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Social disparities in cancer: lessons from a multidisciplinary workshop
Joel S. Weissman
1,
* & Eric C. Schneider
2
1
Institute for Health Policy, Massachusetts General Hospital, and, Department of Health Care Policy, Harvard
Medical School, Boston, MA, USA;
2
Division of General Medicine and Primary Care, Department of Medicine,
Brigham and Women’s Hospital, and Department of Health Policy and Management, Harvard School of Public health,
Boston, MA, USA
Received 02 June 2004; accepted in revised form 08 July 2004
Abstract
The problem of social disparities in cancer continues to challenge health care researchers. This article summarizes
the themes and lessons emerging from a 2004 workshop that convened researchers from academic and government
venues to review and discuss the extant literature, and to develop new conceptual frameworks for future
investigations. Workshop participants explored the factors that contribute to social inequalities in cancer in the U.S.
including the relative contributions of race and racism, the independent contributions of socioeconomic position,
insurance, and access to care. Noting the heterogeneous patterns of inequality across cancer types, the multiple
underlying causes of disparities, and the role of the health care system itself, the authors call for an organized
program of multidisciplinary research.
Introduction
Many articles appearing in academic journals end by
calling for more resear ch. Here, we begin and end by
calling for research, tempered by the need for action, as
well. When the program-in-development on cancer
disparities at the Dana Farber/Harvard Cancer Center
(DF/HCC) decided to spo nsor a workshop, the plan-
ning committee recognized early on the need to develop
a framework for clarifying what is meant by ‘cancer
disparities’ and for summarizing the disparate and
sometimes contradictory literature. We observed ini-
tially that social disparities in cancer outcomes appear to
be the product of multiple inequalities along a ‘cancer
continuum.’ Furtherm ore, these relationships appeared
to vary by disease; and the research literature itself
seemed incomplete and not well organized. The concept
of the ‘disparities research grid,’ [1], emerged from our
discussions.
The articles appearing in this special issue of the
journal, expose some important shortcomings of the
accumulated research literature on social disparities in
cancer. While much is known about the presence of
social disparities, the specific causes and mediators of
these disparities remain far from clear. Merely increas-
ing the amount of research without a well-formulate d
agenda could be non-productive or even counterpro-
ductive if the goal is to eliminate these social disparities.
In a workshop titled, ‘Social disparities in cancer:
Developing a research agenda,’ held on January 23,
2004 at the DF/HCC, participants illuminated a number
of major themes, many of which pose challenging and in
some cases controversial research questions. In this
article, we summarize the lessons that emerged from the
workshop and suggest our own set of recommendations
for future work in this area.
The role of race and racism
Much progress has been made during the last decade by
the scientific community in research on race. In an era of
the decoded human genome, researchers rely less and
less on race as a biological construct, yet it is still
accepted as a valid category for social and political
* Address correspondence to: Joel S. Weissman, PhD, Associate
Professor of Health Policy, Institute for Health Policy, Massachusetts
General Hospital, 50 Staniford Street, 9th floor, Boston, MA 02114,
USA; Ph.: 617-724-4731; Fax: 617-724-4738; e-mail: jweissman@
partners.org
Cancer Causes and Control 16: 71–74, 2005.
71
Ó
2005 Springer. Printed in the Netherlands.
purposes [2]. Although not explicitly stated in much of
the empirical literature, the underlying su pposition of
much research on race is that racism is the root cause
and perpetuator of many of these disparities [3–5]. The
acrimony that arises when individuals or institutions feel
accused of racism breeds a reluctance to examine or
address the issue in depth. Some organizations have
sought to defuse matters by using a different vocabu-
lary, as when the National Cancer Institute used the
term ‘racialism’ in a national meeting [6].
Workshop attendees and the authors in this journal
examined the issue of race and racism as a cause of
social disparities. As workshop attendees noted, if one
accepts the premise that a certain level of conscious or
unconscious racism still exists in US society, then
health care institutions and providers are unlikely to
avoid some degree of racism in their day-to-day
activities. Indeed, because racist behavior is frequently
unconscious or covert, it is extremely difficult to
identify, much less measure in a research setting. In
statistical models, racism or discrimination is usually
grouped with other factors as the ‘left-over’ variance
that has not been explained by other study variables
such as socioeconomic position (SEP), income,
education, and geography. Moving this work forward
is new research seeking to directly measure people’s
self-reported experiences of discr imination [7]. The
IOM report ‘Unequal Treatment’ also took an impor-
tant step forward in highlighting the role of ‘stereo-
typing’ as an important explanation for behavior and
decisions that appear to foster racial discrimination
[8]. Research on the psychological, social, and com-
munications strategies that would counteract the
deleterious effects of stereotyping is a good example
of a research that can guide acti on for change [9].
Nevertheless, whether the effects of discrimination are
primarily the result of malignant behavior by individ-
uals or can be traced to institutional policies influ-
enced by cultural bias is not yet a settled matter [10].
Socioeconomic position, insurance, and access to care
When researchers demonstrate differences in access,
utilization, or outcomes by race and ethnicity, ‘con-
founding’ by other socioeconomic factors is commonly
suspected. Minority individuals (including immigrants
and persons with disabilities) tend to have fewer
socioeconomic resources. SEP can be measured by
income, education, social position, and a variety of
other indicators [11]. Since the landmark Whitehall
study, it has been clear that persons with lower SEP
have worse health outcomes and this has been observed
in the US healthcare system as well [12]. The mecha-
nisms that explain the influence of SEP, however, are
less well understood. Persons with fewer socioeconomic
resources are more likely to live in substandard housing,
reside in unhealthy environments, experience stress at
work, and be socially isolated. The role of SEP in cancer
disparities appears to independently influence the inci-
dence, diagnosis and treatment processes (e.g., quality of
care), as well as the outcomes. Amon g these areas, the
relationship of SEP to quality of can cer care has
received the least attention to date, although that is
changing [13].
Based on years of research, there is little remaining
doubt that, compared with persons of similar SEP,
uninsured and under-insured Americans receive fewer
needed health services and suffer worse outcomes [14].
Thus, lack of adequate health insurance may be one of
the most impor tant problems contributing to disparities
in cancer diagnosis, treatment, and outcomes. As new
tests and treatments make cancer screening and cancer
care more expensive, the uninsured wi ll be at increasing
risk. But insurance is only part of the answer. As noted
in the review by Newman and Garner [15], in at least
one study looking at increased Medicare coverage for
screening services, the researchers found that it led to
reductions in invasive cervical cancer rates, overall, but
not when stratified by race. In the review by Palmer and
Schneider [16], women and men experience differences in
colorectal cancer incidence, screening use, and mortal-
ity, yet it is unlikely these differences are due to lack of
insurance.
Problems of heterogeneity and multi-causality
Workshop participants agreed that the study of cancer is
a good model for demonstrating the complexities of the
field of health care disparities, and further illustrates the
challenge to find a ‘one size fits all’ solution for
eliminating those disparities. Side-by-side comparison
of the cancer types reviewed in the accompanying
articles highlight the fact that disparities in etiology,
incidence, prevention, diagnosis, treatment, and out-
comes vary by disease. Furthermore, the impact on the
individual of being in a particular racia l/ethnic, social,
or cultural group is not unifor m or predictable across
cancer types or even across the continuum of a
particular cancer.
This heterogeneity markedly complicates the process
of constructing a research strategy. The use of the cancer
research grid sparked lively discussions about the
feasibility of performing valid research on racia l and
ethnic groups. Once researchers narrow their focus,
72 J.S. Weissman and E.C. Schneider
relevant factors and interaction s multiply quickly (and
sample sizes available for research dwindle). For exam-
ple, one group of participants wished to study the social
and cultural factors influencing breast cancer screening
among Asian women. Using qualitative methods, the
researchers were in the midst of constructing focus
groups, but recruitment proved challenging because
‘Asian’ as an ‘ethnicity’ is problem atic. What are the
similarities between ethnic Chinese, Cambodian,
Hmong, or Japanese individuals? Should the research
be limited to first or second generation immigrants? Is
primary language or mastery of English important?
Members of these groups may have very different
cultural views of their healthcare experiences. Selecting
the individuals who would best represent ‘Asian’ eth-
nicity posed a substantial impediment to performing the
research. One approach would be to base research in
communities in which individuals of differing ethnicities
share common values, SEP, or background. (see [17])
Clearly there is a need to develop methods for recruiting
and retaining minority residents in these efforts [18].
The issue of heterogeneity applies equally to the
underlying causes of disparities. The application of the
research grid made clear that research in this area is far
from one-dimensional in its findings, and can sometimes
lead to surprises. For example, it is commonly thought
that disparities are the result of differences in screening
rates, but public health success stories in breast cancer and
cervical cancer screening have all but eliminated the
screening differentials – yet differences in outcome
remain. Thus, researchers need to examine health status
prior to diagnosis as well as the intermediate steps – diag-
nosis and treatment – to understand why these disparities
persist.
The role of health care systems
It has been said that minority individuals are the ‘canary
in the coal mine’ guiding us to the common failures and
problems of our social institutions [19]. Because minority
patients may be more vulnerable to health system failures,
their experiences may highlight deficiencies in the orga-
nization of care. Disparities in the quality of care are one
symptom of a health care system that may be failing to
provide adequate care in general [20–22]. However, not
everyone shares the view that this connection is impor-
tant. Controversies over the wording of government
reports describing health disparities illuminate the defen-
siveness of the provider community and political bodies
[23]. Workshop participants worried that a shift in
emphasis toward improving overal l quality would take
the focus away from the problems faced by minorities and
simply reinvent the status quo.
Policy-makers seeking to reduce health disparities also
face a dilemma about whether to concentrate their efforts
at the level of health policy or social policy. Should health
plans, hospitals, and physicians be held accountable for
problems created by poverty, poor housing, unhealthy
living and work environments, and low quality schools?
What if those problems increase the risk of cancer? For
many types of cancer the links to public health issues are
obvious. The incidence of lung cancer and mesiothelioma
(which were not areas of focus for the accompanying
articles or the workshop) has been driven largely by
tobacco policies and workplace exposures of the past.
Cervical cancer is an example of the importance of
poverty and education as modifiable social factors that
influence the incidence, stage at diagnosis, and outcomes
of this disease. The grids in the accompanying articles
present numerous gaps in resear ch on the impact of social
policy on cancer.
One of the more contentious issues for researchers
examining social disparities in cancer is the role of
personal responsibility. To the extent that individual
behaviors influence incide nce, screening, and ultimately
outcomes, providers express some reluctance to assume
responsibility for addressing these issues. They may
claim that many of the underlying causes are ‘out of our
hands.’ The sense of the workshop was quite different.
Judy Bigby, sp eaking about breast cancer, noted that
women see themselves as a whole – not as sick body
parts. And most women do not want to be told they
have to act better – they want solutions. If the system of
care is to become truly patient-centered, the existence of
social disparities in cancer should cause us to re-examine
traditional divisions of institutional responsibility for
controlling cancer and improving cancer outcomes.
Looking forward
The goal of the DF/HCC workshop and of the articles
included in this issue was to assess the scope and
relevance of research on social disparities in cancer in
order to move forward on a new research agenda and
action plan for addressing disparities. While the authors
reviewed large numbers of research articles, the common
message emerged that much remains to be done. In
graphic format, the grids show areas of both ‘empty
space’ and contradictory evidence, each indicating
where the research opportunities are greatest. They also
show how the needs vary by disease. The paper on
prostate cancer by Gilligan [24] expresses the sense of
frustration, experienced by many workshop partici-
pants, that despite much expended effort, resear chers
are unable to offer a coherent explanation for the
Social disparities in cancer 73
existence of racial disparities. Wo rse, evidence on
disease prevention strategies that would reduce dispar-
ities for this disease is sorely lacking.
As we began this paper with a call for research to
guide action, we end, not with a call for more research in
the vein of what has gone before, but with a call for new
types of research that focus on the disparities and cancer
that are still largely unexplored. The action steps that
will address disparities are, by and large, not likely to
emerge from a narrow biomedical model. Instead, they
will require a multi-disciplinary approach, spanning
disciplines of psychology, anthropology, communica-
tions, health policy, public health, health services
research, and clinical research. Anything less will ignore
the moral, social, and human cost of allowing social
disparities in cancer to persist without a full examination
or accounting.
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