What are the discrepancies between patient and provider explanatory models of illness and disease?

CULTURAL COMPETENCY AND QUALITY OF CARE:
OBTAINING THE PATIENT’S PERSPECTIVE
Quyen Ngo-Metzger, Joseph Telfair, Dara H. Sorkin, Beverly Weidmer,
Robert Weech-Maldonado, Margarita Hurtado, and Ron D. Hays
October 2006
ABSTRACT: Provision of “culturally competent” medical care is one of the strategies advocated
for reducing or eliminating racial and ethnic health disparities. This report identifies five domains of
culturally competent care that can best be assessed through patients’ perspectives: 1) patient–provider
communication; 2) respect for patient preferences and shared decision-making; 3) experiences
leading to trust or distrust; 4) experiences of discrimination; and 5) linguistic competency. The
authors review the literature focusing on these domains, summarize the salient issues and current
knowledge, and discuss the policy and research implications. Incorporating patients’ perspectives
on culturally and linguistically appropriate services into current measures of quality will provide
important data and create opportunities for providers and health plans to make improvements.
Support for this research was provided by The Commonwealth Fund. The views presented here
are those of the authors and not necessarily those of The Commonwealth Fund or its directors,
officers, or staff. This report and other Fund publications are available online at www.cmwf.org.
To learn more about new publications when they become available, visit the Fund’s Web site and
register to receive e-mail alerts. Commonwealth Fund pub. no. 963.

iii
CONTENTS
About the Authors……………………………………………………………………………………………. iv
Acknowledgments …………………………………………………………………………………………….. v
Executive Summary………………………………………………………………………………………….. vi
Introduction ……………………………………………………………………………………………………..1
Methodology…………………………………………………………………………………………………….3
Aspects of Culturally Competent, Patient-Centered Care…………………………………………. 3
Patient–Provider Communication…………………………………………………………………… 3
Shared Decision-Making and Respect for Patient Preferences ……………………………… 7
Experiences Leading to Trust or Distrust ………………………………………………………….. 9
Experiences of Discrimination………………………………………………………………………. 13
Linguistic Competence ……………………………………………………………………………….. 14
Discussion……………………………………………………………………………………………………… 20
Implications ……………………………………………………………………………………………………. 22
Recommendations for Providers and Health Systems ……………………………………….. 22
Recommendations for Applied Research ……………………………………………………….. 23
Incorporating Patients’ Perspectives of Cultural Competence
into Quality Measures …………………………………………………………………………………. 25
Notes……………………………………………………………………………………………………………. 29
LIST OF FIGURES AND TABLES
Figure 1 Conceptual Framework of Culturally Competent Care
from the Patient’s Perspective ………………………………………………………………. 2
Table 1 Comparisons of Diverse Patients’ Health Care Experiences and
Quality of Care Domains Covered by the CAHPS Instruments ……………….. 26
iv
ABOUT THE AUTHORS
Quyen Ngo-Metzger, M.D., M.P.H., is assistant professor of medicine and director of
Asian health studies at the Center for Health Policy Research at the University of
California, Irvine, and adjunct natural scientist at the RAND Corporation, Santa Monica,
Calif. Her research interests include the health status and health care needs of immigrant
populations. In particular, she is interested in how cultural and linguistic barriers
contribute to health disparities, and in developing interventions to improve chronic
disease management among vulnerable populations. She received her M.D. from the
University of Chicago and her M.P.H. from the Harvard University School of Public Health.
Joseph Telfair, Dr.P.H., M.P.H., M.S.W., is professor of public health research and
practice at the University of North Carolina at Greensboro and senior advisor to the
Center for Cultural Competence at Georgetown University. Dr. Telfair received his dual
M.S.W./M.P.H. from the University of California at Berkeley. He later graduated from
Johns Hopkins University School of Hygiene and Public Health as a Doctor of Public
Health. His expertise and areas of interests include community-based and communityoriented
program evaluation and research; culturally competent research and evaluation;
health practice, research, program evaluation, and policy issues of women, teens and
children with chronic conditions.
Dara H. Sorkin, Ph.D., is assistant professor at the Center for Health Policy Research
at the University of California, Irvine. The focus of her research involves understanding
and promoting social psychological factors that contribute to the effective management of
Type 2 diabetes, particularly among ethnically diverse older adults. Other research interests
include investigating the impact of social relationships on psychological and physical health
in later life. She received her Ph.D. in psychology and social behavior from the University
of California, Irvine.
Beverly Weidmer, M.A., is a survey director in the survey research group at the
RAND Corporation, Santa Monica, Calif. Ms. Weidmer has more than15 years
experience in both quantitative and qualitative survey research methodology, has worked
on numerous studies focusing on racial and ethnic inequalities in access to care, and has
considerable experience working with immigrant and minority populations. Ms. Weidmer
is experienced in all aspects of survey design and management, survey operations,
instrument design methods, and has special expertise in community-based, participatory
research and in working with difficult-to-reach populations. She received her M.A. from
the University of Texas, Austin.
v
Robert Weech-Maldonado, M.B.A., Ph.D., is associate professor of health services
research, management, and policy at the College of Public Health and Health Professions,
University of Florida. His research examines the impact of organizational and market
factors on access, quality, and costs of care for vulnerable populations, particularly the
elderly and racial/ethnic minorities. Dr. Weech-Maldonado and colleagues were the
recipients of the 1999 American College of Health Care Executives Health Management
Research Award for their study on diversity management of hospitals in Pennsylvania. He
received his M.B.A. from the University of Puerto Rico and his Ph.D. in business
administration from Temple University.
Margarita Hurtado, Ph.D., M.H.S., is principal research scientist at the American
Institutes for Research in Silver Spring, Md. Her research focuses on quality of care
measurement and improvement, survey and evaluation research, and health
communication research. She has a special interest in Latino health and health care for
underserved communities. Dr. Hurtado received her Ph.D. in health services research
from the Johns Hopkins University School of Hygiene and Public Health, as well as an
M.H.S. in international health and an M.A. in international relations.
Ron D. Hays, Ph.D., is professor of medicine in the division of general internal
medicine and health services research at the University of California, Los Angeles, and
senior behavioral scientist at the RAND Corporation in Santa Monica, Calif. He received
his Ph.D. from the University of California, Riverside.
ACKNOWLEDGMENTS
The authors would like to express their gratitude to Anne Beal, senior program officer at
The Commonwealth Fund, and Laurin Mayeno for their valuable assistance in reviewing
the drafts of this document and to Disa Lubker and Michelle Nguyen for their
administrative support.
Editorial support was provided by Martha Hostetter.
vi
EXECUTIVE SUMMARY
Noteworthy problems with access to health care and poor health outcomes among
racial and ethnic minorities have been documented. Provision of “culturally competent”
medical care is one of the strategies advocated for reducing or eliminating racial and ethnic
health disparities. Cultural competence has been defined by the Office of Minority Health
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.”
This report examines culturally competent care from the patient’s perspective, explores
methods for assessing culturally competent care, and identifies areas for further research. In
particular, the authors sought to:
• develop a conceptual framework that identifies domains of culturally
competent care from the patient’s perspective;
• review the literature focusing on these domains;
• summarize the salient issues and current knowledge; and
• discuss the policy and research implications.
Aspects of Culturally Competent Care from the Patient’s Perspective
Patient–provider communication. Patient–provider communication can be affected by
such factors as differences in verbal and non-verbal communication styles and explanatory
models of illness. Minority patients and individuals from lower socioeconomic
backgrounds tend to receive less health-related information from their providers compared
with non-minorities and individuals from higher socioeconomic backgrounds. Lack of
patient–provider communication about the use of complementary and alternative medical
practices is also a noteworthy problem.
• Provider/health system recommendations: The authors recommend that health
care providers and health systems continually monitor their patient populations
through quantitative and qualitative data collection methods. Specifically, data
collection should include patients’ race or ethnicity, socioeconomic status, English
language skills, and preferred language or language spoken at home. Intake forms
should be modified to include questions that measure health literacy, English
proficiency, language spoken at home, and use of complementary and alternative
medical practices.
vii
• Applied research recommendations: Research is needed to examine factors that
influence patient–provider interactions among diverse racial/ethnic groups.
Further research is needed to investigate the roles that patient navigators/coaches,
community health workers, parish nurses, interpreters, and case managers can play
in influencing patient–provider communication.
Shared decision-making and respect for patient preferences. Patient-centered care requires
effective patient–provider partnerships, including shared decision-making among
providers, patients, and families. Providers should work with patients to select treatments
that take into account patients’ health-related values, weighing available treatment options
and patient preferences. Current research shows that minority and low-income
populations are more likely than white or higher-income patients to feel disenfranchised
in the decision-making process and perceive a lack of respect for their preferences. In
addition, studies have found that patients who make frequent use of complementary or
alternative medicine often feel that providers do not respect their decision to use such
therapies instead of (or in addition to) conventional medicine.
• Provider/health system recommendations: The authors recommend that providers
investigate patients’ explanatory models of common diseases and their healthrelated
values and preferences (e.g., why a patient thinks he has lung cancer and
how he wants to involve his family in end-of-life decisions). At the systems level,
policies should aim to democratize decision-making processes among patients,
their families, and providers. Additionally, policies are needed to recognize
patients’ rights to use alternative therapy or community-based programs in addition
to conventional medical facilities.
• Applied research recommendations: Research is needed to investigate the
association between patients and providers’ race/ethnicity and their treatment
preferences. It is also important to examine what happens when patients and
providers disagree on treatment options. More research is needed to determine
how patients’ disclosure of their use of complementary or alternative medicine
affects patient–provider interactions. Finally, research is needed to examine the use
of lay health workers or other “cultural communicators” as facilitators. Cultural
communicators observe the doctor–client interaction and help the health care
provider and client understand each other.
Experiences leading to trust or distrust. Only a few studies have looked at the
underlying causes of patient dissatisfaction and distrust of providers among racial and
ethnic minorities. The existing studies consist mainly of small, qualitative investigations of
viii
special populations. Current research indicates that minority patients who have raceconcordant
providers report higher levels of satisfaction with their care and lower levels
of distrust.
• Provider/health system recommendations: It is important to evaluate the factors
that affect patients’ trust in their providers. Such factors may differ by racial/
ethnic populations as well as socioeconomic and insurance status. Providers should
seek to develop open channels of communication and empower patients
to speak up about issues affecting their trust.
• Applied research recommendations: Further research is needed to understand
why some patients prefer to be race concordant with their providers, and to
gauge the effects of racial concordance on access to care, quality of care, and health
outcomes. Research is also needed to explore and understand the root causes of
distrust in providers, particularly among Latino and African American patients, for
which studies conducted in different health care settings have
yielded contradictory results. Finally, there is a need to explore whether differences
in levels of trust of providers among racial and ethnic minorities, compared with
whites, result from past experiences with the medical system
or varying expectations.
Experiences of discrimination. Compared with white patients, racial and ethnic
minorities perceive more instances of racism in the medical care system, tend to be less
satisfied with their health care, and have higher levels of distrust in their health care
providers. The reasons for these perceptions have not been definitively determined.
Research on the role of racial bias or discrimination in the practice and delivery of health
care is needed, as are valid measures for use in large-scale, population-based studies of the
causes and health effects of perceived discrimination.
• Provider/health system recommendations: Providers need to be aware that racial
and ethnic minority patients might perceive discrimination or bias in the health
care system. Specific complaints of discrimination should be investigated and
structural, system-wide changes and improvements should be sought. Patients
should be given opportunities to voice their concerns about discrimination.
• Applied research recommendations: More research is needed to determine the
placement of responsibility (e.g., on providers, staff, or others) for discrimination in
health care settings and the characteristics (of patients or of the providers/staff
members) that are most associated with incidents of bias. In addition,
ix
understanding the consequences of perceived discrimination or bias on health is an
important next step for future research.
Linguistic competence. Compared with English-speaking patients and those with
higher levels of health literacy, limited English proficiency (LEP) patients and those with
low health literacy are less likely to use health care services and adhere to medical
regiments and more likely to have worse health outcomes. Linguistic competence includes
communication strategies for LEP individuals and those with low health literacy. Language
concordance between patients and providers is the most effective strategy to improve
communication and health outcomes for LEP patients, though the use of professional
interpreters can also be effective. Still, the majority of LEP patients lack access to trained
interpreters. There are also effective techniques for communicating with patients with low
health literacy.
• Provider/health system recommendations: The Joint Commission on
Accreditation of Healthcare Organizations (JCAHO) and National Committee for
Quality Assurance (NCQA) should require hospitals and health plans to collect
data on their patients’ health literacy and English proficiency as part of the
accreditation process. Insurers and policymakers should provide incentives for
health care providers to improve services that specifically target patients who have
low health literacy or limited English proficiency. Providers and health care
systems should avoid the use of ad-hoc interpreters to communicate with LEP
patients, and instead rely on trained bilingual staff and professional interpreters.
Health plans and providers must monitor and assess the quality of interpreter
services. Finally, medical schools and other health professional schools should
incorporate issues pertaining to communication with patients who have low health
literacy and/or LEP into their curricula. Medical schools should seek to increase
recruitment and retention of bilingual students.
• Applied research recommendations: Further research is needed to assess the impact
of various communication strategies for low health literacy patients, considering
effects on health-related knowledge, compliance with care regimens, and health
outcomes. More research on the mechanisms through which low health literacy
and LEP may affect health outcomes is also needed. Finally, it is important to
consider the implications for the health care system of patients who have both low
health literacy and LEP.
Patient–provider communication, shared decision-making, and trust affect the
quality of care of all patients, not just racial/ethnic minorities or those with low
x
socioeconomic status. However, problems in these areas of patient-centered care
disproportionately affect vulnerable populations. Incorporating patients’ perspectives on
culturally and linguistically appropriate services into current measures of quality
will provide important data and create opportunities for providers and health plans to
make improvements.
1
CULTURAL COMPETENCY AND QUALITY OF CARE:
OBTAINING THE PATIENT’S PERSPECTIVE
INTRODUCTION
Ample research has documented the existence of significant racial and ethnic disparities in
access to health care, as well as poorer outcomes and health status among racial and ethnic
minorities.1 Various studies have looked at the causes of these disparities and
recommended strategies for reducing or eliminating them. Among the strategies advocated
is the provision of “culturally competent” medical care. The Office of Minority Health,
using the definition developed by Cross and colleagues, has defined cultural and linguistic
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.”2 Although there has been much discussion in the medical, research, and public
health communities about “culturally competent care,” little is known about how to
accurately measure it.
In recent years, a “patient-centered” approach to the process and delivery of health
care has been identified as crucial to providing culturally competent medical care. The
Institute of Medicine defines patient-centered care as “care that is respectful of and
responsive to individual patient preferences, needs, and values.”3 McWhinney described
patient-centered care as being able to “see through the patient’s eyes.”4 Thus, one
important way to measure the quality of culturally competent care is to obtain patients’
perspectives. Patients experience health care through their interactions with providers and
other staff, and within the context of the health care systems such as health insurance plans
and health care clinics. Patients’ previous experiences and unique characteristics will affect
their views. For example, the perspective of care “through the patient’s eyes” may be
different for an older African American woman from Haiti than for a young, white, non-
Latino male.
This report examines culturally competent care from the patient’s perspective,
explores methods for assessing culturally competent care, and identifies areas for further
research. Figure 1 depicts a conceptual framework for obtaining patients’ perspectives on
culturally competent care. The authors developed this framework based on the conceptual
model of measuring health care quality among diverse populations developed by Bethell
and colleagues.5 Many provider and system factors contribute to culturally competent care;
this report focuses on the overlap between the three circles in Figure 1, which represents
areas of care best measured through patient reports, rather than through provider reports
or other sources.
2
The first two domains in these areas of overlap—patient–provider communication
and respect for patient preferences/shared decision-making—include interactions between
patients and providers: The other three domains—patient experiences leading to trust or
distrust; experiences of discrimination; and linguistic competency—refer to patient–
provider interactions, as well as patients’ interactions with other health care staff and the
health care system overall.
Patients may be the best and perhaps the only source for these types of
information. For example, one study found that Asian immigrants with limited English
proficiency (LEP) reported experiencing discrimination from office staff, including
interpreters, who “looked down” on them because of their limited English language
abilities.6 This type of information would not have been revealed from interviews with
Figure 1. Conceptual Framework of Culturally Competent Care
from the Patient’s Perspective
Patient Factors Provider Factors
Healthcare System Factors
•Access (ability to get appointments quickly, short wait time during visits, etc.)
•Healthcare facilities convenient for community
•Diverse workforce reflecting patient population
•Coordination of care between different providers and health care settings
•Quality improvement environment with continued patient feedback
•Patient/provider
communication
•Respect for patient
preferences/shared
decision-making
•Experiences leading
to trust or distrust
•Experiences of
discrimination
•Linguistic competency
•Race/ethnicity
•Age
•Gender
•Training/specialty
•Experience with
diverse populations
•Language competency
•Communication style
•Religion/spirituality
•Beliefs and values
•Explanatory models
•Race/ethnicity
•Age
•Gender
•Socioeconomic status
(education, income, etc.)
•Health literacy
•Insurance status
•Utilization (time constraints, transportation, etc.)
•Religion/spirituality
•Beliefs and values
•Explanatory models
•Expectations
•English proficiency
3
providers or health care administrators. Thus, the authors determined that these five
domains of culturally competent care should be measured “through the patient’s eyes.”
Other domains of care, such as access and coordination, are important aspects of quality of
care in general. However, because these domains of quality have been extensively
examined as part of “patient-centered” care, they are not examined in this report.
METHODOLOGY
Using the conceptual framework, the authors reviewed the literature addressing these five
domains of care. The authors searched for articles published in English from January 1990
to September 2005, focusing on empirical studies conducted in the United States that
included people of color (African Americans, Latinos, Asians and Pacific Islanders, and
Native Americans).
ASPECTS OF CULTURALLY COMPETENT, PATIENT-CENTERED CARE
Patient–Provider Communication
Some racial/ethnic minority groups and those with lower socioeconomic status have a
high probability of being uninsured, impeding their ability to seek and obtain health
services.7 But even when access to care, diagnosis, and illness severity are the same, some
minorities use health services that require a doctor’s referral at lower rates than whites.
This suggests that barriers to care may emerge in the context of patient–provider
interactions, rather than in accessing providers.8
Indeed, communication during medical interactions plays a central role in
decisions about subsequent interventions, and can influence patient adherence, satisfaction
with care, and health outcomes.9 One goal of the Cultural and Linguistic Access to
Services (CLAS) standards on “Language Access Services,” as derived from the Healthy
People 2010 goals, is to ensure the use of communication strategies to improve health.10
As defined in the Healthy People 2010 and CLAS documents, health communication is
“the use of communication strategies to inform and influence individual and community
decisions that enhance health.”11 This includes efforts to assist patients in reaching their
personal health goals. Better patient–provider communication increases awareness of
health risks and risky behaviors, helps patients make choices by clarifying complicated
issues, and increases the likelihood that patients understand and adhere to complex
treatment regimens.12 The negative impacts of ineffective patient–provider
communication on health may be increased when cultural and linguistic barriers are also
factors. Implementing the CLAS standards is expected to increase demand for appropriate
health services and lower demand for inappropriate services.13
4
A Commonwealth Fund survey conducted in 2001 found that there was a positive
association between physicians’ cultural sensitivity and patient ratings of the quality of
patient–physician interactions (including communication behaviors), regardless of the
patient’s racial/ethnic group.14 However, Asian Americans were less satisfied with care,
more likely to report not being involved in decisions about their care, and less likely to
report the doctor ever talking to them about lifestyle or mental health issues compared
with white patients.15 Another study suggests that some physicians may be more verbally
dominant, engage in less patient-centered communication, and exhibit lower levels of
positive exchanges with African American patients than with white patients.16 The study
did not explore the reasons for these differences, though racism may have played a factor.
Disparities in patient–provider communication. Some racial/ethnic groups and
individuals of lower socioeconomic status are more likely than non-minority individuals
and those of higher socioeconomic status to report poor communication with their
physicians.17 Findings from the Commonwealth Fund’s 2001 Health Care Quality Survey
indicate that, while all demographic groups reported problems with patient–provider
interactions, such difficulties were most pronounced for patients from racial/ethnic
minority groups as well as populations with low education levels, low health literacy, and
low incomes.18 Differences in communication styles and explanatory models of illness and
disease can affect patient–provider communication.
Differences in communication styles. Patient–provider communication styles can be
broadly grouped into verbal and non-verbal behaviors. As defined in the literature,
“verbal” health communication includes providing directions, giving information, asking
for clarification, showing concern, offering reassurance, talking socially, and establishing
agreement. “Non-verbal” communications includes body language, including facial
expressions and gestures designed to convey information and feelings such as happiness
and distress.
Communication works in two directions. More expressive patients seem to fair
better with Western providers than those that tend to be less expressive. Both verbal and
non-verbal interactions can be affected by expressiveness, a trait that is influenced both by
the patient’s individual personality and his cultural background. Street et al. found that
physicians’ dispensing of information was influenced by patients’ communication styles,
such as whether they asked questions or were otherwise expressive.19 Research has also
found that some physicians give more information to particular types of patients: for
example, more educated patients receive more diagnostic and health information than
their less-educated counterparts.20
5
Strategies to encourage patients to express themselves have been shown to
strengthen patient–provider communication. In a study of women with HIV/AIDS from
various minority groups, patients involved in activities to encourage participation in
decision-making about their care reported higher levels of communication with their
providers and received more information and had more positive interactions than those
who were not involved in such activities.21 In another study, Krupat and colleagues
showed that assertive behavior among black patients and those with low socioeconomic
status—but not among whites or those with low socioeconomic status—resulted in a
greater likelihood that physicians would order full tumor staging for women seeking care
for breast cancer.22
Examining the issue of communications from patients’ perspectives can yield
insights into how different groups value the different aspects of medical interactions.
African American, Latino, and Asian patients rated providers’ displays of “concern,
courtesy, and respect” as the most important factor in the health interactions.23 Physicians’
non-verbal and interpersonal communication behaviors related to empathy and
establishing rapport were found to be more important to minority patients compared with
white patients than the verbal transmission of health-related information.24 In separate
studies based on the Commonwealth Fund 2001 Health Care Quality Survey, both Ngo-
Metzger and Saha found that listening and spending adequate time were especially
important aspects of health interactions for Asian and Latino patients.25 In another study,
Latinos were more likely than other racial groups to mention accessibility and availability
as being important, while Asians and Pacific Islanders were more likely to mention that
physicians ordering tests and giving appropriate referrals was important.26 In contrast,
African Americans cited participating in decision-making and building a trusting
relationship with providers as the most important aspects of provider–patient
interactions.27
Discrepancies between patient and provider explanatory models of illness and disease.
Patient–provider communication involves the use of meaningful language and gestures by
providers to elicit a patient’s explanatory model of illness and arrive at a common
understanding.28 This approach to the construction of the meaning of health problems and
concerns has been labeled the “explanatory model” by Kleinman and defined as “notions
about episodes of sickness and its treatment that are employed by all those engaged in the
clinical process.”29 From a Western medical perspective, disease is the objective, measurable
pathophysiology that creates the illness, which is the meaning of the disease to the individual
and his or her social group.30
6
Discrepancies between a patient’s and a provider’s explanatory models of illness
and disease can lead to miscommunication. People who become ill, after self-treatment and
home remedies, make choices about what to do next (e.g., whether to consult popular, folk,
or professional sectors for additional assistance) based on their own assessment of their health
needs. Individuals may choose to seek advice or treatment from relatives (e.g., for routine or
familiar conditions), sacred folk healers (e.g., for spiritual or moral matters in which their
expertise is required), and/or physicians or nurses (e.g., for serious biomedical conditions).
People may act on one or more of these choices. For example, a state of illness perceived as
divine retribution for a dishonest act may be treated with prayer and repentance alone, or
may be treated with prayer together with medication prescribed by a physician.
Physicians, patients, and their families have explanatory models to guide them in
making choices about illnesses and treatments and give personal and social meaning to their
health experiences. Most providers trained in Western biomedicine belong to a biomedical
culture in which diseases are natural, mechanistic errors, correctable by repairing organs or
manipulating chemical pathways.31 In Western biomedicine, “disease” has no spiritual or
metaphysical causes, though some diseases (such as sexually transmitted diseases) may have
moral undertones related to risky behaviors. In contrast, patients from non-Western or
indigenous cultures may understand their illnesses differently, and the separation of mind,
body, and spirit characteristic of Western biomedicine may be difficult for such patients to
accept.32 For some patients, the meaning of illness may include natural explanations (such as
a fall that breaks a bone), supernatural (God’s will or malevolent spirits), or metaphysical (such
as bad airs or seasonal changes).33 Miscommunication may occur when providers view the
biomedical view of disease as the “right way” and discount the patient’s perspective on his or
her illness. When a provider and patient understand each other’s explanatory models of
disease and illness, negotiations for shared decision-making can take place in an atmosphere
of mutual respect rather than frustration and misunderstanding.34
Lack of communication about complementary and alternative medical practices.
Complementary and alternative medicine (CAM) refers to diverse practices and products
that are not currently considered part of conventional medicine.35 The use of CAM has
increased in the last two decades. It is estimated that a racially and ethnically diverse group
of 36 to 42 percent of the U.S. population used CAM in 2003, representing about $27
billion in out-of-pocket spending.36 An estimated 26 percent of African Americans, 28
percent of Hispanics, 36 percent of non-Hispanic whites, and 43 percent of Asian
Americans use CAM.37
7
The prevalence of CAM use among different racial/ethnic groups varies depending
on the definition used.38 For example, if the definition is expanded to include prayers for
one’s own health and megavitamins (high-dose vitamins), then approximately 60 percent
of whites, Asians, and Latinos and 71 percent of African Americans use CAM.39
Despite a steady increase in use of alternative therapies, there has been little change
in the rate of patients’ disclosure of CAM usage to their providers.40 It is important for
patients to discuss their use of CAM with their medical practitioners. Some therapies, such
as herbal or vitamin therapies, may cause adverse events or interfere with medical
regimens. Furthermore, knowledge of patients’ CAM practices can provide valuable
insight into patients’ values, lifestyles, and health beliefs, which may, in turn, assist
practitioners in providing optimum care.41 Yet, in a national survey of U.S. adults, 70
percent of patients who used CAM reported that their providers did not discuss CAM use
with them.42
Communication and patient-centered care. Effective patient–provider communication is
crucial to the health outcomes of patients, yet some demographic groups disproportionately
experience communication breakdowns. These problems may be partially explained by
differences in communication styles, explanatory models of illness, and views of conventional
Western medicine versus CAM.43 However, little is known about the types of interventions
that can help to bridge these communication gaps and improve patient–provider interactions.
Relationships between providers and patients are central to patient-centered care,
which is based on partnerships among clinicians, patients, and their families and takes into
account patients’ needs and preferences.44 This is furthered when patients receive
information that is easy to understand, when providers are aware of potential communication
challenges, and when care is provided with respect for patients’ explanatory models, social
environment, family context, and cultural beliefs and practices.45
Shared Decision-Making and Respect for Patient Preferences
The Institute of Medicine encourages providers to respect patients’ preferences and
promote their active participation in clinical decision-making to the extent that patients’
feel comfortable and are willing to take part. Patients may participate in their care in a
variety of ways, including having meaningful discussions about their preferences, knowing
all of the available options, and making final decisions about treatment. Patients who are
active participants in their care have been shown to have improved health outcomes,
including lower levels of blood pressure and blood glucose.46
8
Many people of color and those with lower socioeconomic status report problems
with shared decision-making and respect for their preferences.47 These individuals are
more likely than white patients and those of higher socioeconomic status to perceive a
lack of mutual trust and respect between them and their providers.48 Lack of mutual trust
and respect may limit clinicians’ ability to provide care and patients’ willingness to follow
clinicians’ advice. This can lower the quality of care and lead to increased morbidity and
mortality. Ideally, in shared decision-making, a provider helps a patient translate their
values into treatment decisions. Patients and providers collaboratively rank health-related
values as they pertain to the decisions at hand, weighing available treatments against
patient preferences.
A recent report by the Agency for Healthcare Research and Quality found that
“blacks, Asians, Hispanics, and low income populations are more likely to feel
disenfranchised in the decision-making process.”49 In a national survey, nearly one of four
people reported that they were not as involved in health care decisions as they would like.
Compared with whites, African Americans and Asians more frequently reported underinvolvement
in the health care decision-making process (e.g., 22% of whites, versus 27%
of African Americans and 42% of Asians reported that they were “not as involved as they
would like to have been”). Similarly, Latinos were more likely than non-Latino whites to
report feeling disenfranchised (34% vs. 21%), and low-income populations were more
likely than higher-income populations to report this (30% vs. 20%).50 In another study,
more African American patients reported that their visits with physicians were less
participatory than did whites.51
Roter et al. used audiotape analysis of 537 interactions to explore the relationships
between primary care doctors and their patients.52 A key finding of the study was that
African American and low-income patients were approached by their physicians in a
narrowly biomedical pattern of communication (e.g., one that precluded psychosocial
discussions and shared decision-making), compared with other patient groups. The reasons
for this are unclear, although provider bias and stereotyping may be part of
the explanation.53
Shared decision-making and CAM use. An important component of respect for
patient preferences is respect for their explanatory models of illness. As mentioned
previously, many patients choose to use CAM in addition to conventional Western
medicine. In a study among cancer patients, 35 percent of patients’ attempts to initiate
discussions about CAM were ignored by their providers.54 In another study that included
Latino patients, providers asked questions about the use of alternative therapies during
only 3 percent of discussions.55 To many patients, this lack of communication signified
9
disinterest on the part of their providers. Patients also worried that their providers may be
unsupportive of CAM use, or try to persuade them not to use CAM.56 Some patients
feared that their providers might emphasize the need for scientific evidence. Or, when
attempting to discuss CAM with their providers, patients feared they would become
overwhelmed by the statistics and data demanded by the provider.57
As discussed above, effective communication about CAM use is especially crucial
for patients who take herbs or vitamins that can interact with prescription medications.58
Patients are more likely to discuss CAM with their providers if they are confident that
their preferences will be respected. Showing respect for patient’s preferences should lead
to a more effective relationship and potentially better health outcomes.59 However, this
assumption has not been tested and is an important area of future research.
Experiences Leading to Trust or Distrust
Patients who perceive positive characteristics in their providers (such as being thorough,
understanding, responsive, and respectful) are more likely to seek treatment and heed
medical advice.60 Patients with higher levels of trust report improved satisfaction in the
patient–provider relationship and patients with lower levels of trust report lower levels of
satisfaction.61 A study by Thom et al. found that patients with low levels of trust in their
providers were substantially less likely than those with higher levels to report that they
intended to adhere to their physician’s advice, and more likely to say they did not receive
the services they requested or needed.62 When providers deny patients’ requests for tests or
treatment, patients’ trust in their physicians may be eroded.63 Bell et al. found that patients
who felt their expectations for care had not been met reported less satisfaction with their
visits, less improvement in their health conditions, and weaker intentions to adhere to
treatment, compared with patients who felt their expectations had been met.64
Collaboration and satisfaction in patient–provider relationships are associated with patients’
participation in their care, fewer appointment cancellations and no-shows, and improved
outcomes.65
Racial and ethnic differences in patient trust. Several recent studies found low levels of
patient trust and satisfaction among racial and ethnic minorities.66 In a study of the
foundations of mistrust in physicians, Schnittker found that people of lower
socioeconomic status and members of racial and ethnic minorities said their physicians
were less responsive and they were less trusting of their physicians compared with those of
higher socioeconomic status and non-minority patients. In a study by LaVeist et al., both
African American and white patients reported substantial mistrust of the medical system,
yet African Americans were significantly more likely than white patients to report mistrust
10
across all measures. In this study, African American patients were more likely than
whites to report racial discrimination as playing a factor in access to care. Those who
perceived more racism and felt more mistrust of the medical system reported less
satisfaction with care.
Using data from a nationally representative sample of adults, Hunt et al. found that
the restrictiveness of an individual’s health plan did not explain why some minority groups
were less satisfied with their care.67 African Americans and Latinos were less trusting and
less satisfied with their physicians than whites regardless of their health plan characteristics.
Other studies have found that Latinos and African Americans were less satisfied than
whites were with their care and health plans. Weech-Maldonado et al. also found that
Asians and Pacific Islanders had lower levels of satisfaction with their care and health plans
than did whites.68 In a study looking at patients’ preferences for initial care by specialists,
Wong et al. found that blacks and Asian patients had the least trust and the lowest ratings
of specialists and were much less likely to prefer a specialist than were whites.69
Only a few studies have looked at the underlying causes of patient dissatisfaction
and mistrust, particularly among racial and ethnic minorities.
Organizational factors that affect patient trust. Some studies consider how the
organization and delivery of medical care affect patient–provider relationships and patient
trust and satisfaction. One study found a significant decline in the quality of patient–
physician interactions between 1998 and 2000, as reported by Medicare beneficiaries.70
Respondents reported “less thorough discussions about their problems and symptoms,
greater difficulty reaching their doctor by phone for medical advice and in seeing the
doctor when sick, and interpersonal treatment that felt less caring and more rushed.” A
study of low-income, mostly African American women demonstrated that primary care
offices that were accessible (e.g., through long hours, short waiting times for
appointments, easy telephone contacts, and ample time for individual appointments) and
offered continuous and coordinated care (by assigning patients to the same clinicians and
helping to coordinate specialty services) were associated with strong patient–provider
relationships. Respondents who described their delivery sites as accessible and as ones that
offered continuous and coordinated care were more likely than those who did not to say
they had high levels of trust in their physicians.71
Hsu et al. found that patients who were allowed to select their primary care
providers (PCPs) were more likely to retain their providers after one year and reported
greater overall satisfaction with them, compared with patients who did not have such a
11
choice.72 In addition, patients who were allowed to choose their providers were more
likely than those who were not allowed to do so to: follow their providers’ advice, say
their provider offered the best medical care, believe their provider thought the same way
as they did, and believe their provider was well qualified and knew them well. Such
patients also reported that their PCP created less of a barrier to obtaining care with
specialists or prescription medications.
Hunt et al. found evidence that enrollment in a tightly managed health
maintenance organization (HMO) was significantly associated with patients’ reporting
lower levels of trust in their physicians, compared with enrollment in a preferred provider
organization (PPO).73 The researchers also found that enrollment in a capitated HMO
plan was significantly associated with lower levels of patient satisfaction, compared with a
PPO plan. These findings are important, because racial and ethnic minorities are more
likely than whites to be enrolled in restrictive, tightly managed health care plans.74
Patient trust and health care utilization. The literature exploring the causes of patient
mistrust among racial and ethnic minorities includes primarily small, qualitative studies of
special populations. Nevertheless, these studies provide some insight into the factors that
increase or decrease patient trust among racial and ethnic minorities, and the effects of trust
on patient satisfaction and health care utilization.75 A study of low-income, mostly minority,
prenatal and postpartum women found that patient trust is closely associated with a provider’s
behaviors. This study found that patients’ perceptions of a provider’s competence were
closely associated with their interpersonal skills and expressions of caring.76 Three
qualitative studies of battered, minority women point to the importance of providers’
interpersonal skills in promoting positive relationships with their patients, and to the role
of trust in encouraging women to seek help to address their partners’ violence.77 In
particular, study participants identified provider behaviors such as compassion,
understanding, accessibility, confidentiality, shared decision-making, and communication
as adding to patient trust in providers and encouraging them to seek help for abuse.
Patient preferences, racial concordance, and trust. Studies show that racial and ethnic
disparities in care can be partially explained by minority patients’ preferences for care.
Some studies found that African Americans are less likely than white patients to prefer
certain treatments such as renal transplantation or invasive cardiac procedures.78 In a study
of patients’ preferences for initial care, Wong et al. found that African Americans and
Asians were less likely than whites to prefer initial care by a specialist in both hypothetical
situations (i.e., when presented with a hypothetical scenario) and when asked about actual
health problems. In addition, patients who were older and had more confidence in their
12
PCPs were less likely than younger patients or those with less confidence in their PCPs to
prefer initial treatment by specialists.79
In a study of doctor–patient racial concordance, Laveist and Nuru-Jeter found that
respondents from various racial/ethnic groups, when given a choice among physicians,
were more likely to select a physician of their own race or ethnicity than to select a
physician of a different race/ethnicity.80 Respondents who had physicians of the same
race/ethnicity reported greater satisfaction with their physicians compared with
respondents who were not race concordant with their physicians. This was true across
racial and ethnic groups. The study did investigate why patients tend to choose a physician
of their own race/ethnicity or whether racial concordance was associated with higher
levels of patient trust.
In a study of racial concordance between HIV-positive patients and their providers,
King et al. found that African American patients of white providers received protease
inhibitors much later than did white patients of white providers or African American
patients of African American providers.81 This study did not provide sufficient information
to explain this difference. While it is possible that varying treatment times were the result
of provider discrimination, it is also possible that lower levels of trust and satisfaction
among African American patients in racially discordant patient–physician relationships
influenced their willingness to try new therapies. Further research is needed to understand
why patients prefer providers of the same race or ethnicity and to explore the effects of
such racial concordance on access to care, quality of care, and health outcomes.
In addition, further research is needed to explore the root causes of Asian, Latino,
and African American patients’ mistrust of physicians. In addition, research is needed to
better understand the degree to which patient mistrust is provider-driven (e.g., through
discrimination or bias), structural (e.g., due to the organization and delivery of health
care), or patient-driven (e.g. due to patient expectations and health beliefs). Furthermore,
research is needed to explore whether differences in levels of trust among racial and ethnic
minorities, compared with whites, could result from inadequate measures (e.g., poor
translations or measures that are not culturally appropriate). Future studies should evaluate
existing measures of patient trust and should be conducted in languages other than English
and should explore the associations among age, education, socioeconomic status,
acculturation, and patient trust among racial and ethnic minorities. A better understanding
of the root causes of patient mistrust is crucial to developing strategies to increase trust and
thereby improve health outcomes.
13
Experiences of Discrimination
While research uncovers inequalities in terms of access to and availability of health services
as well as care among racial and ethnic minorities, compared with white patients, the
reasons for these inequalities have not been definitively determined. For example, there is
a large body of literature documenting racial differences in the treatment of cardiovascular
disease.82 Other studies have found racial differences in rates of lung cancer surgery and
immunizations.83 In addition, greater morbidity and mortality from HIV have been
observed among African American patients than whites.84 Some studies have found that
racial and ethnic minorities perceive more racism in the medical care system and tend to
be less satisfied with their health care and their health care providers than white patients.85
As described above, patients’ attitudes toward health providers and health care institutions
affect their willingness to seek medical care, undergo treatments, and adhere to
recommended care.86
While some studies have speculated that racial bias or discrimination in the practice
and delivery of health care is at least partly responsible for racial and ethnic health
disparities, more research on this issue is needed.87,88,89 In particular, further research is
needed to improve our understanding of the consequences of discrimination (or perceived
discrimination) for patients’ health. Some studies have found that perceived discrimination
is associated with negative health outcomes, in addition to lower health care satisfaction
and treatment adherence. For example, Thornburn et al. found that many HIV-positive
patients have experienced discrimination in getting treatment for HIV, and that such
racially and socioeconomically based discrimination was associated with higher rates of
depression and post-traumatic stress symptoms, greater severity of AIDS-related symptoms,
and lower perceived general health.90 However, too few studies have looked at this issue,
and existing studies are limited by small sample sizes, cross-sectional designs, and the use of
discrimination measures that have not been adequately evaluated.
To explore the health effects of perceived discrimination, studies need reliable and
valid measures that can be feasibly used in large-scale, population-based studies. Krieger et
al. set out to fill this gap by investigating the psychometric properties of a short self-report
instrument called the “Experiences of Discrimination” (EOD) measure.91 In this study, the
EOD was tested on a sample of black, Latino, and white adults in the Boston area. The
results yielded evidence in favor of the reliability and validity of the nine-item EOD scale
and showed that single-item discrimination measures were less reliable than, and had low
correlations with, multi-item measures. These findings provide support for use of the
EOD to assess perceived discrimination among African Americans and Latinos.
14
The Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys
are designed to assess patients’ health care experiences in a variety of settings.92 A six-item
measure of perceived discrimination adapted from items used in the Commonwealth Fund
2001 Health Care Quality Survey was evaluated as part of a field test of the CAHPS
American Indian survey conducted in 2005.93 Analyses were conducted to examine survey
response rates, items missing data, and the reliability and validity of the survey. The overall
survey findings are encouraging in terms of the quality of the data collected, and
psychometric analyses provided strong support for the reliability and validity of the survey,
but the discrimination items did not coalesce into a homogenous scale (item-scale
correlations tended to be low).94
Linguistic Competence
The National Center for Cultural Competence defines linguistic competence as:
The capacity of an organization and its personnel to communicate effectively,
and convey information in a manner that is easily understood by diverse
audiences including persons of limited English proficiency, those who have
low literacy skills or are not literate, and individuals with disabilities.95
Racial and ethnic minorities are disproportionately affected by communication barriers
associated with LEP and low health literacy.
Health literacy. Healthy People 2010 defines health literacy as the “degree to which
individuals can obtain, process, and understand the basic health information and services
they need to make appropriate health decisions.”96 Health literacy is not limited to reading
and writing; it also includes speaking and listening skills. As such, people with low health
literacy tend to have problems with both written and oral communication.97
According to the 1992 National Adult Literacy Survey, half of U.S. adults have
limited or low literacy skills.98 In a meta-analysis of studies on health literacy, Paasche-
Orlow et al. found that the prevalence of low and marginal health literacy was 46 percent.
Low health literacy was significantly associated with level of education, ethnicity, and age.99
Individuals with low health literacy are less likely than those with adequate health
literacy to understand their disease, possess skills to manage their own conditions, and use
preventive health care services.100 In addition, individuals with low health literacy have
lower rates of adherence to recommended treatments, are more prone to experience medication
errors, and are more likely to have poorer health status and worse health outcomes.101
15
The mechanisms by which poor health literacy affects health outcomes are not
clear.102 However, it is likely that poor patient–provider communication may be a
mediating factor. Research has generally found that individuals with low health literacy
have more difficulties understanding health information.103 Schillinger et al. found that,
compared with diabetic patients with adequate health literacy, diabetic patients with low
health literacy were more likely to report worse communication in the domains of general
clarity, explanation of conditions, and explanation of processes of care.104 Communication
barriers can affect all aspects of health care encounters, from history-taking to explaining
diagnoses and treatments.
Physicians’ use of medical terms and the speed with which they transmit
information may cause communication problems. Such problems may be exacerbated by
the fact that patients with low health literacy tend to have passive communication styles.105
Patients with low health literacy may be hesitant to disclose their problems to their
providers or unwilling to admit they do not understand their physicians. Furthermore,
they may lack the vocabulary to phrase their questions.106 Communication barriers may
arise when individuals with low health literacy attempt to understand medical forms and
instructions, which are usually written at high school reading level or higher.107 This
includes informed consent and insurance forms, prescription labels, and medication
package inserts.
Such communication problems may be exacerbated by the current health care
environment, in which physicians have little time for providing information or
explanations. Indeed, the American Medical Association concluded that “physicians are
not successful in communicating essential health care information to their patients,
particularly to those with inadequate health literacy.”108 Often, providers are unaware of
the communication needs of their patients and do not tailor their communication styles to
fit patients’ needs.109 Providers should be encouraged to look for clues of limited literacy
skills. For example, patients may make excuses to avoid reading something (e.g., they have
forgotten their reading glasses or will read it when they get home), fill out forms
incompletely or inaccurately, or bring family members along to office visits.110
Although educational level can be a marker for low literacy, it is not strongly
correlated with literacy skills.111 Therefore, it is recommended that providers formally
assess the health literacy of their patients. Common instruments to assess literacy levels
include the Rapid Estimate of Adult Literacy in Medicine, the Test of Functional Health
Literacy in Adults (TOFHLA), a shortened version of TOFHLA, and the Wide Range
Achievement Test (WRAT).112 The only health literacy measure for Spanish-speaking
16
patients that has been evaluated psychometrically is the TOFHLA, and further research is
needed to evaluate the performance of the shortened version of TOFHLA among Spanish
speakers.113 Research is also needed to evaluate these health literacy assessments among
other non-English speakers, especially Asians.
Several strategies have been suggested as ways for providers to improve their oral
and written communication with patients who have low health literacy, as follows: 114
• Reduce the content of discussions to what patients really needs to know; for
example, discussing how to manage a chronic disease as opposed to the disease’s
pathophysiology.
• Avoid use of medical jargon and instead, use commonly understood words.
• Use audiovisual aids to supplement oral and written instructions, such as diagrams
and pictures or short audio or videotaped instructions.
• Include interactive instructions by making patients do, write, say, or show
something to demonstrate their understanding. For example, ask patients to “teach
back” by repeating or restating the instructions as the patient might tell a friend.
• Test the readability of educational materials. Write materials at a sixth-grade
reading level or lower.
• Pretest materials to evaluate whether they are suitable for the intended audience.
Most studies examining the effectiveness of such communication strategies have
focused on their impact on patients’ knowledge, health behavior, biochemical markers,
measures of disease incidence, and use of preventive services.115 To date there have been
no studies examining the impact of communication strategies on health care service use or
health outcomes. The authors’ literature review found only five studies that used a
controlled research design to assess the impact of communication strategies by literacy
level, and these were limited to studying knowledge outcomes. For example, Michielutte
et al. compared the effects on patients’ knowledge of an illustrated brochure on cervical
cancer and a brochure using bulleted text only. The study found that patients with low
health literacy scores understood the illustrated materials better than the text-only
version.116
Limited English proficiency. According to the 2000 census, approximately 47 million
people in the U.S. speak a language other than English at home and over 21 million are
limited English proficient (LEP)—the term used by the U.S. Department of Health and
17
Human Services Office of Civil Rights to refer to people that have poor or no English
skills.117 Previous research has shown that LEP patients have worse access to care and give
poorer ratings of their care than English-speaking patients.118 Strategies used to surmount
language barriers include: bilingual providers who are proficient in the patient’s language
(often referred to as language-concordant encounters); in-person, third-party
interpretation, using dedicated, trained professional interpreters or ad-hoc interpreters,
such as patient’s family members, friends, or clinic staff; and remote, third-party
interpretation using technology.119
A nationally representative survey in 2001 found that only 49 percent of Hispanic
adults who said they needed medical interpretation always or usually got an interpreter.120
Of those who used an interpreter, 55 percent of patients worked with an ad-hoc staff
interpreter, 43 percent relied on a family member or friend, and only 1 percent had a
trained, dedicated medical interpreter. A 2003 survey in California found that, among
non-English-speaking patients who did not have a doctor who spoke their native
language, most (56%) did not rely on interpreters but rather did “the best they can in
English.”121 Only 9 percent had professional interpreters, while 15 percent used ad-hoc
interpreters and 19 percent depended on family members or friends for translation.
Language-concordant encounters. Language-concordant encounters result in better
communication, interpersonal processes, and health outcomes than language-discordant
encounters. Bilingual providers who can speak directly to their patients may develop
better rapport with them.122 Seijo et al. found that Spanish-speaking patients who saw
bilingual physicians asked more questions and had greater information recall of their
physician’s diagnosis, treatment, and recommendations than Spanish-speaking patients
who saw a monolingual (English-speaking) physician.123 Wilson et al. found that, among a
multilingual population, LEP patients with language-discordant physicians were more
likely to report problems understanding a medical situation than LEP patients with
language-concordant physicians.124 Finally, Perez-Stable et al. found that patients with
diabetes and hypertension reported better health outcomes when their physician spoke
their native language.125 One limitation of these studies was that, when considering
language-discordant encounters, they did not differentiate between interpreted and noninterpreted
encounters.
Studies comparing language-concordant encounters with interpreted encounters
have shown that patients in language-concordant encounters have better experiences with
care. For example, studies indicate that language-concordant encounters can result in
patients having a better understanding of their condition.126 Compared with language18
concordant encounters, patients communicating through an interpreter rated their
providers as less friendly, less respectful, less concerned for them as a person, and less likely
to make them feel comfortable.127 These studies did not distinguish between the types of
interpreter services available.
Interpreter services. The limited supply of bilingual providers has led health care
organizations to use interpreter services to bridge language gaps. Research has shown that
language-discordant patients report better experiences with care in interpreted encounters
than in non-interpreted encounters. Work by Baker et al. found that interpreter use
among Spanish-speaking patients led to greater understanding of their disease and
treatment.128 Spanish-speaking patients who communicated directly with their providers
but thought an interpreter should have been called were less satisfied with their provider’s
friendliness, concern, efforts to make them feel comfortable, and the amount of time spent
with them, compared with patients who had language-concordant encounters and those
who used an interpreter.127
When examining the impact of language services, it is important to distinguish
between professional interpreters and ad-hoc interpreters. Availability of professional
interpreters may reduce barriers to care among LEP patients. Jacobs et al. found that
professional interpreter services offered by a managed care organization increased the use
of clinical and preventive services among Portuguese- and Spanish-speaking patients.129
Tocher and Larson reported that the quality of care for diabetic LEP patients was as good,
if not better, than for their English-speaking counterparts when professional interpreter
services were available.130 The availability of staff interpreters has been shown to improve
compliance with follow-up appointments and overall satisfaction.131
Several studies have found communication problems with the use of ad-hoc
interpreters. Although such interpreters are bilingual, they are not formally trained as
interpreters and may lack appropriate knowledge of health-related terminology. As a
result, patients may receive insufficient information about potential side effects and be less
satisfied generally with their care.132 Elderkin-Thompson et al. reported that translation
errors occurred frequently when untrained nurse interpreters were used—approximately
half of the encounters observed had serious miscommunication problems that affected the
physician’s understanding of the patient’s symptoms and concerns.133 Flores et al. found
that, compared with errors committed by professional interpreters, errors committed by
ad-hoc interpreters were more likely to be errors of clinical significance.134 Finally, several
studies in a variety of different settings found significantly higher quality of patient–
19
physician interactions when professional interpreters were used instead of ad-hoc medical
staff or patients’ friends or family members.135
In addition to the potential for the problems discussed above, use of family members
or friends as translators may result in them filtering information to reduce emotional
distress for the patients.136 Furthermore, relaying medical information can be burdensome
on family members or friends—particularly children—and may lead to patient dependency
and passivity.137 There may be certain advantages to using adult family members as
interpreters, including their ability to offer support, help remember details, encourage
adherence to treatment, and increase knowledge in the family.138 Some studies have found
similar levels of patient satisfaction with professional and family member/friend translators,
while other studies indicate that patients prefer professional interpreters.139
Professional interpreter services may be in-person or remote. Remote interpreter
services rely on telephones, video links, or other systems. Some remote interpreter services
offer simultaneous interpretation through wireless headsets, based on the model in use at
the United Nations. One limitation of remote systems is that the interpreter cannot
capture non-verbal communication cues.140 Studies contrasting in-person and remote
interpreter services have had mixed results. Kuo and Fagan found that patients using
professional in-person interpreters were more satisfied than those using telephone
interpreters.141 On the other hand, Hornberger et al. found that remote-simultaneous
interpretation was more accurate than in-person interpretation, and Spanish-speaking
parents reported a significant preference for this interpretation style.142 One limitation of
this study was that training was provided only to the remote-simultaneous interpreters and
not to the in-person interpreters.
There is wide variation in the quality of interpreter services. Interpretation should
include proficiency in both languages, mastery of medical terminology in both languages,
memory skills, ability to negotiate a three-way conversation, and basic knowledge of
cultural aspects that can influence health. Moreover, bilingual providers should be
proficient in the target language, including knowledge of medical terminology.143 There
are currently no minimum requirements for medical interpreter training programs, but the
National Council on Interpreting in Health Care recommends at least 40 hours of
instruction on medical terminology, interpreting skills, ethical issues, role playing, and
cultural awareness.144
20
DISCUSSION
Our review of the literature demonstrates the importance of culturally competent, patientcentered
care to patient satisfaction, adherence, and outcomes. From the patient’s
perspective, the patient–provider interaction is a key, if not the primary, component of
quality medical care.
Yet, multiple studies in multiple settings have found that racial/ethnic minority
patients as well as those with low socioeconomic status or LEP report worse experiences
of care, compared with whites, those with higher socioeconomic status, and English
speakers. The causes of these health disparities remain unclear: they may result from bias
on the part of the providers, differences in patients’ expectations, or miscommunication
across biomedical or cultural divides.145 Organizational factors—such as the lack of
continuous care and pressure on providers to work quickly—may further erode the quality
of patient–provider interactions. Indeed, research has suggested that the pressure on
providers to make decisions in short periods of time may contribute to stereotyping of
patients.146
Given current knowledge, how can we improve the cultural competency of
providers and organizations? Incorporating the patient’s perspective into current quality
improvement efforts is an important step. The authors have identified five domains of care
that are best identified and measured “through the patient’s eyes.”
Patient–provider communication can be affected by such factors as differences in verbal
and non-verbal communication styles and explanatory models of illness and disease. Some
disparities in use of provider services emerge after the patient gets to the provider (in the
context of patient–provider interaction) rather than just difficulties in getting to the
provider, demonstrating that patient–provider communication is not unidirectional: just as
providers can influence patient behaviors, patients can influence provider behavior. For
example, if clients consistently demonstrate an in-ability to understand provider
instructions, the provider must make an effort to modify the means used to communicate
these instructions, such as illustrations or the adoption of terms and phrases that are
commonly used by that client’s group.
In terms of shared decision-making and respect for patient preferences, the authors found
that: 1) patient-centered care requires effective patient–provider partnerships and shared
decision-making among clinicians, patients, and families; 2) providers should work with
patients to select interventions that reflect patients’ values, weighing available treatments
with patient preferences; and 3) shared decision-making is influenced by the unique
21
characteristics of providers and patients, though there is a dearth in the understanding of
how this plays out. Focused, formative research is needed to examine patient–provider
relationships. Then, outcome-based interventions are needed to evaluate findings from the
formative research process.
In terms of experiences leading to trust or distrust, the authors found that: 1) patients
consider their provider’s interpersonal characteristics essential to competent care and take
them into consideration when determining the quality of the care they receive; 2) shared
decision-making between patients and providers is unlikely to occur without mutual trust;
3) patient participation in care is associated with greater collaboration and increased
satisfaction on the part of patients; and 4) few studies have looked at the underlying causes
of patient dissatisfaction and distrust among racial and ethnic minorities. Studies examining
the factors that influence patient–provider relationships should be undertaken. In
particular, evidenced-based studies are needed to gauge the extent to which trust
influences patient–provider relationships.
In the fourth domain, experiences of discrimination, findings indicate that: 1) compared
with white patients, racial and ethnic minorities perceive more racism in the medical care
system, tend to be less satisfied with their health care, and have higher levels of distrust in
their health care providers; 2) the inequalities in access and availability of care among racial
and ethnic minorities have not been definitively explained; 3) further research on the role
of racial bias or discrimination in the practice and delivery of health care is needed; and 4)
reliable and valid measures that can be used in large-scale, population-based studies are
needed to understand the causes and health effects of perceived discrimination.
For the fifth domain of care, linguistic competency, the authors examined
communication strategies for individuals with LEP and low health literacy. They found
that: 1) low health literacy is an important communication barrier, especially among
racial/ethnic minorities; 2) low health literacy can have consequences for health care
utilization, adherence to medical regimens, and ultimately health outcomes; 3) there are
different strategies for providers to improve their oral and written communication with
low health literacy patients; and 4) providers must be cognizant of their patients’ health
literacy needs so they can adapt their communication styles.
With respect to LEP patients, the authors found that: 1) the majority of LEP
patients in the U.S. still lack access to language services; 2) access to language services can
help improve LEP patients’ experiences with and access to care; 3) language-concordant
encounters result in better communication, interpersonal processes, and outcomes than
22
language-discordant encounters; and 4) language concordance between patients and
providers, as well as interpreting by trained professionals, are the most effective strategies
for communicating with LEP patients.
IMPLICATIONS
It is important for all sectors of the health care system to continuously monitor their own
patient populations with regard to the five domains of culturally competent care. In
addition, evaluations of cultural competency should be incorporated at all levels of care.
This should include cultural competency training and assessment of all people who are the
points of contact for clients, such as front-desk staff, providers, and others. Obtaining
patients’ perspective will provide thorough and in-depth knowledge of how to make
improvements. It is also critical that providers seek to understand the community and
socio-cultural environments that influence patients’ beliefs about illness and disease, as well
as the values that patients assign to various elements of the health system.
Recommendations for Providers and Health Systems
Patient–provider communication. The authors recommend that health care providers
and health systems continually monitor their patient populations through quantitative and
qualitative data collection methods. Specifically, data collection should include patients’
race/ethnicity, socioeconomic status, and linguistic abilities. Intake forms should be
modified to include questions regarding health literacy, English proficiency, language
spoken at home, and use of complementary and alternative medical practices.
Shared decision-making and respect for patient preferences. Providers should work with
patients to select treatments that take into account patients’ health-related values, weighing
available treatment options and patient preferences. To do so, they should adopt strategies
to determine patients’ explanatory models of common diseases. The health system should
implement policies to democratize the decision-making process among patients, their
families, and providers. Policies should also recognize the rights of health consumers to use
community-based agencies and programs in addition to conventional medical facilities.
Experiences leading to trust or distrust. It is important to evaluate the factors that affect
patients’ trust in their providers. Such factors may differ by racial/ethnic populations as well
as socioeconomic and insurance status. Providers should seek to create open channels of
communication and empower patients to speak up about issues affecting their trust.
Experiences of discrimination. Providers must be aware that racial and ethnic minority
patients might perceive discrimination or bias in the health care system. Specific
23
complaints of discrimination should be investigated and structural, system-wide changes
and improvements should be sought. Patients should be given opportunities to voice their
concerns about discrimination. Providers and health systems should use a modified version
of the “Experiences of Discrimination” measure for quality improvement purposes.
Linguistic competence. Health plans and providers should assess the health literacy and
language needs of their patient population, and adopt strategies that will improve their
written and oral communication with patients. The Joint Commission on Accreditation of
Healthcare Organizations (JCAHO) and National Committee for Quality Assurance
(NCQA) should require hospitals and health plans to collect data on their patients’ health
literacy and English proficiency as part of the accreditation process. Patient assessments of
care such as the CAHPS surveys should include dimensions related to communication
barriers for patients with low health literacy and limited English proficiency. Policymakers
should make health literacy assessments available in languages other than English and Spanish.
Insurers and policymakers should offer incentives for health care providers to
create services that improve care for patients with low health literacy and/or limited
English proficiency. Providers and health care systems should avoid the use of ad-hoc
interpreters to communicate with LEP patients, and instead rely on trained bilingual staff
and professional interpreters. Health plans and providers must monitor and assess the
quality of interpreter services.
Finally, medical schools and other health professional schools should incorporate
issues pertaining to communication with patients who have low health literacy and/or
limited English proficiency into their curricula. Medical schools should seek to increase
recruitment and retention of bilingual students.
Recommendations for Applied Research
Patient–provider communication. Research is needed to examine factors that influence
patient–provider interactions among diverse racial/ethnic groups. Further research is
needed to investigate the roles that patient navigators/coaches, community health
workers, parish nurses, interpreters, and case managers might play in influencing patient–
provider communication.
Respect for patient preferences and shared decision-making. Research is needed to
investigate the association between patients and providers’ race/ethnicity and their
treatment preferences. It is also important to examine what happens when patients and
providers disagree on treatment options. More research is needed to determine how
24
patients’ disclosure of their use of complementary or alternative medicine affects patient–
provider interactions. Finally, research is needed to examine the use of lay health workers
or other “cultural communicators” as facilitators to enhance the shared decision-making
process and improve the desired outcomes of the encounter.
Experiences leading to trust or distrust. Further research is needed to understand why
some patients prefer to be race concordant with their providers, and to gauge the effects of
racial concordance on access to care, quality of care, and health outcomes. Research is also
needed to explore and understand the root causes of distrust in providers, particularly
among Latino and African American patients, for which studies conducted in different
health care settings have yielded contradictory results. Finally, there is a need to explore
whether differences in levels of trust of providers among racial and ethnic minorities,
compared with whites, result from past experiences with the medical system or varying
expectations.
Experiences of discrimination. More research is needed to determine the placement of
responsibility (e.g., on providers, staff, or others) for discrimination in health care settings
and the characteristics of patients or providers/staff members associated with incidents of
reported bias. In addition, understanding the consequences of perceived discrimination or
bias on health is an important next step for future research. It should be possible to modify
the “Experiences of Discrimination” measure to evaluate health encounters.
Linguistic competence. More research on the mechanisms through which low health
literacy and limited English proficiency may affect health outcomes is needed. It is also
important to consider the implications for the health care system of patients who have
both low health literacy and limited English proficiency.
Further research is also needed to assess the impact of various communication
strategies on low health literacy patients, considering effects on health-related knowledge,
compliance with care regimens, and health outcomes. It is also important to examine the
reliability and validity of health literacy assessments that have been translated into
languages other than English.
For patients with limited English proficiency, it is important to evaluate various
translation methods, for example considering the cost-effectiveness of remote versus inperson
professional interpreter services or the appropriateness of using family members as
interpreters.
25
Incorporating Patients’ Perspectives of Cultural Competence into
Quality Measures
To measure and improve care, it will be important to incorporate patients’ perspectives of
cultural competence into existing measures of health care quality. In October 2005,
NCQA and U.S. News & World Report collaborated to rank hundreds of commercial,
Medicare, and Medicaid health plans.147 The NCQA is a private, nonprofit organization
that accredits and certifies a range of health care organizations. NCQA’s accreditation
program is voluntary; participating health plans submit information about member
satisfaction and clinical performance. Two of the five areas used to rank health plans were
access to care and communication with doctors. “Access to care” takes into account
patients’ reports of their experiences with getting needed care, getting care quickly, and
health plan customer service. “Communication with doctors” includes patients’ perceptions
on how well doctors communicate, as well as patient ratings of their personal doctor or
nurse, the specialist seen most often, and the overall health care received. These areas were
assessed using the CAHPS health plan survey version 3.0.
It would be possible to include additional survey questions to assess a health plan’s
cultural competency, at least from the patient’s perspective. For example, the authors
recommend that all health plans, including Medicare and Medicaid plans, routinely collect
the following socio-demographic data from their members: 1) race and ethnicity;
2) education; 3) preferred language; 4) English-language proficiency; 5) health literacy
level; and 6) acculturation level, or degree of assimilation to mainstream American culture.
It would also be important to ask patients about the race/ethnicity of their personal doctor
or nurse and the language spoken during most health encounters. For patients with limited
English proficiency, additional questions could be asked about the language services
available to them and about the quality of interpreter services. Furthermore, patients could
be asked whether they share in the decision-making process with their providers, given
the importance this holds for their adherence to recommended treatments. Given the
widespread use of CAM among all population groups, including whites, it is also
important to determine if providers are asking patients about their use of CAM. Additional
questions about trust and discrimination would provide understanding about patients’
experiences in these areas. Table 1 shows the cultural competency domains discussed in this
report and indicates whether there are existing CAHPS survey questions to solicit patients’
perspectives on these domains of care.
26
Table 1. Comparisons of Diverse Patients’ Health Care Experiences and
Quality of Care Domains Covered by the CAHPS Instruments*
Quality Domains
Diverse Patients’
Health Care Experiences
CAHPS
Questions
Patient–Provider Communication
􀂾 How Well Providers
Communicate
􀂾 How Well Providers
Understand and Respect
Patients’ Explanatory Models
of Illness and Disease
• Providers listen carefully.
• Providers explain things in a way
that is easy to understand.
• Providers spend enough time.
• Providers discuss patients’ health
beliefs and practices in a nonjudgmental
manner.
• Providers can communicate about
non-conventional or complementary
and alternative medical practices.
• Providers find common ground
between biomedical view of disease
and patients’ perspectives on their
illness.
YES
YES
YES
NO
NO
NO
Respect for Patients Preferences/
Shared Decision-Making
• Providers and staff show respect and
treat patients with dignity.
• Providers and staff display empathy
and show emotional support.
• Providers discuss pros and cons of
treatment options.
• Providers allow patients and family to
have a voice in treatment decisionmaking.
YES
NO
YES
YES
Experiences Leading to Patient
Trust or Distrust in Health Care
Systems and/or Providers
• Health Care staff treated patients in a
way that led to distrust.
• Providers treated patients in a way
that led to distrust.
• Patient had experiences with denial of
services that led to distrust.
• Patient had experiences with denial of
payment that led to distrust.
NO
NO
NO
NO
Experiences of Discrimination • Providers or staff treated patients with
disrespect because of patients’
racial/ethnic backgrounds.
• Providers or staff treated patients with
disrespect because of patients’
insurance status.
• Providers or staff treated patients with
disrespect because of patients’ ability
to speak English.
NO
NO
NO
27
Quality Domains
Diverse Patients’
Health Care Experiences
CAHPS
Questions
Linguistic Competence
􀂾 Effective Communication for
Individuals Who Have Low
Health Literacy Skills
􀂾 Effective Communication for
Individuals Who Have
Limited English Proficiency
• Providers and staff use plain language
and not medical jargon.
• Providers and staff provide written
health-related information that is easy
to understand.
• Providers and staff provide nonwritten
patient education materials
such as pictures, models, and
videotapes.
• Providers and staff give patients small
amount of information and repeat
information until patients understand.
• Providers and staff make patients feel
comfortable asking questions and
allow time for questions.
• Patients are able to make
appointments using the language they
are most comfortable with.
• Patients have access to professional,
culturally appropriate interpreters at
the time of visit.
• Interpreters are available at the
appropriate time and spend enough
time as needed.
• Gender-concordant interpreters are
available for sensitive issues.
• Interpreters provide accurate and
complete translations.
• Interpreters treat patients with
courtesy and respect.
• Written and non-written healthrelated
information is provided in the
patients’ native language.
NO
YES
NO
NO
NO
NO
NO
NO
NO
NO
NO
NO
* Some CAHPS surveys may include questions that partially cover these domains. Domains that are not covered, or
have limited coverage, have been designated as “NO.”
In collecting such data, it would be important for health plans to address any
methodological issues inherent in the survey design and sampling process. Often, problems
with data collection processes lead to under-representation of low-income, LEP, and low
health literacy patients, resulting in a sample skewed toward populations with higher
socioeconomic status—excluding patients who are most at risk.148
28
Efforts such as the collaboration between the NCQA and U.S. News and World
Report are important ways to give health consumers more information about health care
quality. The authors recommend going a step further to include patient reports and ratings
that will enable evaluations of the cultural and linguistic abilities of a health plan and its
providers. Improving patient–provider communication, shared decision-making, and trust
are quality issues that affect all patients—not just racial/ethnic minorities or patients with
low socioeconomic status. However, the lack of patient-centered care may affect certain
vulnerable populations disproportionately. Incorporating patients’ views on cultural
competency and linguistic services into current quality measures will provide important
information and give health plans and providers opportunities for improvement.
29
NOTES
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