The second of two panel sessions with implementers was moderated by Ignatius Bau, an independent health policy consultant. The panelists were George Isham, senior advisor to HealthPartners; Alicia Wilson, executive director of La Clínica del Pueblo; Knitasha Washington, executive director of Consumers Advancing Patient Safety; and James Crall, chair of the Division of Public Health and Community Dentistry at the University of California, Los Angeles (UCLA), School of Dentistry and director of the UCLA-First 5 L.A. 21st Century Dental Homes Project.
WHAT DO YOU LIKE ABOUT THE FRAMEWORK AND WHAT IS MISSING IN TERMS OF INTEGRATING THE CONCEPTS OF HEALTH LITERACY, CULTURAL COMPETENCE, AND LANGUAGE ACCESS?
Isham replied that he is not sure that the framework will facilitate patient-centered care that is literacy, culturally, and linguistically sensitive. He noted that, though the commissioned paper does state that the goal of the framework is to use an integrated approach to improve quality and
1 This section is based on the comments of George Isham, senior advisor to HealthPartners; Alicia Wilson, executive director of La Clínica del Pueblo; Knitasha Washington, executive director of Consumers Advancing Patient Safety; and James Crall, chair of the Division of Public Health and Community Dentistry at the University of California, Los Angeles (UCLA), School of Dentistry and director of the UCLA First 5 L.A. 21st Century Dental Homes Project, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
care and reduce disparities, he wondered if that was too narrow in terms of what some organizations can do today with respect to affecting the desired outcomes. “I wonder if it is time to think about the universal precautions approach,” said Isham. “I think that has been a useful framework for raising the entire bar to some low minimum standard.” In his opinion, it needs to be clear whether the purpose is to set a low entry-level standard or push the entire delivery system forward no matter where particular organizations are in their capabilities.
One major shortcoming to the framework, Isham noted, was that it only focuses on health care itself and does not address the impact that health care organizations can have outside of their walls and in the community. He posed the question of whether the framework should focus on vulnerable populations or the entire population, and whether it should include all of health care, ranging from small practices to large health care systems that include health plans.
While Isham did applaud putting patient-centeredness as the framework’s core concept, given its importance in realigning care away from being provider centered to better respond to the individual backgrounds, preferences, and concerns of patients, he said he did not see anything in the commissioned paper about the structure of data needed to show how individual practitioners respond to their patients’ preferences. “You cannot go anywhere unless you understand how people want to be treated, not how you think they should be treated,” said Isham. He noted that focusing on patient-centeredness could be the type of disruptive innovation that is needed.
He voiced concern that the framework, by bundling measures together, could actually have the unintended consequence of holding back those organizations such as his that have been collecting and using data on language preference for many years and have had a head start on improving language access. He also noted that effectively meeting the health literacy needs of patients is complicated and not a destination in and of itself, but a journey to get to the right destination of excellent patient care and good health outcomes for the entire population. In that respect, he said the paper does not look deeply enough at the full spectrum of opportunities to improve health literacy.
Isham said that he was not yet convinced that integrating the concepts of health literacy, cultural competence, and language access would produce superior performance on any of these individual dimensions. “Optimizing an entire package, however formulated, may suboptimize the performance of any one of the components,” said Isham. He also worried that the framework was not constructed to reflect the changing nature of health care from one focused on the individual clinician providing care to one that uses care systems with sophisticated capabilities to address the needs of patients. “We need an approach that helps all these different settings to improve,” said
Isham. He believes that integration must occur locally in a manner relevant to local issues. “I think it is going to be hard for a national approach to superimpose on that effectively and without creating undue burden and interfering with local implementation,” said Isham. As a final comment, he noted the opportunities that information and analytic technologies present with regard to data collection and analysis and for increasing transparency. Health information technology can help support “system-ness” among providers, moving away from practicing medicine on one’s own to working within systems of care. However, he also cautioned that this may not be popular with providers and that there are ethical issues when those who have and control information then have an imbalance in power.
Washington responded to the question by saying that advancing any model that promotes equity in the broader context of quality and safety is a good agenda. “I think that this is a leap in the right direction in terms of the integration of these approaches, and it is adaptable, but I say this in the context of all the things that we need to be concerned about in moving forward in this way,” said Washington. To illustrate that point, she said that during the more than 15 years she has been working as a health care professional, she has lived two separate lives, one focusing on improving safety and quality and the other on improving equity, with the former paying the bills and the latter being her passion. However, when she lost her father to a preventable medical error, she then saw the connection of how a lack of cultural competency and health literacy affects both quality and safety.
Washington noted a few things to consider regarding the framework. The first was that focusing on health literacy, cultural competence, and language access could have the unintended consequence of sending a message that addressing these three concepts alone will close the equity gap. Another concern was that many health care organizations might not have the capacity or understanding of the problem to engage individuals and families in work to improve equity and reduce disparities. Organizations must be able to respond effectively to patients’ values and beliefs that are different through a commitment to diversity and inclusion. She also repeated the call for collecting data on personal attributes and added that it will be important to ensure that the workforce collecting those data is diverse and reflective of the communities in which they work.
Her final comments concerned intentionality and leadership and their importance in advancing work involving person and family engagement. She noted that the National Partnership for Patients has shown that there is a direct correlation between organizations with strong leadership and intentionality with regard to quality and positive results on measures of person and family engagement.
Wilson noted that her organization is an FQHC and an NCQA-designated PCMH serving a mostly Latino recent immigrant population
with limited English proficiency. Reflecting on the PCMH designation process, she said she was intrigued by the idea of marrying the concepts of health literacy, cultural competence, and language access. When her organization was preparing for that process, she and her colleagues reviewed the basic parameters and felt confident that they had in fact been a PCMH for 30 years. However, when they started building the structure to demonstrate La Clínica del Pueblo’s best practices, they realized that they needed additional work to transform processes to standardize their best practices across all of their care teams. In that regard, she suspected that going through the framework would be a wake-up call for many organizations. For example, she realized in going through the framework that, although La Clínica del Pueblo provides most of its services in Spanish and in fact provides interpreter services throughout the entire Washington, DC, metropolitan area for those who speak Spanish, it did not have the same processes in place for patients who spoke languages other than English and Spanish.
Wilson said that she believes there is a great deal of value in having objective measures such as those in the framework to enable an organization to truly check its own mythology about itself and assist with standardization. She acknowledged that diverting money from providing care to collecting data was not her first choice, but she now realizes the value of doing so. “Having objective standards by which people can measure their own improvement is going to be an enormously positive thing for vulnerable communities and for folks who have low literacy or are culturally excluded from mainstream institutions,” said Wilson. Having said that, her concern is that implementing the framework will take so much work that it will get in the way of providing quality care. Cost-effectiveness, she added, is big part of what she has to worry about as an executive director of a health center. Her expectation with becoming a PCMH was that the investments made in achieving that designation would be rewarded financially, but this has yet to happen. “We adopted this as the right thing to do, that it would advance our goals as an organization and improve our quality,” said Wilson. “We have almost no reimbursement yet that recognizes that investment and we are struggling to pay for those costs.” Her recommendation was to make sure that this framework does not become an unfunded mandate and to work with payers to reward organizations that implement the framework.
Speaking from his perspective as an oral health specialist, Crall said he strongly supports the framework’s patient-centered focus and the role it can play in helping the dental profession in its work to become more patient centered. He is a member of the Dental Quality Alliance, a collection of dental and other health care provider groups and payers working with the Joint Commission, NCQA, and federal agencies to create a focus around measurement, quality improvement, and performance improvement with a
relatively limited set of resources compared to other sectors of the health care enterprise. One aspect of this effort involves working with a group led by researchers at The University of Iowa to develop definitions and components of a patient-centered dental home and to then develop measures once that framework has been established. He did question whether it was appropriate to combine quality improvement and accountability into one domain in the proposed framework. “From our perspective, those are two different domains. They engender different responses from different players in the health care delivery and the measurement fields,” said Crall. From a perspective gained from a project sponsored by First 5 L.A. that he has directed to expand dental care for young children and pregnant women, he applauded the framework’s emphasis on CHWs and community engagement.
Washington, based on her experience with the CMS Partnership for Patients Transforming Clinical Practice initiative, said that the process for developing the right measures needs to include real patients. After that, patients working with clinicians and administrators can pare the metrics down to a limited but fundamental set tied to equity. Once the metric set is in place, health system leaders need a roadmap for implementing the measures. This process is not about checking off boxes on a checklist.
The short answer from Isham was no. “I think in the context of this paper, it is pretty important to think about the broad contemporary complement of potential care system interventions to get to the objective of improved health literacy, and therefore better patient outcomes and equity,” he said. He suggested that a report exploring whether hospitals can improve community health (Norris and Howard, 2015) could provide a way to start thinking about how to remake an organization to support equity, health literacy, cultural competence, and language access. This approach, said Isham, involves looking at every aspect of how an organization is configured, including but also beyond the care team. He noted the concept of mass customization, or use cases, to align staff, data, and investments toward improving community health.
Commenting specifically on health literacy, Isham said that what is needed is a strategy that moves upstream from the health care enterprise, one that addresses the large percentage of people in the United States with
low health literacy. For guidance, he suggested a recent perspectives piece commissioned by the roundtable (Sivanand et al., 2017) that talks about training people in Head Start to introduce children to health literacy. “That approach is outside of the clinic and would be a good complement to this work,” said Isham.
Absolutely, said Crall, particularly when a concise set of measures becomes available. “Clearly, the patient-centered dental home concept needs to encompass these three domains and indicate they are all important.” He said that such a set of measures can help senior leadership and frontline practitioners know to what extent they are having an impact on the individuals they are trying to serve as changes in care delivery are made within the organization.
WHAT WOULD BE THE IMPACT OF INTEGRATING MEASURES OF HEALTH LITERACY, CULTURAL COMPETENCE, AND LANGUAGE ACCESS?
One potential impact, said Wilson, would come from collecting the data needed for these measures. With thoughtful analysis, these data could do more than just tailor patient-centered care—they could also provide a broader assessment of the structural barriers that a health system’s patient population experiences. For example, patients do not just have language “preferences” but face structural barriers in learning English. Her organization, for example, asks its patients for country of origin and profession in addition to standard information such as age, family size, date of birth, and income level, but she would also like to know how many years of formal schooling a patient has as a way to get at literacy level and how a patient assesses his or her own level of English proficiency.
In Wilson’s opinion, this framework could help standardize data collection and provide an opportunity to access more nuanced information about a patient and the larger population a health system or practice serves. Standardized data and more detailed information about an organization’s patient population could also improve risk stratification methodology, which is becoming more of an issue as the nation’s health care enterprise moves toward outcomes-based payments. Such data could also enable research aimed at better understanding the connections between social determinants, such as low literacy, and health outcomes. She also sees the framework as a tool for breaking down some of the structural barriers that keep patients from identifying their language or cultural preferences. “I
would be really intrigued to see when we get to the implementation side of this, how can you use the data derived from these measures to look at the structural barriers to care and look at the perpetuation of inequities that happens because of the way that we construct our services, making them open or closed to certain groups,” said Wilson.
Isham said the recommendation in the commissioned paper on data collection and the importance of using it to drive improvement is important, and while he thinks the recommendation to start with structure has merit, he is ambivalent about it. On the one hand, he said, structure can be useful in terms of a checklist to improve settings such as primary care medical homes. On the other hand, if these measures become required by either regulation or accreditation standards, structure can be a straitjacket. “Quality standards tend not to migrate as quickly as they need to in terms of their utility,” said Isham. “Look at many of the metrics in NCQA’s performance group that have outlived their usefulness and are hard to move out of the system.” His concern, he added, is that these measures could translate into a burden and a waste of effort. He noted that his organization has measures that it believes are improving care, and some of them overlap with those that are required. However, many of the measures are ones that they address simply to check a box, and those, he said, need to be eliminated.
Washington said that the movement to look at person and family engagement as part of quality improvement has been widely accepted, though there is a great deal of foundational literature that she believes is stale and should be challenged because it does not include equity. In her opinion, moving forward with the patient-centered care emphasis of this foundation should include emphasizing that the equity piece is missing from many of the programs the field is developing. In fact, she suggested embedding equity as an overarching theme along with patient-centeredness. Another missing piece from the current movement toward patient-centered care, she added, is any specific mention of outcomes. She recommended that implementation of this framework should look to the work that the Center for Medicare & Medicaid Innovation is doing on patient-reported outcomes.
Wilson remarked that one thing she appreciates about gaining the PCMH designation is that it is not just about reviewing whether the right policies are in place. Rather, it involves demonstrating several months’ worth of results and outcomes, and she urged that implementation of this framework should take that approach. She noted that when she and her
colleagues conducted a study of language accessibility at every hospital in the District of Columbia metropolitan area, there was a significant gap between having policies in place and actually delivering language access services. In fact, there was “an enormous divergence” by hospital floor or wing in terms of language accessibility, she said. Assessing both policies and actual performance, said Wilson, can be a tool for helping both health systems and individual practitioners become aware of their shortcomings and become accountable for how they treat their patients.
She then commented on the subject of quality measures for CHWs. La Clínica del Pueblo, Wilson explained, has been training promotoras since 1985 and feels strongly about issues relating to them. “I would ask for significant caution in the development of standardization related to community health workers and promotoras because they are inherently local and inherently uniquely tailored to the needs of their communities,” she said. Her concern is that such standardization could lead to a level of certification and elevation that would eliminate the community from the CHW.
Her final comments were about the focus on structural measures versus outcome measures. In her view, reducing structural inequities and barriers to care should start with measures of the structural responses to addressing disparities, accessibility challenges, and difficulties with navigation. At the same time, outcome measures would enable her to provide evidence, rather than simply anecdotes, that improving language access leads to better patient outcomes and reduced costs for the health care system. “I want to stress the value of a balanced focus on these two areas,” said Wilson. She concluded that the framework should be tied to the triple aim of better care, improved health, and smarter spending.
Thinking about implementation and the importance of efficient measurement, Crall wondered if the framework could have a concise core set of measures that would be applicable across a variety of conditions and care delivery settings, with supplemental sets tailored to specific contexts or conditions, similar to the CAHPS approach. He also said he would come down on the side of stressing outcome measures versus process measures, where outcomes are changes not just in health status but in patient experience too. Outcome measures, he said, could be tied to guidance and resources that would help care delivery systems understand what they need to do to improve quality. “From there, some identification of process measures or structure measures might be useful,” said Crall, “but if the emphasis is on quality improvement, they will figure out which ones are important for them to measure to move the dial and change things.”
Lindsey Robinson from the American Dental Association asked Washington to comment further on her call for having a greater emphasis on equity and to describe what kind of workforce is needed to better emphasize equity in the delivery of care. Washington first responded that the framework is conceptual and broad in context, and that its application will depend on what happens locally. What that means is that every organization will need to analyze who is on its clinical teams in terms of cultural competence and representation of the communities they serve. The importance of the latter, she said, is that research has shown that such concordance produces better outcomes even when cultural competency is strong. Acknowledging the challenge of doing so, Washington said, “As hospital administrators, we need to be figuring out how we are going to recruit diverse community members for the health workforce, for example, ex-felons. How are we going to change our system, so that we are now promoting the type of change in the community that we are really talking about?” The answer, she said, requires taking a critical analysis of the workforce, creating systems that recruit from the community, and making partners in the community. Addressing equity, she added, comes down to workforce diversity, community partnerships, and ensuring that there is an understanding that the framework is going to look different when applied in different segments of the nation. “We need to respect that and own it, and then we need to create systems that help support that,” said Washington.
Brach then asked Washington if she could elaborate on her vision of how engagement of patients and families in measurement can happen. Washington replied that the starting point is to challenge what is widely accepted because most of what happens in patient and family engagement does not consider equity. The challenge in looking at the individuality of every patient, she said, is that systems are designed to look at the aggregate. She noted that as she tours organizations across the country, diversity and inclusion do not exist to a large extent, though there is a strong movement across the country to create patient and family advisory councils for health care organizations.
Washington’s organization, working with the National Partnership for Patients, has developed five metrics for diversity and inclusion in the overall evaluation of some 3,900 hospitals in the partnership. This, she explained, is where the equity piece was birthed, and it is now embedded, along with health literacy metrics, in the CMS Transforming Clinical Practice Initiative. “What we have done is taken the framework of patient and family engagement, insisted that equity be part of it, and included measures for it,” said Washington.
Willis asked the panelists if they had any ideas on how to include the voice of mental health constituents. Wilson responded that, as a federally qualified health center, a majority of her organization’s board members are patients of the center’s services, and some of the patients are consumers of La Clínica del Pueblo’s behavioral health services. In addition, by hiring from the community it serves, the clinic can incorporate patients into its staff, and given that La Clínica del Pueblo offers extensive substance abuse outpatient services, it hires people with that experience in their backgrounds. She noted that all of the clinic’s health clinicians are first-generation Latino immigrants. However, she said, behavioral health still has a stigma that prevents many people from self-identifying, and one way in which her organization is tackling that challenge is to integrate behavioral health into primary care. This integration, she explained, has had a destigmatizing effect while also channeling patient engagement through some of the nonbehavioral pathways that may be safer for patients to engage with the system. Washington added that engaging caregivers, along with patients, is important too.
From the standpoint of mental health, Isham said that the lack of resources is a serious problem. His organization has invested resources in building behavioral health facilities and revamping emergency department processes to better serve those individuals with severe mental illness, though there has been no economic reward for doing so. In the primary care area, HealthPartners has integrated the care of patients with depression and is moving to include other common mental illnesses. Going forward, it will be important to measure the performance of these new systems and to collect data on race, ethnicity, and cultural and language preferences to ensure that care is equitable for all sectors of the population that this organization serves.
Wilson commented that health literacy around behavioral health is abysmal, and one of her organization’s signature programs takes a psycho-educational approach to teach the language of mental health. This effort has produced a significant increase in self-referrals for behavioral health services beyond what she and her colleagues imagined because they have been teaching what depression, anxiety, and posttraumatic stress disorder are in a safe setting. What she would like to have is some measure to quantify the impact of this program. Pleasant added that he knows of a health literacy intervention that consistently cuts the incidence of depression by 50 percent.
Bau added that the California Department of Public Health has supported a project called the California Reducing Disparities Project that is looking at mental and behavioral health in racial and ethnic communities, as well as lesbian, gay, bisexual, and transgender populations. The project has been focusing on gathering what it calls community-based evidence,
as well as evidence-based practices, said Bau. The point of this approach is to focus on identifying what works in these communities, which often means using peer mental health workers. California, he added, is now supporting the usual type of research to document the effectiveness of these community-based models.
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