C-CAT) addresses a range of communication issues, including health literacy, culture, language access, and other communication barriers.⁵⁸ Originally developed by the American Medical Association Ethical Force program and now stewarded by the University of Colorado, this toolkit includes surveys for clinicians/staff, as well as patients, and the measures for each composite are calculated from both sets of responses. We could not locate information on the use of either measure in accountability programs.

Accreditation programs Existing accreditation standards for health care organizations also address the topics and domains of our proposed framework. A previous review of accreditation standards found that accreditation programs often have opportunities for organizations to demonstrate attention to health literacy, communication and language assistance, and cultural competence.⁵⁶ However, organizations can often achieve accreditation without meeting specific program elements related to our framework, such as the collection of race/ethnicity data.

Hospitals. The Joint Commission’s accreditation program for hospitals addresses several elements of the framework, primarily around data collection and addressing communication needs. The program specifically addresses communication barriers, language needs, and culture. While there are standards that address the domains of organization culture, accountability and QI, and workforce, they do not specifically address their application to health literacy, communication and language assistance, or cultural competence concepts.

Health plans. The National Committee for Quality Assurance’s (NCQA’s) health plan accreditation⁵⁹ includes some attention to language needs,

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⁵⁷ National Quality Forum. (2012, August 10). NQF Endorses Healthcare Disparities and Cultural Competency Measures. Retrieved from http://www.qualityforum.org/News_And_Resources/Press_Releases/2012/NQF_Endorses_Healthcare_Disparities_and_Cultural_Competency_Measures.aspx (accessed February 21, 2018).

⁵⁸ University of Colorado, Center for Bioethics and Humanities (n.d.). About C-CAT. Retrieved from http://www.ucdenver.edu/academics/colleges/medicalschool/centers/BioethicsHumanities/C-CAT/Pages/About-C-CAT.aspx (accessed February 21, 2018).

⁵⁹ National Committee for Quality Assurance. (2017). Patient-Centered Medical Home (PCMH) Recognition. Retrieved from http://www.ncqa.org/Programs/Recognition/Practices/PatientCenteredMedicalHomePCMH.aspx (accessed February 21, 2018).

health literacy, and other communication needs, primarily related to health plan operations, care management, and network adequacy. NCQA also has a Multicultural Health Care Distinction program⁶⁰ that was developed in 2010 to align with HHS’s Office of Minority Health (OMH) CLAS standards. This distinction program adds emphasis on culture, language, and disparities with requirements for data collection on race/ethnicity and language, increased expectations for language services, and requirements for quality improvement efforts related to reducing disparities or increasing cultural competence. This program has not been revised since OMH’s publication of the revised national CLAS standards in 2013. Uptake of this specialized program is quite limited; of the more than 1,200 health plans that currently have NCQA’s Health Plan Accreditation, only 27 have NCQA’s additional Distinction in Multicultural Health Care.⁶¹

Primary care practices. NCQA’s PCMH recognition program for primary care practices includes expectations related to addressing health literacy, communication and language assistance, and cultural competence, and the standards address all domains of the integrated framework. Like other accreditation programs, practices are not required to meet all elements for recognition. Data from the practices recognized under the 2014 standards show that most practices met expectations for documentation of race/ethnicity and language needs, though only about 40 percent document health literacy assessments. Nearly all have mechanisms for referring to community resources. However, only 40 percent assess the usefulness of community resources. About half of the recognized practices (52 percent) conduct QI efforts focused on vulnerable populations.⁶²

The recently released 2017 version of the PCMH standards⁵⁹ increases expectations relevant to our proposed framework. New expectations specifically call out building a “health-literate” practice with training and demonstration of communication processes like teach-back methods; educating staff on how to interact with people of different cultures or language needs; and addressing potential disparities based on these and other patient characteristics. Still, few of these items are core or required elements; instead, practices have a choice in how to achieve the required number of credits for recognition.

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⁶⁰ National Committee for Quality Assurance. (2010). Multicultural Health Care Distinction. Retrieved from http://www.ncqa.org/programs/other-programs/multicultural-health-care-distinction (accessed April 24, 2017).

⁶¹ National Committee for Quality Assurance. (2017). Multicultural Health Care Distinction Report Card. Retrieved from http://www.ncqa.org/report-cards/other-healthcare-organizations/multicultural-health-care-distinction (accessed April 24, 2017).

⁶² Christensen, K., Tirodkar, M., and Hudson Scholle, S. (2017). Addressing Social Risk in the PCMH: A Review of Current Practice. Manuscript in preparation.

Program standards Another example of program standards addressing our integrated, patient-centered framework comes from MIPS recently introduced for Medicare clinicians.⁶³ Payments to clinicians will be determined in part based on their performance in four areas: quality, costs, clinical practice improvement activities, and advancing care information (meaningful use of electronic health records). Most participants will be required to attest that they completed up to four improvement activities for a minimum of 90 days, and this will count toward 15 percent of the performance score. Of the 92 activities listed, 4 improvement activities are specifically labeled under the category “advancing health equity”:

1. Engagement of new Medicaid patients and follow-up
2. Leveraging a Qualified Clinical Data Registry (QCDR) for use of standard questionnaires [for disparity reduction]
3. Leveraging a QCDR to promote use of patient-reported outcome tools
4. Leveraging a QCDR to standardize processes for screening

Other activities included in categories of population management and beneficiary engagement align well with the integrated, patient-centered framework (see Exhibit 3 in Appendix D). Several activities are related to topics extraneous to this framework but could be used as models or adapted to address health literacy, communication and language assistance, and cultural competence. For example, current improvement activities that relate to staff training (Improvement Activity_Patient Safety and Practice Assessment_3 [IA_PSPA_3]: Participate in Institute for Healthcare Improvement [IHI] Training/Forum Event; National Academy of Medicine, AHRQ Team Strategies and Tools to Enhance Performance and Patient Safety [TeamSTEPPS^®]; or other similar activities) or assessment of organizational safety culture (IA_PSPA_4: Administration of the AHRQ Survey of Patient Safety Culture) could be adapted to training in health literacy, communication and language assistance, and cultural competence.

Process Measures

Only a handful of measures are available to evaluate the process of care delivery related to our integrated, patient-centered framework and concepts (see Exhibit 4 in Appendix D). Most of these measures address communication and language assistance and focus on specific health care

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⁶³ U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. (2017). Quality Payment Programs, Improvement Activities. Retrieved from https://qpp.cms.gov/measures/ia (accessed February 21, 2018).

settings. Only one of these measures is used in accountability programs; Medicare health plans and prescription drug plans are evaluated on the availability of communication services for members calling the health plan. A suite of measures developed for assessing the use of language services in hospitals does exist, though the NQF endorsement has lapsed. The Institute for Clinical Systems Improvement has published a measure targeting the use of teach-back methods for quality improvement purposes.

Outcomes

A previous review⁵⁶ identified several survey tools available for assessing patient experience with communication, including a special focus on interpreters and cultural competence. However, we found that the only items used in accountability programs are a composite measure assessing communication about medications from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Health Literacy item set.⁶⁴ This composite is used in CAHPS surveys for hospitals, accountable care organizations, and other facilities; it is also in the CAHPS survey as a measure reporting option for MIPS for Medicare providers.

Validated items in the CAHPS family of measures address a broad range of topics related to cultural competence, including interpreter services, health literacy, and PCMH (see Exhibit 5 in Appendix D). Each of these item sets was developed separately using different conceptual frameworks. Eight items addressing communication are common to the health literacy and cultural competence item sets. The cultural competence set includes additional items that address trust, experiences of discrimination, interpreters, and complementary and alternative medicine, while the health literacy set has items related to topics such as test results, filling out forms, and self-management support (Exhibit 6 in Appendix D provides examples of these items).

4.2 Recommendations and Next Steps

Despite the existence of relevant measures addressing the concepts of health literacy, communication and language assistance, and cultural competence, the uptake of these measures in existing programs and accountability efforts has been limited. We recommend four strategies for using an integrated, patient-centered framework, and offer recommendations

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⁶⁴ U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality. (2016, April). Supplemental Items for the CAHPS Clinician & Group Survey. Retrieved from https://www.ahrq.gov/cahps/surveys-guidance/item-sets/cg/index.html (accessed February 21, 2018).

to guide broader implementation and evaluation of these critical aspects of care:

1. Use structure measures to build capacity and demonstrate capability to serve diverse population needs.
2. Develop streamlined tools and new techniques to gather patient experiences.
3. Stratify existing quality measures to target improvement and equity.
4. Develop packages of measures for vulnerable subpopulations.

Use Structure Measures to Build Capacity and Demonstrate Capability to Serve Diverse Population Needs

All of the domains of the integrated framework can be evaluated using structure measures, and these structures are foundational. An adequate health information infrastructure is needed to support the assessment and tracking of patient needs, care activities, and QI. A trained and diverse workforce is critical for delivering evidence-based practices, such as teach-back, as well as bridging across communities of different cultures. In fact, structure measures are likely the only feasible way to encourage the implementation of some domains of the framework, such as organizational culture and community engagement. The ability to provide adequate communication and language supports should be a universal expectation, regardless of the population served.

Existing structure measures vary in the degree to which they support the full range of the integrated framework, but there are good options for immediate implementation. Several existing measures address key structures related to the seven common domains, or important outcomes. The Communication Climate Assessment Tool offers an integrated approach for surveying clinicians and staff about these concerns and maps well to the integrated, patient-centered framework. While this tool is primarily intended for internal quality improvement efforts, it could be a useful method for assessing the implementation of the framework. NCQA’s 2017 PCMH program illustrates how the integrated, patient-centered framework could be implemented in standards—in some cases, the concepts of health literacy, communication and language assistance, and cultural competence are called out as separate elements (e.g., training and staff preparation, data collection), and in others, they are considered in tandem (as in care management and self-care). Both the RAND Cultural Competence Assessment tool and NCQA’s Multicultural Health Care Program have narrower framing that would need to be expanded to address a broader definition of cultural and communication needs.

Adoption of the specific structure measures, including the health equity improvement activities included in MIPS, or adaptation of other specific

structure measures to health equity–related concepts, is one pathway to the implementation of relevant structure measures. The challenge in this approach is that the selection of these specific measures and improvement activities is voluntary, and health care providers and organizations are more likely to select measures that apply to a large segment of the population served and are well aligned with payer requirements. These measures already exist, and history has shown they have little traction.

A second pathway is the implementation of patient-centered care models. MIPS offers full credit for improvement activities to practices recognized as PCMHs. Patient-centered care is highly aligned with multiple payer priorities. Expressed as “patient and family engagement,” it is one of six priorities articulated in the National Quality Strategy.⁶⁵ Nearly half of all states (22) require PCMH certification for participation in certain incentive programs, including federally run initiatives, such as Comprehensive Primary Care Plus, State Innovation Models, health homes, and Delivery System Reform Incentive Payment Programs.⁶⁶ The uptake of patient-centered care principles is reflected by the growth of NCQA’s PCMH Recognition program, which recognizes 12,000 practices covering 60,000 clinicians.⁵⁹

This attention to patient-centered care creates an opportunity. As discussed, PCMHs are highly aligned with the concepts of health literacy, communication and language assistance, and cultural competence. While there is limited appetite among providers and health care systems to implement new measures or to adopt measures that address a relatively narrow segment of the population served, there is growing interest, spurred by federal, state, and private payer incentives, in patient-centered care models. This interest can be leveraged to drive attention to the domains common across these other concepts.

Develop Streamlined Tools and New Techniques to Gather Patient Experiences

While structure measures lay the foundation for integrated, patient-centered care, patients and families are the authorities on whether care

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⁶⁵ U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. (2016). CMS Quality Strategy. Retrieved from https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/Downloads/CMS-Quality-Strategy.pdf (accessed February 21, 2018).

⁶⁶ National Committee on Quality Assurance. (n.d.). Payer Support (Federal, State, and Commercial): The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA). Retrieved from http://www.ncqa.org/programs/recognition/practices/patient-centered-medicalhome-pcmh/why-pcmh/payer-and-medical-board-support/payer-support-federal-state-andcommercial (accessed February 28, 2018).

achieves these goals of patient-centered, culturally responsive, understandable care. The survey tools for assessing these topics do exist but have not gained traction. Current approaches for collecting patient experience data use broad-based tools, target a representative sample of the population, and rely on inexpensive methods of mailed surveys (sometimes with telephone follow-up). These methods mean that specific needs, such as communication and language support, are either not captured or an insufficient number of individuals with such needs are sampled.

While survey response rates are declining across the general population, this may be a particularly acute problem for language and culture, because cultural and language barriers could contribute to even lower participation among these groups. Existing items addressing evidence-based communication methods, language support, discrimination, and trust could provide critical information for guiding quality improvement and supporting accountability. Efforts are needed to streamline these tools to identify a limited suite of items that target specific, actionable concepts in patient-centered care and to guide improvement efforts needed to engage and support patients in being active participants in their health and health care.

More importantly, however, alternative approaches for capturing the experiences of targeted subgroups are needed. This may require fielding special surveys of vulnerable groups or identifying other modes for data collection, including electronic data collection or surveys conducted in collaboration with community organizations. While validated surveys are a critical tool, other mechanisms to obtain feedback may also be needed, particularly when language, communication, and other barriers exist.

Stratify Existing Quality Measures to Target Improvement and Equity

The ultimate goal of an integrated, patient-centered framework is to achieve equity in health care and outcomes across populations with diverse needs. We recommend stratifying existing clinical process and outcome measures by various social risk factors to assess the presence and magnitude of disparities and to monitor changes over time. Stratified reporting of quality results on existing measures reported by health plans, hospitals, and other provider organizations and facilities is a powerful way to identify and target opportunities for improvement. Implementing stratified data reporting requires substantial effort. Minnesota Community Measurement first published an equity report on health care outcomes in 2015, 7 years after it began efforts to increase documentation of race, ethnicity, language,

and country of origin.⁶⁷ Prior to public reporting, organizations were able to see their private results and compare them to others so that they could understand and build improvement efforts to address these findings. The equity report documents disparities in quality on five outcome measures for adults across medical groups in Minnesota; it also highlights which clinics serve higher proportions of vulnerable populations. Similar efforts to publish data on health care equity are under way in California.^68,69 During the past year, CMS released three reports on disparities in Medicare Advantage health plans using data on quality and patient experiences.⁷⁰ Although several helpful and detailed toolkits exist for the collection of race, ethnicity, and language data, and although collection of these data has been encouraged for many years, the data are substantially incomplete.^71,72

Incomplete information on social risks limits opportunities for stratified reporting. Ng and colleagues recently showed that most health plans—commercial, Medicaid, and Medicare—lacked complete data on race, ethnicity, and language needs of their members.⁷³ For the Medicare Advantage reports, CMS used statistical methods to attribute race and ethnicity where data were incomplete using other Medicare and U.S. Census data. As noted above, Minnesota undertook special efforts to gain complete data for its report. Systematic efforts to collect data on these and other factors are required to assess equity of care. Even once data on social risk factors

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⁶⁷ MN Community Measurement. (2017, February 2). 2016 Health Equity of Care Report: Stratification of Health Care Performance Results in Minnesota by Race, Hispanic Ethnicity, Preferred Language and Country of Origin. Retrieved from http://mncm.org/wp-content/uploads/2017/02/2016-Health-Equity-of-Care-Report-2.2.2017.pdf (accessed February 21, 2018).

⁶⁸ California Department of Public Health. (2016). Let’s Get Healthy California. Retrieved from https://letsgethealthy.ca.gov (accessed February 21, 2018).

⁶⁹ California Department of Health Care Services, Managed Care Quality and Monitoring Division. (2017). The Managed Care Performance Dashboard. Retrieved from http://www.dhcs.ca.gov/services/Pages/MngdCarePerformDashboard.aspx (accessed February 21, 2018).

⁷⁰ U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, Office of Minority Health, and RAND Corporation. (2017, April). Racial and Ethnic Disparities by Gender in Health Care in Medicare Advantage. Retrieved from https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/Health-Disparities-Racial-and-Ethnic-Disparities-by-Gender-National-Report.pdf (accessed February 21, 2018).

⁷¹ Hasnain-Wynia, R., Pierce, D., Haque, A., Hedges Greising, C., Prince, V., and Reiter, J. (2007). Health Research and Educational Trust Disparities Toolkit. Retrieved from hretdisparities.org (accessed February 21, 2018).

⁷² MN Community Measurement. (2010). Handbook on the Collection of Race/Ethnicity/Language Data in Medical Groups. Retrieved from http://mncm.org/wp-content/uploads/2013/04/Handbook_on_the_Collection_with_Addendum_10.21.10.pdf (accessed February 21, 2018).

⁷³ Ng, J. H., Ye, F., Ward, L. M., Haffer S. C., and Scholle, S. H. (2017). Data on race, ethnicity, and language largely incomplete for managed care plan members. Health Affairs, 36(3):548–552.

are complete, there are additional methodological challenges to address related to the sampling of small population segments. Questions remain about the relevance of collecting specific information on health literacy, given estimates that the vast majority of patients experience health literacy challenges.

Develop Packages of Measures for Vulnerable Subpopulations

Given the increasing demands of measurement, focusing on vulnerable subpopulations may require special incentives or warrant special rewards. One way for providers and organizations to demonstrate their capabilities and skills in serving a vulnerable group would be to report on a package of structure, process, and patient experience tailored to the group’s needs. For example, a package of measures addressing patients with LEP or other communication barriers could include standards related to interpreter and other communication and language assistance services, measures addressing the availability and timeliness of such services, and targeted surveys assessing patient experiences. Purchasers could use the measures to incentivize such practices or require such a package for participation in special payment programs. Combining LEP with other functional communication challenges would broaden the population for reporting.

NEXT STEPS

More work will be needed to apply this integrated, patient-centered framework to the adaptation and development of measures that can be used for quality improvement and accountability.

Implementing structure measures may be the most immediately available opportunity, due to the high interest in patient-centered care and the alignment of payer incentives promoting PCMH adoption. This broader approach holds appeal for providers and health care organizations because it is relevant to the entire population, and it offers the added benefit of providing an integrated framework for the concepts of health literacy, communication and language assistance, and cultural competence. Ongoing research to demonstrate the benefits of PCMHs for the general population, for improving health equity, and particularly for addressing the cultural and communication needs of vulnerable populations of interest will strengthen the momentum for this approach.

Stratifying existing performance measures may be the next most immediately promising strategy, which can support the research suggested above. CMS has already begun to publish quality measures stratified by race and ethnicity. Similarly, Minnesota Community Measurement is publishing stratified performance data, and some individual health care organizations

have developed equity dashboards for internal monitoring, demonstrating that stratification is feasible. Challenges remain, however, and improving data collection practices will be a necessary precedent step for many organizations—an activity that can be promoted through structure measures. The work may need to proceed stepwise, beginning with incentivizing better data collection, followed by incentivizing stratification and equity-focused quality improvement, before stratified quality measures are fully ready for public accountability.

Streamlining the selection of patient experience items and developing new and more agile approaches for collecting patient experience information about targeted cultural and communication issues will require time, effort, and resources. Stakeholders will be needed to help identify the most salient items and to negotiate their selection given the strong constituencies for each item set. Researchers will need to develop new methods to identify the relevant population to be sampled. It may be possible to survey patients who requested language services, but a broader net may need to be cast to obtain feedback from patients who might benefit from communication assistance but did not know how to ask. Organizations may need to first overcome challenges in collecting demographic data before better approaches to identifying the sample frame can be implemented.

Developing packages of measures relevant to different subpopulations can be implemented via voluntary action and payers. Organizations should have the opportunity to voluntarily implement measures to receive incentives. Alternatively, payers can require the reporting of measures for organizations that provide care for a diverse population.

Measures and methods need to be updated to address gaps and inconsistencies.

Our paper presents a first look at opportunities for the integration of health literacy, communication and language assistance, and cultural competence. The examples of measures provided are not intended to be exhaustive, but rather to be illustrative. It is possible that we may have missed important measures or misclassified some. In addition, there may be other, better ways to conceptualize the domains common across these concepts. A multi-stakeholder process involving representatives of patients with different cultural perspectives and language needs, payers, and representatives of different components of the health care system is needed to vet and fully develop these ideas. All of the recommendations depend on the active engagement of payers who drive performance through payment incentives. Although CMS indicated its interest in patient-centered care in the National Quality Strategy and in health equity through its Measure Development Plan drafted to comply with the Medicare Access and CHIP Reauthorization Act, the approach to adapting and updating measures needs to create alignment across multiple payers and different levels of the

health care system—practices, hospitals, networks, and health plans. Measurement should be implemented in the context of accountability programs.

CONCLUSION

Although the concepts of health literacy, communication and language assistance, and cultural competence grew out of different movements and historical contexts, they have many common components and address common concerns. The enhanced National CLAS Standards have done much to integrate these concepts by broadening the way we think about language and communication and culture. However, adoption of the standards continues to lag. Patient-centered care, which also shares many of the domains common across these concepts, may offer a more generally acceptable integrated framework because of its widespread appeal. There are many existing measures that address these common domains, which can be readily implemented through a patient-centered care lens, yet challenges remain. We suggest a sequence of steps forward to implement measures that will address the health literacy, communication and language, and cultural needs of an increasingly diverse population.