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Discussion Paper


Informing Consumers With Special Communication Needs About Health Care Quality

Implementing the Research and Action Agenda for Consumers with Special Communication Needs

By Christine Molnar, M.S., MPH, The Community Service Society of New York


Held December 11-12, 2000, New Directions for Research and Action was a conference designed to be a collaborative forum for discussing the challenges and opportunities of improving communication of information about health care quality to consumers. Discussions were to be based on the Research and Action Agenda, developed by the Work Group on Consumer Health Information.

Because that agenda does not address the problems of specific segments of the population, the Work Group commissioned a set of papers that focus on how issues relate to the information and health care needs of certain groups.

This discussion paper was distributed with the agenda in preparation for the conference in December 2000.


Contents

Introduction
Defining Populations with Special Communication Needs
Why We Need to Focus on Populations with Special Communication Needs
Task 1. Educate and Motivate Consumers to Use Quality Information
Task 2. Improve the Supply and Delivery of Consumer-Oriented Quality Information
Task 3. Develop Consumer-Relevant Quality Measures
Task 4. Identify the Market Characteristics and Purchasing Strategies that Support Consumer Use of Quality Information
Task 5. Evaluate the Utility and Impact of Consumer Information Efforts
References


Introduction

The promise of collecting and communicating performance data is that it will improve the provision of health care services. The Research and Action Agenda for Consumer Health Information ("the Quality Agenda") begins to define a framework to reach this goal. This paper examines the five tasks outlined in the Quality Agenda as they relate to hard-to-reach populations.

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Defining Populations with Special Communication Needs

Limited Literacy

Consumers differ in their skills and ability to comprehend and interpret consumer health information. Ninety million Americans, approximately 45 percent of the adult population, are functionally illiterate. This means they are unable to comprehend such concepts and tasks necessary to function in the health care system as:

  • Reading consent forms.
  • Understanding written and oral information given by clinical staff.
  • Following prescription or appointment schedules.1

About 45 percent of all functionally illiterate people live in poverty. Fifty percent of Hispanics, 40 percent of Blacks, and 33 percent of Asians have literacy problems. Immigrants who are not native English speakers are even more likely to have difficulty reading.2

Limited Education

According to the 1999 Current Population Survey (CPS), 83 percent of all adults age 25 or older have at least a high school education. However, certain subgroups were far less likely to have attained a high school diploma: 56 percent of Hispanics, 77 percent of African-Americans, and 65 percent of all immigrants lack a high school diploma. These racial and ethnic minority populations have fewer skills with which to interpret health information.

Low Income

Although the Bureau of the Census recently reported that the U.S. poverty rate is the lowest it has been in 20 years—in 1998, 12 percent of the population, or 32.3 million people, were living in poverty.3 Racial minorities are more likely than whites to live in poverty. The poverty rate for non-Hispanic whites was 7.7 percent, whereas for Native American and Alaskan Natives it was 25.9 percent, African Americans 23.6 percent, Hispanics 22.8 percent, and Asian and Pacific Islanders 10.7 percent. Again, the pressures and competing priorities facing low-income populations may be a significant barrier to seeking out and using quality information.

Immigration

In 1999, close to 1 in 10 Americans, or 26.4 million people, were foreign born. One half of all immigrants are from Latin America. More than a quarter are from Asia, the majority from the Philippines, China, Vietnam, and India. Immigrants are concentrated in several large states: in California 25 percent of the population is foreign born; in New York 20 percent; Hawaii 18 percent; Florida 16 percent; New Jersey 15 percent; Arizona 14 percent; and Texas 11 percent.4

Immigrants are less likely to have health insurance through their employers than native residents. In 1996, 44 percent of immigrant workers had employment-based health insurance compared to 54 percent of native workers. However, they are more likely than non-immigrants to receive Medicaid: 24 percent of immigrants participated in one or more means-tested non-cash program compared to 17 percent of native householders.5 Communicating health information to immigrant communities requires addressing their lack of insurance and their need for information about public programs such as Childrenís Health Insurance, Medicaid, and Medicare.

Limited English Proficiency

According to the 1990 Census Report (only the decennial Census asks about language proficiency), 25.5 million adults in the United States speak a language other than English. Of those, over 5 million indicated that they speak English "not well" or "not at all." The number of immigrants who have difficulties speaking English may, in fact, be much higher than what was reported by the Census.

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Why We Need to Focus on Populations with Special Communication Needs

As the data above suggest, racial and ethnic minorities are more likely to face substantial barriers to accessing information about quality because of poor language skills, low literacy levels, or lack of financial, educational, and/or health insurance resources. Racial and ethnic minorities also experience more barriers to health care services. They are less likely to have health insurance, to have a regular source of care, and to receive primary and preventive services.6 Communication about health care quality must address these disparities if it is to be relevant to minority communities.

Improving the availability and utility of quality information can be a positive force in the national effort to eliminate health care disparities—but only if it is made an explicit goal of the Quality Agenda at the outset. To improve quality for everyone, the benefits of available information, improved communication, and better decisionmaking must be universal. This requires a dual focus. At the level of the consumer, interventions must focus on minority, low-income, and immigrant communities. At the system level, performance measures and reports must recognize that these populations are often more costly to treat and at higher risk for adverse health outcomes.

This paper identifies specific tasks and challenges at both the consumer level and the system level that must be addressed for the Quality Agenda to reflect the needs of minority, low-income, and immigrant communities.

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Task 1. Educate and Motivate Consumers to Use Quality Information

Challenge: Tailor Information to Meet the Needs of diverse Populations

Developing an effective communication strategy to present information to a diverse audience on the importance of health care quality information is a tall order. The most cost-effective strategy would be to develop a universal message, but experience with successful health information campaigns, such as the many State-led tobacco control programs, suggests that different messages and targeted dissemination strategies to specific subpopulations are more effective at raising awareness and changing behavior than one universal message.

Because of the costs associated with such specific messages and localized campaigns, there is a need to research whether a single message could convey the complexity of the message about quality—that health care quality varies and that information about quality can and should influence how you use the health care system—across populations. At the same time, evaluations of more targeted communication efforts are also needed to identify successful interventions and to provide a justification for the costs associated with effective campaigns.

In the meantime, sponsors of quality information must make focused efforts to reach populations that face communication barriers due to race, language, and literacy. Simplifying the message, making it interesting and relevant, and having information available in many formats can help most audiences access this information.

Several "tried and true" strategies can help to minimize literacy barriers. The presentation of information should follow the principles of easy-to-read communication:

  • Large font size.
  • Pictures that illustrate the text.
  • A lot of white space on the page.
  • Action-oriented text that clearly states what the readers should do.

There are many excellent resources for developing low-literacy print material that can help sponsors of quality information.7 Non-print formats can also increase accessibility to information. Radio and television, particularly in non-English-speaking communities, are an effective outreach and education vehicle. Ethnic media are often searching for content and might welcome the opportunity to provide their audiences with information on health care quality, provided that the audiences had some familiarity with the topic.

Emerging technologies can also help provide solutions to reach people with poor language and literacy skills. Quality reports can be tailored to provide only information that is relevant to the user (i.e., limiting a report to providers or plans within a geographic region, or only reporting on providers with Korean language capacity) which can help to avoid information overload. Individualized reports cards, obviously a gold standard, can answer the question: who provides the best care for people like me? Answering this question is perhaps the most critical strategy to motivate populations experiencing communication barriers to use quality data.

Although minority communities do not have universal access to information technology, the information gap is narrowing, as almost all public libraries and many schools have access to the Internet. As computers continue to become more like televisions and as their entertainment content continues to grow, more and more of the U.S. population will become computer savvy, regardless of education level.

A third approach to addressing literacy barriers is to partner with educational institutions to inform consumers about quality information. In 1998, adult learning centers, which teach basic reading and writing skills and English as a Second Language classes, reached over 4 million adults (the majority from minority communities). Of these, 42 percent of were Hispanic, 29 percent white, 16 percent African-American, 12 percent Asian/Pacific Islanders, and 1 percent Native American.8 Fifty-five percent of adult learners are women—who are the usual health care decisionmakers within a family. Public health communication interventions have barely begun to use these venues to reach underserved communities.

The Health Education and Adult Literacy (HEAL) Project in Massachusetts, which is funded by the Centers for Disease Control and Prevention, incorporates information on breast and cervical cancer into pre-GED (High School Graduate Equivalency Diploma) and GED classes. Evaluations of this multi-year effort have found that studentsí literacy skills improve because they are motivated to learn important content that is relevant to their every day lives.9

This type of partnership is ideally suited for communicating complex information on health care quality. Adult education courses span a period of several weeks, giving students time to learn the comparison and research skills that are critical for decisionmaking. Most significantly, the people who attend these classes are the early adopters most health interventions hope to target—they are the individuals seeking new information, wishing to improve their condition, and who can communicate what they have learned back to their communities.

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Task 2. Improve the Supply and Delivery of Consumer-Oriented Quality Information

Challenge: Establish a Context for Quality Health Information

To use quality information, consumers must have basic information on how to navigate the health care system. Consumers are asked to negotiate a complex series of bureaucracies, which can intimidate even the most educated: employer benefit managers, insurance options, managed care organizations, and provider institutions, to name only a few. For immigrants, this complexity is compounded by their fear of jeopardizing their immigration status or of being deported, and by the lack of information available in their language. The enormous consequences of this consumer-unfriendly system are enormous. They include the high numbers of Medicaid-eligible families who are uninsured, and the many Medicaid beneficiaries arbitrarily assigned to managed care organizations because they didnít know or understand that they had a choice of health plans, and that this choice would determine which providers they could use.

Experience in many States with the implementation of mandatory Medicaid managed care programs suggests that when resources are dedicated to providing this basic information, Medicaid beneficiaries are more likely to understand their options and are more likely to choose plans and providers rather than to be assigned.10 The high auto-assignment rate nationally is an indication that a lot more education and outreach is needed to involve Medicaid beneficiaries in the importance of making a choice before we can begin to talk to them about how to make that choice and what type of information they will need to assess their options.

Choosing a health plan or provider is a major decision, yet consumers make many choices regarding their care in the course of treatment and disease management that could be better informed by quality data. At present, people with more education and financial resources are more likely to be active partners in their care by researching their options and through challenging clinical diagnoses and decisions. More research and targeted programs that focus on enhancing minority and immigrant decisionmaking are necessary to further our understanding of how to engage these populations in their health care.

Here again, partnerships are an important strategy to inform hard-to-reach communities. Organizations with ties to minority and immigrant communities can help consumers maneuver through the health care system and can also be important allies in establishing trust. Partnerships with faith communities, immigration and new citizenship organizations, advocacy organizations, ethnic media, and traditional healers can help disseminate messages about health care quality. Even more effective strategies include tailoring outreach activities to meet the needs of specific communities, such as working with hair styling salons to reach West African women (who can spend up to 8 hours getting braids). Such specific approaches can reinforce the perception that the health care system values and understands a particular community and can help to encourage its active participation. This is particularly important in communities that do not have a history of involvement in health care decisions.

The work of the Managed Care Consumer Assistance Program at the Community Service Society of New York (CSS) is an example where partnerships with community organizations have led to building a knowledge base and demand for quality data among minority, low-income, and immigrant communities. CSS has entered into partnerships with 25 organizations serving these communities, providing the partnering organizations with funding and comprehensive training on the health care system as a whole, and on how to identify the options available to people in the community. Each agency is trained to provide information on insurance and providers, to help individuals research their choices, and to provide them with counseling and advice on health care decisions.11

These 25 agencies have become aggressive disseminators of health care information. They use ethnic media to get their message out, through cable television, regular columns in community newspapers, and radio programming. They have found that ethnic media outlets are hungry for content immediately relevant to their readers or listeners, and they, as community organizations, have the credibility to negotiate those relationships. The community agencies are also establishing a presence in the faith institutions. For example, a Korean organization working with CSS has reached out to close to 1,000 Korean churches in New York City, which had previously been an untapped resource, to disseminate health information. As a result, these churches are informed about health information resources that are available to their members, and have begun referring individuals and families to the CSS program for guidance in finding appropriate health care.

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Task 3. Develop Consumer-Relevant Quality Measures

Challenge: Stratify Performance Data by Race, Ethnicity, and Income

To improve care for underserved communities, population-specific data must be available. Existing quality assessment measures are not refined enough to identify socioeconomic, racial, and ethnic disparities in quality. Without population-specific data, for example, Health Plan Employer Data and Information Set (HEDIS) measurements will not be able to identify the health plan with a large, low-risk, wealthy population that does not provide access to quality care for its high-risk, low-income members.

Because minority populations are at higher risk than others for poor health outcomes, they can be more costly and more difficult to treat. With population-specific data, performance of providers and plans serving high-risk populations can be compared to like organizations, not to providers serving healthier patients. Without population-specific data, a Medicaid-only health plan could appear to be providing less-effective care in comparison to a plan serving a wealthier, healthier commercial membership. With no adjustment for the population served, the Medicaid-only plan faces financial risks by serving this high-cost population and may find it difficult to compete for new business in a competitive marketplace.

Collecting this data will not be easy. A recent JAMA article identified the following barriers that must be overcome in order to collect and report population-specific data: the absence of relevant demographic data, privacy and data collection concerns, misuse of data, and health care organizational inertia and resistance.

Defining appropriate categorizations is yet another challenge to implementing population-specific reporting. For performance measures to be a force in eliminating disparities, demographic data must be specific enough to reflect the differences among populations. For example, the New York City Department of Health found that the category "Asian" obscured very real differences in birth outcomes that the more detailed categorization of country of origin was able to identify. The level of acculturation may also affect outcomes within the same ethnic group. To monitor the quality of care for recent immigrants and the undocumented—growing populations—providers need to be able track outcomes for these distinct populations.

Several providers have found the barriers to collecting race and ethnicity data more perceived than real. They have found success in creating a culture of comfort for disclosing demographic information. At New York University Medical Center, hospital intake workers have found that explaining to patients that their race, ethnicity, country of origin, and income will only be used for internal monitoring and to improve their care has been effective in allaying patientsí concerns. Other strategies include collecting information that may be easier to get as a proxy for some of the more sensitive data. For example, in New York City public hospital emergency departments, intake workers ask self-pay patients for their country of origin and their motherís maiden name as a proxy for estimating the undocumented immigrants served at the hospital.

Challenge: Incorporate Access Measures in Performance Data

For minority communities, an important determinant of quality is access to services—actually getting in the door to see a provider. Reports on quality should include the non-clinical components of care such as appointment availability, interpreter services, hours of operation, access to clinical trials, etc. For communities with limited English proficiency, access can mean the availability of printed information, clinical and administrative staff who speak their language, and interpreters, all of which are critical to making an informed choice. Reports on quality should also assess the competency of providers in serving a culturally diverse population through such measures as an examination of the providerís written policies on language access, the training of all levels of staff at the provider site, and regular monitoring of language access policies. These services can often have more of an impact on health outcomes than the actual quality of the provider.

Much of this access data is already collected by HCFA and State Medicaid agencies as part of their monitoring of the Medicaid and Medicare programs. Plans and providers can be held accountable to contractual access standards by including this monitoring data in performance reports made available to the public.

Challenge: Incorporate Support Services in Performance Data

For many low-income, high-risk communities, positive health outcomes are dependent on the existence of established links between clinical care and support services. These services include transportation, mental health services, home health care, and social work services. Such services, which are often hard to access even for the most persistent, can be virtually out of reach for people with poor language skills (English-language skills and/or literacy skills). For elderly immigrants, home health care and elder care is rarely available in languages other than English. Again, the closer performance measures come to revealing the actual experiences of vulnerable patients, the more likely it is that quality report cards will eventually result in improved access to care.

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Task 4. Identify the Market Characteristics and Purchasing Strategies that Support Consumer Use of Quality Information

Challenge: Increase Choice Among Minority and Low Income Communities

The extent to which a consumer has choice defines his or her interest and ability to use quality data. More minority Americans than other Americans report that they have few choices in where they go for medical care. The Commonwealth Fundís 1994 National Comparative Survey of Minority Health Care found that 30 percent of Hispanics, 28 percent of Blacks and 21 percent of Asian Americans reported having little to no choice compared to 16 percent of whites.13 More research is needed to understand the determinants of choice. Are minorities less likely to experience choice because they are more likely to be uninsured, in low-wage jobs with few insurance options, or have fewer resources to contribute to their health care coverage? The Quality framework can help to identify some of the barriers to choice and, ultimately, it should work toward providing more meaningful choices to these groups.

In the meantime, however, itís important to recognize the implications of producing and distributing performance data to people who may not be able to use it.

For example, New York State created consumer report cards for Medicaid managed care plans using the state Quality Assurance Report Requirements (QARR) data. The report cards compared all of the Medicaid managed care plans in the State on approximately 10 QARR measurements. Once the State got these reports into consumersí hands, it found that the first question consumers wanted to answer with the data was, which is the best plan (the one with the most stars on it)? Since it was a statewide report card, they would immediately discover that unless they lived in the county where that high-performing plan operated, they could not join the "best plan." Rather than empowering consumers to make sound enrollment decisions, the report card served to anger consumers who wanted to know why the highest performing plans were not serving their geographic area. While this outcome may have served an advocacy goal by mobilizing consumers to demand better options, it did not serve the immediate goal of helping them choose a health plan.

Challenge: Level the Playing Field for Safety Net Providers

The widespread dissemination and use of information about health care quality should not result in a reduction in the safety net. Safety net institutions—typically defined as public hospitals, Federally Qualified Health Centers, and community clinics—provide health care services to underserved, primarily low-income and minority, communities. Performance data can and should help to improve the quality of these institutions, but the institutions will not be able to compete without additional investment in their management information systems, because many of these providers operate using antiquated information systems. Few have automated systems that can generate HEDIS-level data, and they rely on audits of their paper records when asked to supply performance data.

Safety net providers face the additional challenge of treating the patients that no one else wants to care for: the uninsured, immigrant communities, and inner city and rural communities. The cost of caring for these populations can be higher than caring for the general population due to access barriers, poor adherence to treatments, and communication and cultural barriers. Safety net institutions are also under increased financial pressures as Medicaid reimbursement is reduced with the growth in Medicaid managed care and the amount of unreimbursed care for the uninsured continues to grow.

There are some innovative models for shoring up these institutions while still holding them accountable for the services they provide. Washington State has carved out interpreter services from the Medicaid managed care rates and reimburses providers on a fee-for-service basis. This removes any financial disincentives for the provider and has increased the use of interpreters for the multi-lingual Medicaid population. In New York, concerns about the impact of mandatory Medicaid managed care led to HCFA's establishing a Community Health Care Conversation Demonstration Project (CHCCDP) that provides funding to assist safety net institutions that provide care for the uninsured with the transition to managed care. Special reimbursement programs should target plans and providers that serve a disproportionate share of the uninsured.

Of course, the most critical strategy to protect safety net providers, and perhaps the most difficult, is to ensure that they receive adequate payment for the services they provide—reflecting the higher costs of treating vulnerable populations through risk-adjusted reimbursement rates.

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Task 5. Evaluate the Utility and Impact of Consumer Information Efforts

Projects that focus on informing consumers about health care quality should have as one of their objectives examining the characteristics, including demographic characteristics, of the populations served. The following questions should be included in any evaluation effort:

  • Are there differences in the demographics of the population using a sponsorís report card?
  • Are there disparities in the choices available by the demographics of the population?
  • Does the perceived usefulness of the quality report card vary according to the demographics of the population?

Answers to these questions can help purchasers select plans that will provide equal access to quality health care for all employees or beneficiaries. These questions can also fuel the drive to eliminate racial and ethnic disparities by identifying disparities and providing a road map for improvement at the plan and provider level.

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References

1. Health Literacy: Advancing Public Policy. Proceedings from the 3rd Annual Conference; 2000 Jan 18-19; Washington. New York: Pfizer; 2000.
2. Kirsch IS, Jungebut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, D.C.: Department of Education, 1993.
3. U.S. Census Bureau, Poverty Rate Lowest in 20 Years, Household Income at Record High. September 26, 2000 press release. (http://www.census.gov)
4. Census Brief: Coming to America: A Profile of the Nation's Foreign Born. March 1999 CPS. U.S. Census Bureau: August 2000.
5. Census Brief: Coming to America: A Profile of the Nation's Foreign Born. Based on the 1996 CPS. U.S. Census Bureau: August 2000.
6. Phillips KA, Mayer ML, Aday LA. Barriers to Care Among Racial/Ethnic Groups Under Managed Care. Health Affairs July/August 2000: 65-75. Collins, Hall, and Neuhaus. U.S. Minority Health: A Chart Book. The Commonwealth Fund: 1999.
7. National Cancer Institute. Clear and Simple: Developing Effective Print Materials for Low Literacy Readers. NIH Publication No. 95-3594, December 1994. Call 1-800-4CANCER or write Office of Cancer Communications, Bldg. 31, Rm 10A16, NCI, 9000 Rockville Pike, Bethesda, MD 20812.
Health Care Financing Administration, Writing and Designing Print Materials for Beneficiaries: A Guide for State Medicaid Agencies. October 1999. HCFA Publication No. 10145.
8. U.S. Department of Education, Office of Vocational and Adult Education. Division of Adult Education and Literacy, August 1999. URL: http://www.ed.gov/offices/OVAE/98enrlbp.html
9. Rudd R. National Center for the Study of Adult Learning and Literacy: Report #5. Harvard University: 1998.
10. Kaplan S, Greene J, Molnar C, et al. Educating Medicaid Beneficiaries About Managed Care: Approaches in 13 Cities. Commonwealth Fund, May 2000.
11. For more information, see the Managed Care Consumer Assistance Program Web site. URL: http://www.mccapny.org
12. Fiscella K, Franks P, Gold M, Clancy C. Inequality in Health: Addressing Socioeconomic, Racial, and Ethnic Disparities in Health Care. JAMA 2000;283:2579-84.
13. Collins, Hall, Neuhaus. U.S. Minority Health: A Chart Book. The Commonwealth Fund, 1999.

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Current as of October 2000


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