SYNTHESIS OF EVIDENCE SUBSTANTIATING POTENTIAL INTERVENTIONS

A Systematic Review of Barriers and Facilitators to
Minority Research Participation Among African
Americans, Latinos, Asian Americans, and Pacific Islanders

To assess the experienced

or perceived barriers and

facilitators to health research

participation for major US

racial/ethnic minority popu-

lations, we conducted a sys-

tematic review of qualitative

and quantitative studies

from a search on PubMed

and Web of Science from

January 2000 to December

2011.

With 44 articles included in

the review, we found distinct

and shared barriers and fa-

cilitators. Despite different

expressions of mistrust, all

groups represented in these

studies were willing to par-

ticipate for altruistic reasons

embedded in cultural and

community priorities.

Greater comparative un-

derstanding of barriers and

facilitators to racial/ethnic

minorities’researchparticipa-

tion can improve population-

specific recruitment and

retention strategies and

could better inform future

large-scale prospective quan-

titative and in-depth ethno-

graphic studies. (Am J Public

Health. 2014;104:e16–e31.

doi:10.2105/AJPH.2013.

301706)

Sheba George, PhD, Nelida Duran, RD, MS, and Keith Norris, MD

THE IMPORTANCE OF RACIAL

and ethnic minority participation
in clinical research has been
well established including, but
not limited to, generalizability of
research findings,1,2 equity in
provision of health care,3,4 and
accuracy of ethnicity-specific
subgroup analyses.5,6 Despite
a series of national-level initia-
tives in the past 2 decades
from the National Institutes of
Health,7 the Federal Drug Ad-
ministration (FDA),8 and the
Centers for Medicare and Med-
icaid Services,9 racial and ethnic
minorities remain underrepre-
sented in clinical research.10,11

Racial/ethnic minorities consti-
tute more than 30% of the US
population, but enrollment by
race/ethnicity of National Can-
cer Institute publicly funded
cancer clinical trials (phase I—III
treatment studies, January 1,
2003, through June 30, 2005)
revealed that they represented
less than 18% of clinical trial
participants.12 Evelyn et al.
reported that racial/ethnic mi-
norities constituted only 17% of
FDA clinical trial participants in
185 studies of new molecular
entities over a 5-year period.13

Several barriers to participation
of racial and ethnic minorities in
clinical research have been iden-
tified for both researchers and
participants. For researchers, lack
of knowledge about the cultural
differences among ethnic minori-
ties can result in ineffective com-
munication strategies about health
research at all stages, including

recruitment, enrollment, and re-
tention. Because research has
historically been conducted by
White researchers and has tar-
geted mostly White research par-
ticipants, the “gold standards”
with regard to research processes
have tended to include incorrect
assumptions about effectiveness
when unquestioningly transferred
to ethnic minority populations.
For example, researchers’ inap-
propriate use of recruitment
strategies among racial/ethnic
minority groups that were devel-
oped for White participants and
lack of knowledge about how to
culturally and linguistically adapt
recruitment materials have been
noted concerns.1,14,15

Given the paucity of evidence-
based strategies and practices in
the literature regarding non-White
populations, recruitment of mi-
norities can require additional in-
vestments of time and resources
to learn what methods may work
in distinct communities to im-
prove community acceptance of
clinical research and thus improve
participation.14,16 Cultural and
linguistic adaptation of recruit-
ment strategies may include not
only the selection of appropriate
venues, methods, and topics of
focus when addressing the gaps in
knowledge about research among
a particular minority group14,17,18

but also the translation of mate-
rials into appropriate languages
and the implementation of such
strategies by culturally and lin-
guistically competent research
staff.19,20

In addition, many researchers
fail to facilitate culturally sensitive
and meaningful discussions about
informed consent to ensure truly
informed choices in the enroll-
ment process21,22 For example,
although obtaining consent from
a research participant is often
practiced as a 1-time occurrence,
research indicates that consent
should be considered an ongoing
process—a dialogue—rather than
a discrete act of choice that takes
place in a singular moment in
time, thus supporting participants
in making informed decisions
throughout the trial.23 Moreover,
among many culturally diverse
and immigrant populations, it
may be important to include fami-
lies and communities in a dialogue
around research participation de-
cisions because individual deci-
sions to participate in research are
frequently not independent of
family and community involve-
ment, benefits, and costs.2,24,25

Furthermore, once participants
have been recruited and enrolled
in studies, research success is more
likely if culturally informed reten-
tion strategies are used to engage
such populations in research.2,26,27

Some suggested strategies focus on
partnering with community orga-
nizations, including investigators
and staff from the same targeted
communities as participants and
retaining the same staff and in-
terviewers over time to ensure
continuity.20,28,29 Such efforts can
increase likelihood of greater rap-
port and trust building between
study staff and participants and

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improved adherence to study
protocol by participants.

For racial- and ethnic-minority
participants, the concerns have
ranged from psychosocial issues
such as mistrust, fear, and lack
of confidence to logistical con-
cerns including childcare, sched-
ule conflicts, lack of transporta-
tion, and appropriate support to
research-related factors such as
lengthy consent documents and
lack of adequate information
about clinical research.1,2,10,30

Several studies raise questions
about both overt and subtle forms
of racism and discrimination at
multiple levels that may lead to
barriers and the underrepresen-
tation of ethnic minority popula-
tions in health research.31—34

Barriers to minority participation
in health research resulting from
such racism can occur at different
levels, from institutional to inter-
personal to internalized levels
of racism.35

The continuing effects of slav-
ery and colonization at a systemic
institutionalized level have mani-
fested in ongoing health inequal-
ities through differential access to
health care and poor health out-
comes for racial/ethnic minorities
in the United States.35—37 The US
Public Health Services Syphilis
Study at Tuskegee (Tuskegee
Study) among African Americans
and efforts to sterilize American
Indians are some egregious ex-
amples of a dark history of sys-
tematic abuse and mistreatment
both in health care and medical
research for racial and ethnic mi-
norities in the United States.38—40

As a consequence, mistrust of
the medical establishment and
of medical research has been well
documented among minority
groups and continues to be a
formidable barrier to research
participation among these popu-
lations.1,31,32,41—43

Racism at the interpersonal
level is often manifested in prej-
udicial and discriminatory acts
resulting in poor health care ex-
periences and health outcomes
for racial/ethnic minorities.42,44—47

Poor mental and physical health
outcomes, delay or failure in
seeking preventive services and
treatment, and poor adherence
behaviors have all been associated
with reported experiences of dis-
crimination among racial/ethnic
minorities.46,48 Patients with such
experiences are also less likely to
participate in health research,
contributing to the overall lower
numbers of racial/ethnic minori-
ties in clinical research.27,49,50

Finally, at the level of internal-
ized racism, stigmatized popula-
tions accept negative messages
and stereotypes about their own
abilities and worth, resulting in
lower psychological health and
lower self-esteem, which can then
have a negative effect on health
practices and outcomes. Internal-
ized racism has been associated
with psychological and physiolog-
ical negative effects, ranging from
emotional distress and alcoholism
to increased risk of obesity, high
blood pressure, and high fasting
blood sugar.51—54 More relevant
to the current topic of minority
participation in research, internal-
ized racism can also adversely affect
the provider—patient relationship to
potentially impede communication
abilities of the patient, leading to
discounting of information from the
provider, delays, or failure to obtain
needed medical care and lower
levels of adherence.55

The same stereotypes and
negative messages internalized
by minorities may also shape
providers’ and health care orga-
nizations’ interactions with mi-
norities. For example, in the case
of African American women,
a range of socially constructed

stereotypical images of “mammy,
strong matriarch, welfare mother,
female overachiever, etc.” can
influence diagnoses and treat-
ment choices made for African
American female patients.56(p32)

Given that strong provider—patient
relationships have been shown to
be key to minority participation in
research,57,58 these deleterious ef-
fects of internalized racism on the
provider—patient relationships may
ultimately negatively affect deci-
sions of minorities to participate in
health research. Notwithstanding
these barriers, some studies have
suggested that minorities are not
necessarily less willing than
Whites to participate in clinical
research, especially in cancer
research studies.59,60

The literature on racial- and
ethnic-minority participation in
clinical research has burgeoned
over the past decade, gauging by
several systematic reviews on the
topic.1,10,15,30 However, most of
this scholarship has focused on
African Americans,10,41 in light of
a prevailing mistrust of clinical
research in the Black community
stemming from the historical abu-
ses associated with the Tuskegee
Study and related concerns of
ethical misconduct.61—63 There are
fewer studies that have included
a range of racial and ethnic pop-
ulations, resulting in less infor-
mation about the barriers and
facilitators to participation in
clinical research for a variety of
groups.10,41,64 A recent systematic
review of the literature on re-
cruitment interventions showed
that African Americans were the
most targeted group (82% of the
studies) and Latinos were also
likely to be targeted (46%), but
specific information on other mi-
nority groups was not included.15

Given the growing racial and eth-
nic diversity in the US population
and as Latinos are the largest

minority group and Asian and
Pacific Islander populations are
growing at a rate greater than any
other group, such multiethnic
analyses will become increasingly
important.65

The existing literature reflects
a trend of including 1 or 2 mi-
nority groups, but few studies
have compared across several
groups. An exception is a study
by Brown and Moyer who used
a nationally representative sam-
ple to compare predictors of
awareness of clinical trials and
feelings about the use of medical
information for research across
African American, Asian Ameri-
can, White, and Latino popula-
tions.66 The authors found that,
relative to the White population,
all other racial/ethnic minority
participants were less aware of
clinical trials and less positive
about the use of medical infor-
mation for research. Although
this study identifies who is likely
to participate in research, it does
not identify specific barriers and
facilitators for these different
groups.

In a similar way, a collaborative
research initiative entitled Project
MICRO (Minority Involvement in
Clinical Research Opportunities)
is a multi-institutional (University
of Hawaii, Charles Drew Univer-
sity, Morehouse College, Meharry
Medical College, University of
Puerto Rico), multicultural (West
Coast and Southern African
American, Mexican, Puerto Rican,
Filipino, Chinese, Pacific Islander,
Somali, White), multilingual (En-
glish, Spanish, Chinese, Samoan,
Tagalog, Ilocano, Hawaiian, So-
mali), and multigeographic Na-
tional Institutes of Health (NIH)—
funded study that sought to identify
predictors of research participa-
tion by gaining a better under-
standing of the factors that impede
or enhance such participation

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among diverse racial/ethnic
groups.41 This study was a first
effort to address the need for
comparative research about atti-
tudes, beliefs, barriers, and facil-
itators to minority research par-
ticipation across racial/ethnic
groups in multiple geographic
regions.41,67 The qualitative
findings from Project MICRO
showed both distinct barriers
and facilitators based on histori-
cal and cultural factors specific to
each of the groups and shared
barriers and facilitators based on
socioeconomic and environmen-
tal factors that were shared
among the 4 distinct racial/ethnic
groups (African Americans, Latinos,
Native Hawaiians, and Filipinos).
There were several distinct bar-
riers, but the only barrier that was
shared by all the groups was lack
of information about clinical
research.67

With the growing rates of ra-
cial/ethnic multicultural popula-
tions come growing rates of health
disparities and disease burden
among them and, consequently,
the increasing importance of their
participation in clinical research.
Without assuming that all such
minority groups have the same
barriers and facilitators, it is im-
portant to identify context-specific
culturally shared and distinct fac-
tors that deter or enhance their
participation in clinical research.
When factors that are relevant
across multiple racial/ethnic
groups are identified, interven-
tions that address common issues
can then be developed on a
broad platform and adapted to
meet the particular specificities
of targeted racial/ethnic groups.
When such recruitment mate-
rials resonate with racial/ethnic
minority communities, they are
more likely to participate effec-
tively in clinical research. Fur-
thermore, interventions can be

developed more efficiently and
in a cost-effective manner by
leveraging recruitment efforts
across multiple groups and their
shared barriers and facilitators.

The ability of medical science
advances to reach all Americans is
predicated upon the participation
of diverse study participants in an
array of clinical trials and is ech-
oed in the NIH’s call for trans-
lational research over the past
decade. Successful translational
research requires not only inno-
vative strategies for the recruit-
ment and retention of diverse
populations into research but also
increased investments into com-
munity education and the dissem-
ination of results. However, there
is little understanding of what
are the key barriers and facilita-
tors to address for which popula-
tions or what the driving issues
around recruitment and retention
and general community education
are as they relate to clinical
research.

We present a systematic review
of the existing literature of both
qualitative and quantitative stud-
ies that include multicultural
racial/ethnic participant voices
to identify the range of themes and
papers and that take a compara-
tive perspective in their assess-
ment of barriers and facilitators to
participation in health research.
To the best of our knowledge, this
is a first effort to do so. We have
broadly defined “health research”
as health-related research involv-
ing human participants in clinical
trials, clinical research, and be-
havioral health interventions to
be as inclusive as possible.

METHODS

The Preferred Reporting Items
for Systematic Reviews and Meta-
Analyses (PRISMA) statement
consists of a 27-item checklist and

a 4-phase flow diagram to help
authors improve the complete
reporting and transparency of
systematic reviews and meta-
analyses.68 As necessary, some
of the items on the PRISMA
checklist may be modified.69 We
conducted a systematic review in
conformance with modified items
of the PRISMA Statement to an-
swer the following question:
among major US racial/ethnic mi-
nority populations, what are the
experienced or perceived barriers
and facilitators to participating
in health research?

We chose the PubMed and
Web of Science databases for their
complementary content to con-
duct the literature search. PubMed
provides biomedical and health
content related to the life sciences,
behavioral sciences, chemical sci-
ences, and biomedical engineer-
ing, whereas Web of Science pro-
vides multidisciplinary content on
the sciences, social sciences, arts,
and humanities. PubMed and
Web of Science are proprietary
databases for peer-reviewed jour-
nal content that provide the ability
to conduct transparent, controlled,
and powerful searches.70,71 The
decision to not conduct a search
on Google Scholar limits the
content of this review to peer-
reviewed articles and inherently
excludes gray literature and sub-
sequently the results of recent
studies presented at conference
proceedings or institutional publi-
cations. Furthermore, although
Google Scholar may have allowed
for greater inclusion of online
and open-access journals in our
search process,72 we excluded
this search engine because repli-
cability of searches, an extremely
important factor for systematic
reviews, cannot be ensured be-
cause of the “constantly-changing
content, algorithms and database
structures” of Google Scholar.73(p214)

We selected titles, abstracts,
and articles on the basis of the
following eligibility criteria. We
reviewed only English-language
articles published in the United
States between January 2000 and
December 2011. We generally
adhered to the norm of a maxi-
mum time frame of 5 to 10 years
in selecting the time frame for this
review to ensure the most current
and relevant articles.74 The target
population of interest in the article
had to include at least 1 of the
following adult racial/ethnic mi-
nority populations: African Amer-
ican, Latino, Asian American, or
Asian—Pacific Islander. We limited
the search to the United States to
account for the health care context
that is unique to US residents,
such as its particular history of
racism with regard to health care
provision and research, most
infamously exemplified in the
Tuskegee Study, and the lack of
universal health care in the United
States unlike most other devel-
oped nations. The literature
search related to the barriers (and
facilitators) to health research
participation perceived by adult
African American, Latino, Asian
American, and Asian and Pacific
Islander populations. We did not
include American Indians and
Alaska Natives in this review
because Indian Health Services
presents a unique context for
health care and research that is
not available to other racial/eth-
nic minorities.

Key terms used for the litera-
ture search included racial/ethnic
minority (e.g., African American,
Latino, Pacific Islander, Asian
American, or their derivative);
health research study, clinical
trial, and clinical research (or its
derivative); and participation, ac-
cess, recruitment, barriers, and
facilitators (to health research).
Examples of search strings

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included “research participation
barriers among Latinos” and
“African American AND research
AND participation” as described
in the search plan in Appendix 1
(available as a supplement to this
article at http://www.ajph.org).
In addition, the study’s method-
ology had to be clear and at least
1 of the study’s aims had to use
primary data to evaluate or assess
the barriers or facilitators to par-
ticipation in health research. We
limited quantitative studies to
those that surveyed self-reported
factors that contributed to

barriers and facilitators, and in-
dividuals’ attitudes, beliefs, and
values related to health research
participation. We excluded stud-
ies with target populations youn-
ger than 18 years. We also
excluded articles that did not
provide the barriers or facilita-
tors to health research participa-
tion from the perspective of the
racial/ethnic—minority partici-
pant. We focused on articles
that provided a voice to racial/
ethnic—minority populations and,
therefore, we excluded studies
that reported the perspectives of

research staff, physicians, or in-
stitutions.

We initially retrieved a total
of 164 articles from the systematic
literature search by using the
search terms in Appendix 1
(available as a supplement to this
article at http://www.ajph.org);
21 articles were duplicates
(Figure 1). Duplicate articles
occurred because articles appeared
in both the PubMed and Web of
Sciences databases, or when the
articles with more than 1 target
racial/ethnic minority population
would appear in searches for each

individual racial/ethnic minority
population. We screened the
remaining 143 titles for their rel-
evance to the research question of
this review and we excluded 27
literature reviews, commentaries,
and editorials. We reviewed the
remaining unique full-text articles
(n = 116) from the combined
searches on PubMed and Web of
Science and we excluded 72 for
not meeting the inclusion criteria;
thus, we included 44 articles in
the review.

We abstracted data in a stan-
dardized format and organized
the data into tables that included
the author’s names, title of the
article, year of publication, target
population, age of target popula-
tion, methodology including
whose perspective was being
reported, and key findings related
to the barriers and facilitators to
participation in health research.
We coded the studies for racial/
ethnic minority population, meth-
odology (i.e., qualitative, quantita-
tive, or mixed methods), distinct
barriers and facilitators to partici-
pation, and shared barriers and
facilitators to participation, and
grouping of themes across shared
barriers and facilitators. Two au-
thors (S. G. and N. D.) coded the
findings of the barriers and facili-
tators in an iterative process. The
consistency between the coders
was more than 90% and they
resolved conflicts by using an it-
erative process and discussion
to reach consensus.

RESULTS

The articles presented in this
review provide the perspectives
of racial/ethnic minorities across
age and socioeconomic status re-
garding participation in health
research. Of the 44 articles
included, 23 used qualitative
methods such as focus groups

Records identified through database
searching
(n = 164)

Sc
re

en
in

g
In

cl
u

d
ed

El
ig

ib
ili

ty
Id

en
ti

fi
ca

ti
o

n

Records after duplicates removed
(n = 143)

Records screened
(n = 143)

Records excluded that
were literature reviews,

commentaries,
and editorials

(n = 27)

Full-text articles assessed
for eligibility

(n = 116)

Full-text articles excluded:
target populations resided
outside the United States,
were under 18 years, did
not include at least 1 of

the racial/ethnic minority
populations of interest or

their perspective
(n = 72)

Studies included in
qualitative synthesis

(n = 44)

Note. Adapted from Moher et al.
75

FIGURE 1—Flow diagram for systematic review of qualitative and quantitative studies regarding the

experienced or perceived barriers and facilitators to participating in health research for major US racial/

ethnic minority populations from a search on PubMed and Web of Science from January 2000 to

December 2011.

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and individual interviews, 16 ar-
ticles used quantitative methods
that statistically analyzed data
collected through question-
naires, and the remaining 5 arti-
cles used mixed methods (Table 1).
Sixteen studies were exclu-
sively conducted among Afri-
can Americans, 6 among Asian
Americans, 3 among Latinos, and
1 among Pacific Islanders; the
remaining 18 studies included
a combination of at least 2 racial/
ethnic minority groups including
White populations that were
often used as the reference
group. Asian Americans were
primarily represented by peo-
ples of East Asia and Southeast
Asia, and Pacific Islanders were
represented by Native Hawai-
ians, Samoans, and Tahitians.
Latinos were overwhelming rep-
resented by Mexican Americans
and immigrants from Mexico;
also represented were peoples of
Puerto Rico and Central Amer-
ica. A number of studies did not

differentiate the country of origin
of Latinos and Hispanics.

Many of the studies focused
on women (14 of 44) or had an
overrepresentation of women
(66.5%; n = 5353), whereas only
1 study focused exclusively on
men (Appendix 2, available as
a supplement to this article at
http://www.ajph.org). A few stud-
ies (n = 11) utilized bilingual staff
or translated materials for non—
English-speaking participants
who immigrated from Latin
America or Asia. Nonspecific
health research studies (n = 14)
dominated the literature, fol-
lowed by cancer (n = 11) and
HIV/AIDS (n = 11), and other
health topics (n = 8; Table 2).
The nonspecific health research
was often referred to as medical
research or hypothetical re-
search. Other disease-specific
studies included in this review
focused on Alzheimer’s disease,
kidney disease, and hyperten-
sion, along with pregnancy and

genetic-related conditions. The
results of the coded findings are
summarized in the next section.

Shared and Distinct Barriers

and Facilitators

The terms shared and distinct
represent the relatively commonly
and uncommonly reported bar-
riers and facilitators reported in
the articles on the 4 racial/ethnic
communities included in this re-
view. The concordance of mes-
sages across studies suggests that
certain themes may be shared or
distinct as a greater or lesser pri-
ority for a particular community
but they are not necessarily dis-
tinct in the sense that those bar-
riers or facilitators are exclusive to
a particular community. It is im-
portant to note that the shared
and distinct barriers and facilita-
tors presented were drawn from
a comparison of the limited num-
bers and types of studies included
in this review and not from
a comparison of the underlying

populations. As described in Ap-
pendix 2 (available as a supple-
ment to this article at http://www.
ajph.org), the studies included in
this review vary considerably in
the extent to which they represent
various populations. As a conse-
quence, on the basis of the avail-
able number and types of studies
of a specific population, we can
only present examples of mean-
ings of a barrier or facilitator for
a given population expressed in
the set of studies included in this
review but cannot say very much
about the distribution or impor-
tance of this barrier or facilitator
in the defined population. Thus,
observations are limited to the
articles for this review and are not
representative general statements
about the populations under study
and may allow us to make only
explorative generalizations.

Both quantitative and qualita-
tive research findings included in
this review provided observations
related to the shared barriers and
facilitators, whereas the distinct
barriers and facilitators were ex-
clusively observed in the qualita-
tive research findings. Further-
more, the examples of shared and
distinct barriers and facilitators
presented in the tables are not
exclusive to a group but rather
illustrative of the observations
made from the studies reviewed.

Shared Barriers

The shared barriers to health
research participation that were

TABLE 1—Distribution of the Reviewed Articles by Method and Target Population Regarding Barriers and Facilitators to Health Research

Participation for US Racial/Ethnic Minority Populations From a Search on PubMed and Web of Science From January 2000 to December 2011

Article Type Total, No. (%) African American, No. (%) Asian American, No. (%) Latino, No. (%) Pacific Islander, No. (%) ‡ 2 Racial/Ethnic Groups, No. (%)

Qualitative 23 (52.3) 10 (22.7) 3 (6.8) 2 (4.5) 1 (2.3) 7 (15.9)

Quantitative 16 (36.4) 3 (6.8) 3 (6.8) 0 0 10 (22.7)

Mixed methods 5 (11.4) 3 (6.8) 0 1 (2.3) 0 1 (2.3)

Note. Total number of articles in the review was 44.

TABLE 2—Distribution of the Reviewed Articles by Health Condition Regarding Barriers and Facilitators

to Health Research Participation for US Racial/Ethnic Minority Populations From a Search on PubMed

and Web of Science From January 2000 to December 2011

Article Type Nonspecific Health Condition, No. (%) Cancer, No. (%) HIV/AIDS, No. (%) Other, No. (%)

Qualitative 7 (15.9) 8 (18.2) 5 (11.4) 3 (6.8)

Quantitative 5 (11.4) 3 (6.8) 5 (11.4) 3 (6.8)

Mixed methods 2 (4.5) 0 1 (2.3) 2 (4.5)

Total 14 (31.8) 11 (25.0) 11 (25.0) 8 (18.2)

Note. Total number of articles in the review was 44.

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reported across all 4 racial/ethnic
groups included mistrust and lack
of access to information (Table 3).
Lack of access to information as
reported in the studies reviewed
among Asian Americans, Latinos,
and Pacific Islanders pointed to
language barriers as a key to per-
ceived lack of access to informa-
tion among these 3 groups. …