2

A Proposed Framework^1,2

NATIONAL COMMITTEE FOR QUALITY ASSURANCE COMMISSIONED PAPER

The workshop opened with Jessica Briefer French, assistant vice president for research at the National Committee for Quality Assurance (NCQA), providing context for the commissioned paper that she and her colleagues prepared for the roundtable. She began her remarks by making the case for what is needed for integration to occur. She noted that health literacy, cultural competence, and language access are each important in their own right, and they do share many goals; address overlapping, though not identical, populations; and have similar implications for the way providers approach delivery of care and services. “In a shift to value-based payment, there is growing recognition that many social risk factors should play a role in quality measurement to guard against unintended consequences for patients and for providers who care for patients with social risk factors,” said French. “We need an integrated framework then to ensure greater attention to these concepts in value-based purchasing arrangements.”

Before continuing, French discussed the definitions she used in framing the paper. The primary definition of “health literacy,” she said, is the

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¹ This section is based on the presentation by Jessica Briefer French, assistant vice president for research at the National Committee for Quality Assurance, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

² The original commissioned paper is provided in this proceedings as Appendix C; a revised version of the commissioned paper based on the discussion documented by this workshop proceedings is available at www.nationalacademies.org/healthliteracyrt.

capacity of an individual to obtain, process, and understand basic health information (IOM, 2004), but it can also apply to the capabilities of an organization to communicate effectively. “Cultural competence” refers to the set of congruent behaviors, attitudes, and policies to support cross-cultural work (IOM, 2001; OMH, 2001). It characterizes the skills of an organization and individuals to provide services and reflects a systematic strategy to address cross-cultural care. Language access includes the communication and language support services to enable individuals to communicate effectively (HHS, 2013). “We know a great deal about the details of all of these areas,” said French.

One thing that distinguishes health literacy from cultural competence and language access is that it affects a broader population and takes a universal approach to addressing limited health literacy. She noted that only 12 percent of the country is considered to be fully health literate, and for at least half the U.S. adult population, health literacy is a significant problem that creates real barriers to health care decision making. Cultural competence and language access issues, she said, apply to a narrower, albeit growing, population.

The 2013 update to the National Standards for Culturally and Linguistically Appropriate Services (CLAS) in Health and Health Care, also known as the enhanced CLAS standards,³ broadened the concept of cultural competence to include religious and spiritual practices and biological, geographic, and social characteristics. This was done to make the standards more inclusive of the variety of patterns or thoughts, communications, customs, beliefs, and other factors that could be associated with race, ethnicity, and language. French explained that this expanded concept reflects the fact that sexual and gender minorities and people with disabilities, for example, have cultural identities that may affect the way individuals in those groups relate to society or the health care system at large. Similarly, the enhanced CLAS standards consider language access to go beyond the obvious service of translating and interpreting for people with limited English proficiency and include other types of language challenges that arise from a hearing, visual, or cognitive impairment.

The enhanced CLAS standards also refer to understandable care and services as a means of getting to the broader issue of how an organization can make its services accessible through communications to a variety of patients, including those with low health literacy and other language concerns. This concept, said French, gets to an organization’s role in addressing these concerns. One concept the enhanced standards addresses is patient-centered care, which is care that is respectful of and responsive to individual

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³ Available at https://www.thinkculturalhealth.hhs.gov/clas/standards (accessed June 13, 2017).

patient preferences, needs, and values, maintaining that patient values guide all clinical decisions. Since 2001, when the Institute of Medicine (IOM) issued Crossing the Quality Chasm (IOM, 2001), patient-centered care has grown into a significant focus not only in the enhanced CLAS standards but also for many value-based public- and private-sector purchasing strategies, French noted. The Centers for Medicare & Medicaid Services’ (CMS’s) Merit-Based Incentive Payment System (MIPS), for example, ties payment to clinician performance in four areas, including quality improvement. “Entities that are certified as patient-centered medical homes (PCMHs) get full credit for quality improvement,” French said.

“Patient-centered care includes, but is broader than, the concepts of language, access, or cultural competence,” said French. “It focuses on individualized care that may elevate care for all patients, not just the subgroups with particular needs or vulnerabilities.” She noted that patient-centered care serves as a core principle for organizing implementation of the framework she and her colleagues developed, which she said distinguishes it from the enhanced CLAS standards. This focus arose, she explained, after the authors compared the domains of patient-centered care with the domains of health literacy, cultural competence, and language access and identified areas of overlap (see Table 2-1). A detailed assessment of the domains in Table 2-1 formed the basis for the proposed framework (see Appendix D, Exhibit 2).

TABLE 2-1 The Common Domains of Health Literacy, Cultural Competence, Communication and Language Assistance, and Patient-Centered Care

SOURCES: Adapted from a presentation by Jessica Briefer French at the Workshop on Quality Performance Measures for Integrating Health Literacy, Cultural Competence, and Language Access Services on May 4, 2017.

The culture and values domain, said French, plays out in a contextually specific manner in health literacy, cultural competence, language access, and patient-centered care. In health literacy, for example, the focus is on making an organization health literate, while in patient-centered care the focus is on clinician leadership in creating an environment of respect. “There is certainly overlap here in terms of the welcoming and respectful environment and the role of leadership, but the particulars are distinct,” said French. Workforce issues in the enhanced CLAS standards focus on the idea of workforce diversity as a key component for building an effective workforce that can provide culturally competent care. All of the other domains address training and skills development across a range of workers.

According to French, assessment occurs in two buckets: individual assessment, which involves understanding the needs, preferences, concerns, and experiences of the individual, and community assessment, which provides context as well as resources and an idea of the direction an organization needs to take for integration and community engagement. Communication addresses written materials, oral communication, and health literacy principles, including the use of multimedia approaches. With regard to patient engagement, the IOM (2001) identified several approaches to patient engagement, including providing time for communicating with patients and asking patients questions within the context of the therapeutic relationship. The enhanced CLAS standards address patient engagement through language services and being able to help patients both understand and participate in health care decision making. Other authoritative sources stress collaborative care models that involve patients in their own health care processes, French said.

Current Measures

According to French, a significant number of relevant structural, process, and patient experience and outcome measures already exist. Structural measures, she explained, look at the capacity or infrastructure an organization needs to provide the outcome of interest, which in this case is both health equity and high-quality care; typically, structures are necessary but not sufficient to create quality. Processes are the activities organizations need to engage in to provide the outcome of interest. In most cases, process measures are expressed as a rate or percentage, such as the percent of patients with language needs who receive an offer of interpreter services when seeking care. Process measures do not reflect whether or not a patient received good care, but whether a helpful or necessary particular process of care was delivered, she said. Outcome measures—in this case health equity, effective communications, and shared decision making—reflect improvements in health equity and patient experiences.

With regard to specific structural measures, the Communication Climate Assessment Toolkit (C-CAT) (Wynia et al., 2010), which was developed by the American Medical Association’s Ethical Force Program and is now stewarded by the University of Colorado,⁴ addresses a range of communication issues, including health literacy, culture, language access, and other barriers to communication. It includes surveys of patients and surveys of the providers and staff working with those patients. Though the National Quality Forum (NQF) has endorsed this tool, French said she is not aware of any widespread use. The RAND Cultural Competency Implementation Survey, also used rarely, is an organizational survey designed to assist health care organizations in identifying the degree to which they are providing culturally competent care and addressing the needs of diverse populations.

A number of mainstream accreditation programs, such as those run by NCQA and the Joint Commission, address most of the domains discussed above to some extent, though not in great detail, French said. NCQA offers a specialized multicultural health care distinction program, but it focuses narrowly on language and culture rather than health literacy, and it does not account for the broader concept of culture introduced in the enhanced CLAS standards and included in the proposed framework. It, too, has been used infrequently. NCQA’s most recent update of its PCMH recognition program has strengthened health literacy and communication standards, and, while this program is used widely, French said that “performance on the standards related to cultural competence, language services, and health literacy are not required to achieve recognition. There is a disconnect.”

MIPS includes quality improvement activities, and 4 of the nearly 100 possible activities providers can choose from address health equity specifically. Other activities related to population management and beneficiary engagement also align well with the proposed framework, said French. However, as with the PCMH program, this program uses a menu approach, and organizations can achieve the incentive without touching the equity-related activities.

Few process measures exist for health literacy, cultural competence, or language access. One measure, developed by the Institute for Clinical Systems Improvement (ICSI), assesses how well patients understand what to do in case of an acute cardiac event and highlights the teach-back method⁵ for assessing patient understanding. The CMS Five-Star Quality Rating System⁶ includes one measure for the percentage of time that teletypewriter

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⁴ See http://www.ucdenver.edu/academics/colleges/medicalschool/centers/BioethicsHumanities/C-CAT/Pages/C-CAT.aspx (accessed May 30, 2017).

⁵ The teach-back method asks the patient to explain in his or her own words what the clinician has said.

⁶ See https://www.cms.gov/medicare/provider-enrollment-and-certification/certificationandcomplianc/fsqrs.html (accessed May 30, 2017).

(TTY) services and interpretation were available when needed by prospective members, but it does not address how well plans meet members’ language needs once enrolled, French said. The George Washington University developed two measures on communication and language assistance, but French noted that the NQF endorsement for these measures has lapsed.

In contrast to process measures, a variety of outcome measures capture patient experience. The Consumer Assessment of Healthcare Providers and Systems (CAHPS) family of surveys includes separate item sets on health literacy and cultural competence. The only measure from these sets used in an accountability program addresses communication about medications. CAHPS surveys, French noted, are administered by mail or phone to a general population and are not well suited for capturing information from segments of the population for which this methodology does not work well.

Strategies for Using an Integrated Patient-Centered Framework

The question French and her colleagues faced in developing the framework was how to take these existing measures and concepts and move them to implementation. “Despite the existence of relevant measures addressing the concepts of health literacy, communication, and language assistance, uptake of these measures has been limited,” said French. Their answer was to suggest four strategies for using an integrated patient-centered framework:

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.

The first and quickest strategy would be to use the available structural measures to build organizational capacity to measure and improve performance specifically related to communication and cultural competence. “This is a good way to get at issues related to organization culture and values, the training and diversity of the workforce, and community engagement,” she explained. “These measures exist and they can be used immediately, and the attention to patient-centered care creates real opportunity.” PCMHs, she noted, are highly aligned with concepts of health literacy, cultural competence, and language access. “The interest in patient-centered care can be leveraged to drive attention to these other domains. That is where the opportunity is,” she added. The challenge to this strategy, she continued, is that the selection of measures applying to a subset of the pop-

ulation, such as looking specifically at language or culture, is less appealing to providers than measures that apply more broadly. Direct implementation of the C-CAT or the health equity measures in MIPS will thus be a hard sell because they focus on one segment of the population. In that regard, French believes that, because patient-centered care applies to the entire population, this integrated model offers the best approach for moving forward.

The second strategy is to develop streamlined tools to capture patient experience. Measures for capturing patient experience exist, and research has validated them, said French, but there are challenges to implementing them. Survey tools for assessing patient experience related to health literacy, communication, and cultural competence are available, but they have achieved little traction so far. Streamlined tools with focused item sets could be used to target subgroups of interest, she said, and health care organizations could capitalize on direct data collection methods developed by other sectors. “Who among us has not walked out of a grocery store with the receipt saying ‘for a chance to win $50, fill out this survey?’” she asked.

While structure and process measures lay the foundation for integrated, patient-centered, and equitable care, patients and families are the authorities on whether care achieves those goals. “Our current survey approaches, which use broad-based tools, target a broad representative sample, and rely on inexpensive methods, are not working very well to capture what we need to know about these specific populations,” said French.

The third strategy she suggested would stratify existing quality measures as a powerful way to identify disparities and target opportunities for improvement. The feasibility of this strategy has been demonstrated in a number of areas, she said, though there is the challenge of collecting complete and accurate demographic data to use for stratifying the population. “The approach needed here is to move stepwise by incentivizing first data collection and second stratification based on those data,” said French.

The final strategy she suggested was to develop packages of measures tailored to specific population needs. These packages would include structure, process, and outcome measures with a focus on vulnerable subpopulations. For example, a package of measures on communication assistance could include the C-CAT, NCQA’s Multicultural Health Care distinction certification,⁷ measures of whether patients are screened for preferred language, and measures to capture the experience patients have with communications and interpreters. A measures package for cultural sensitivity could include the C-CAT, recognition as a PCMH, and measures of patient experiences with communication, trust, and discrimination. A health care organization could use these voluntarily or to demonstrate to payers that

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⁷ See http://www.ncqa.org/programs/other-programs/multicultural-health-care-distinction (accessed May 30, 2017).

they are meeting the needs of specific subpopulations of patients, such as those with limited English proficiency.

Next Steps

French said that she and her colleagues believe that the way to move forward is to first implement structural measures using a patient-centered framework. While organizations are building a capacity to collect demographic and social risk data and stratify existing quality measures using those data, the field can develop methods to capture patient experiences and develop packages tailored to various subpopulations. As she noted earlier, the enhanced CLAS standards integrate the concepts of health literacy, cultural competence, and language access, but their adoption continues to lag. “Patient-centered care, which shares the domains common across these concepts, may offer a more pragmatic and acceptable integrating framework because of its broad application to the population and widespread appeal,” said French.

In closing, she added that the steps she outlined are feasible, but that they do require guidance and a multistakeholder vetting process. “We are looking forward to starting that here today and look forward to hearing your comments and feedback about the framework, as well as your other ideas about driving this integration forward into implementation,” said French.

DISCUSSION

Bernard Rosof, CEO of Quality Health Advisory Group, began the discussion by asking French how the proposed framework addresses the issue of public accountability. The framework, she replied, is “baked into existing accountability programs. That is one of the beauties of taking this framework.” For example, MIPS includes a number of health equity measures and provides full credit to PCMHs for the quality improvement component of its incentive payments. Other public and private purchasing incentives also provide advantages to some types of PCMHs, she said. “That form of accountability has driven a huge amount of interest in PCMHs. That is why you see such growth in that kind of delivery system transformation,” said French.

The challenge with the proposed framework is to move the general interest in PCMHs to explicitly include the health equity–related issues that are already built into the measurement of PCMHs. “It is a small step rather than a big step to make those more explicitly included and perhaps elevate their importance in achieving the PCMH designation,” said French.

Christopher Dezii from Bristol-Myers Squibb asked if there is a need

for accountability regarding the health literacy of patients when providing care. French replied that the ICSI measure on teach-back does capture whether the patient understands what to do in the event of an acute coronary event. “It measures the success of the communication, which I think is an exciting point,” said French. She added that some measures in the CAHPS family of surveys capture the patient’s experience of communication in a manner that gets at health literacy, comprehension, and ability to participate in decision making. “Those are important measures that are not in use right now,” she said. Dezii noted that the ICSI measure assesses an event and wondered if it would be useful to have a broader metric that could capture whether a patient’s health literacy improved. French said she did not think so because the ICSI measure is a good example of a measure that can be used in the clinical setting for quality improvement purposes. “I think the best approach to accountability in health literacy lies with some combination of these patient experience measures and a set of process measures that address an organization’s approach to delivering understandable care and services,” she said.

William Elwood from the National Institutes of Health (NIH) first commented that he appreciated the appendix in the commissioned paper (see Appendix D). He then noted that the paper included a metric to capture whether an interpreter was present when needed, but that does not show whether the presence of the interpreter influenced the quality of care. Similarly, the paper mentioned a provider demonstrating specific behaviors to engage patients and facilitate their learning of health information in making decisions. His question for French was what she might suggest with regard to the research needed to fill gaps. She replied that research is certainly needed to create the evidence that specific interventions can improve quality of care. “We have some, but there is not really a strong body of literature that says doing this results in better health care quality,” said French. “We have a few [studies] in the communication realm, focused on patient safety and availability of language services and so forth, but that body of evidence could certainly use some more work.”

In terms of measurement, French said that the area needing the most work is on how to get information on the patient experience. “What is the best way to target the population that needs to be asked? What is the best way and timing for asking those people? Do you do it at the point of care? Can you do that without introducing bias because the patient does not want to disappoint the provider? What is the best way to reach those patients?” she asked. The answers to these questions, she added, need to be studied in the laboratory and tested in the field. Rosof added that part of the problem is that evidence is needed to create the guidelines for creating measures.

Marin Allen from NIH voiced her concern that the framework will have to go through the same trajectory as health literacy did of starting

with a focus on the individual and then eventually moving that focus to the organization. She noted that when talking about limited English proficiency, it is important not to blame the patient. “Every time we put the focus on the skills of the individual as being the key to this process, I think we are missing an opportunity to make the institution look at this in a different way,” said Allen. As an example, she said that a metric on the amount of time that TTY or an interpreter is available is quite different from one that looks at whether the person understands what is happening. French agreed with that concern and said that the proposed framework does focus on the organization’s response to the changing demographics and needs of the population. The needs of the population, she said, include providing a variety of language services and supports or other communication services and supports, as well as knowing which of those are needed by whom. That, she added, requires understanding the individual.

Catina O’Leary from Health Literacy Media agreed with Allen that the focus of the framework should be on organizations and that it should also stress learning, not just checking boxes. She said she was struggling with the concept of patient-centered care as a framework for measurement and was unclear about how French and her team compared concepts in health literacy, cultural competence, language access, and patient-centered care (see Table 2-1). French explained that they did not do an exhaustive literature review but did use what they thought were authoritative sources related to each area. For health literacy, they used the Office of Disease Prevention and Health Promotion (ODPHP) National Action Plan to Improve Health Literacy (ODPHP, 2010), a number of resources from the Centers for Disease Control and Prevention (CDC), and the IOM’s Health Literacy: A Prescription to End Confusion (IOM, 2004). For cultural competence, they referred primarily to the enhanced CLAS standards blueprint, and for communication and language assistance they relied on the U.S. Department of Health and Human Services (HHS) Language Access Plan (HHS, 2013) and CDC’s Welcome to Health Literacy for Public Health Professionals training modules.⁸ For patient-centered care, they used the Picker Institute Principles for Patient-Centered Care,⁹ Epstein and Street’s Values and Value of Patient-Centered Care (Epstein and Street, 2011), the Joint Principles of the Patient-Centered Medical Home (AAFP, 2008), and several other sources.

After O’Leary again noted her confusion, Rosof asked if she was willing to accept that patient-centeredness is an overarching or crosscutting concept and not a separate domain. O’Leary replied that she sees patient-centeredness as a piece of the three areas but not an inclusive concept. Health literacy, for example, is more than just an individual deficit that

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⁸ See https://www.cdc.gov/healthliteracy/training (accessed May 30, 2017).

⁹ See http://cgp.pickerinstitute.org/?page_id=1319 (accessed May 30, 2017).

only plays out when patients are in care. Rosof noted the point and said it could be a topic for further discussion.

Terry Davis from the Louisiana State University Health Sciences Center noted the importance of including the caregiver in these metrics because the caregiver’s perspective and experience can differ from those of the patient. French agreed and said it is one of the gaps in the existing suite of measures on patient experience. She also said that families have significant roles in various cultures and it is important to capture the family experience as part of the number of measures taken of the patient. Elwood added that the experience of health care providers is also important to measure and that the suite of proposed measures does not seem to account for the quintessential humanness of patient–provider interaction. He pointed to the important learning that occurs on the provider side from interacting with people from different cultures, and with different language skills. “It seems to me we are missing an opportunity to inform health literacy, cultural competence, and the practice and delivery of health care if we do not account for the entire feedback loop,” said Elwood.

Michael Wright from Northwell Health commented on the growing importance of the community health worker (CHW) and wondered if there is a way that metrics could do a “deeper dive” into that role to look at the evidence for impact on the community with regard to the different domains. Andrew Sanderson from the Office of Minority Health (OMH) at HHS then asked if creating a separate distinction designation for multicultural health rather than making it a part of accreditation limits its usefulness. French responded that if the multicultural health care standards are part of a widely used accountability program, such as Health Plan Accreditation, there would potentially be more exposure to the standards and possibly more uptake, as organizations fight for every possible point. The tradeoff is that the multicultural health care standards would be a few among many, and their actual value would thus be limited, so organizations could still achieve accreditation without giving them much attention. She noted that developing an accreditation program is a balancing act among many stakeholders. “If it comes out as a required component or if it is necessary to achieve a certain score, something else gets bumped,” said French.

Joan Kelly from the New York University Langone Health System suggested there might be an opportunity to include the measures from CMS’s new strategy for personal and family engagement in this framework. She also agreed with the earlier comment that the framework should be broadened beyond patient-centered care to include person, family, and caregiver engagement. The challenge, she said, will be to identify what additional measures will be needed to include that perspective. French reiterated her earlier statement that some research gaps need filling, and that this would be an important one to fill. She noted, though, that when moving into accountability

measurement, it is important to find a measurement that can be generated as a by-product of the care process and not create new data collection streams. “If you are going after existing bits of data that are easily married, you can use those for accountability measures. If the data do not exist yet and you have to create them, it is a different challenge,” said French. Kelly added that there is an opportunity to expand and identify additional measures that are already happening in the system and that could be added into the framework. Rosof concluded the discussion by agreeing with Kelly that this should be part of the ongoing discussion about the proposed framework.