Eliminating cancer health disparities and ensuring the best possible outcomes for anyone affected by cancer are preeminent challenges facing the cancer research community now and in the foreseeable future. As this topic amply demonstrates, cancer disparities are largely a product of inequitable distribution of health care, exposures to risk factors, and provisions for a healthy lifestyle. Although biologic factors contribute to some of these disparities, the implications of biologic differences are greatly compounded by environmental, social, and behavioral factors. Eliminating cancer disparities will necessarily entail a social justice agenda that emphasizes universal access to a continuum of high-quality care and infrastructure to promote and support healthy lifestyles.
This topic will consider the ways in which psychosocial and behavioral research can contribute to the ultimate elimination of cancer disparities. (1) First, it is necessary to examine how trends in the composition of our population, likely advances in technology, and pending changes in health care delivery may each impact cancer health disparities. (2) Based on this analysis, suggestions are made for a number of fundamental solutions to cancer health disparities that are urgently needed now, and that will continue to be imperative in the foreseeable future. (3) Next are lessons learned from the studies summarized in this volume. Beyond their immediate research questions, these studies embody critical perspectives and innovative methods necessary to meet the challenges of the future. (4) These studies provide the basis for future research to empower consumers, strengthen communities, and promote social justice in health care. Aligning our science with the need for social justice will require us to build upon the many innovations embodied in the American Cancer Society’s current research portfolio, including community participation in research, empowerment of individuals and families, greater accountability and better communication between providers and consumers, highly adaptive and comprehensive behavioral interventions, and sophisticated use of health information resources to guide and shape policy.
SOCIETAL TRENDS WITH IMPLICATIONS FOR THE FUTURE OF CANCER HEALTH DISPARITIES
If there is one takeaway message that emerges from the in-depth reviews and scholarly research presented in this volume, it is that the future of cancer prevention, early detection, support, and care is already upon us (Albano et al., 2007; Institute of Medicine, 2006; Jemal, Siegel, Xu, & Ward, 2010). Although there have been notable gains in closing some gaps related to cancer screening and health risks, the excess burden of many diseases continues to fall disproportionately on ethnic and racial minorities (Byers, 2010; Shariff-Marco, Klassen, & Bowie, 2010; Stockdale et al., 2007). These groups are subject to greater risk and inadequate access or worse cancer outcomes, associated with specific environmental, cultural, and lifestyle differences (DeLancey, Thun, Jemal, & Ward, 2008; McAlearney et al., 2008).Note that these societal trends interact with the overarching political, social, and economic climate. For over 30 years, the United States has experienced unprecedented imbalances in the distribution of wealth among upper-, middle-, and lower-income citizens and families (Adler et al., 2007; Brunner & Marmot, 2006; Paradies, 2006). It will be worthwhile to consider how historical shifts in demographics, technology, and policy may affect people with different levels of resources.
A Growing, Aging Population, in Poorer Health Than Its Predecessors
As the baby boomers start to retire, an increasing portion of the population of the United States will enter the years when they are at greater risk for cancer. The sheer number of older adults will represent a challenge to the health care system, as more and more individuals require cancer screening and care (Avendano, Glymour, Banks, & Mackenbach, 2009; Smith, 2005). Not only is our population aging, but it is aging with more and more chronic health problems, due to obesity, poor nutrition, and inactivity. The implications of these trends for cancer-related health disparities are many and profound. For example:
• Do we have the health care person-power to meet the growing demand for treatment and care across the cancer continuum? Individuals with lower incomes or living in communities with fewer resources may be subject to greater disparities, if demand for these services outstrips supply.
• Are cancer therapies that have been developed and tested in highly selected samples adequate to meet the needs of populations with comorbid diabetes, cardiovascular disease, and other diagnoses? Lower-income and ethnic-minority groups are more likely to be diagnosed with chronic diseases in addition to cancer, are less likely to be represented in research, and so may experience worse treatment outcomes (Kim, Kumanyika, Shive, Igweatu, & Kim, 2010; Reynolds, Hanson, Henderson, & Steinhauser, 2008).
• How do we serve the growing population of cancer survivors and their family support systems, particularly in light of significant disabilities related to cancer and to their other health needs? In addition to difficulties in affording support and care, lower-income families are more likely to face less job flexibility, inadequate housing and transportation, and multiple members with chronic health needs, all of which can seriously compound the well-being of cancer survivors.
Increasing Diversity of Patients and Families
The recently released results of the 2010 census provide further evidence that the U.S. population is becoming more ethnically and linguistically diverse (U.S. Census Bureau, 2011). Immigrants to the United States are especially affected by barriers associated with language, culture, and stigma, as well as uncertain legal status and intentional impediments to care (Lamont & Small, 2008). These trends suggest that our health care system will have to become increasingly adept at responding to differences in cultural identity (Like, 2008; Smith, Bonomi, Packer, & Wisnivesky,2010). Unfortunately, minority status will continue to put people at risk for difficulties in cancer treatment:
• Will minority patients continue to encounter pervasive implicit racial bias, with deleterious effects on quality of care? The growth in the number of ethnic-minority health professionals has not kept pace with changes in the population, particularly among African American, Latino, and Native American populations (Alegria, 2009; Terry, 2006; Cargill, 2009).
• How will we respond to the heterogeneity within racial and ethnic categories? As Chen, Gee, Spencer, Danziger, and Takeuchi (2009) point out, Asian, South Asian, and Latino immigrant groups reflect many different nationalities, subcultures, and immigration experiences. Individuals and families relate to health care in many and varied ways, so it is not likely that one-size-fits-all approaches will work, even for members of a single ethnic group.
• In addition to ethnicity and race, how will we accommodate increasing heterogeneity in terms of factors such as family composition? For example, culturally based differences in health behavior and preferences for health care may vary substantially across generations within a given family (Patel, Peacock, McKinley, Clark Carter, & Watson, 2009; Peterson, Dwyer, Mulvaney, Dietrich, & Rothman, 2007). The health care system must be able to accommodate nontraditional families, same-sex marriages, and civil unions. Accommodation not only requires greater awareness and sensitivity on the part of medical professionals, but also changes in everything from medical record keeping through education materials to the attitudes and skills of administrators and staff (Hasnain-Wynia et al., 2007).
Emerging Health Technologies
Ideally, continued advances in cancer detection and treatment will lead to improved health of all members of the population (Cullum, Alder, & Hoodless, 2011; Goldsmith, Dietrich, Du, & Morrison, 2008; Ostroff et al., 2010; Singal & Marrero, 2010). However, as cancer detection and treatment becomes increasingly sophisticated, individuals able to access advanced technology will be the most likely to benefit. For example, for certain surgical procedures, outcomes are associated with access to high-volume cancer specialty centers. Similarly, determining optimal treatment depends on the ability to provide increasingly detailed characterization of tumor genetics and other characteristics:
• Will advances in technologies constrain the number of places where patients are able to receive state-of-the-art care? There is already incredibly wide variation in cancer treatment across settings.Economically disadvantaged patients, as well as those living in communities without academic cancer centers, are least likely to have access to settings where the latest technologies are available (MacDonald, Blazer, & Weitzel, 2010; Price, 2010).
• Similarly, will increasingly complicated choices present greater challenges in terms of health decision making and provider-patient communication? Oncologists may avoid offering certain treatments if they expect patients to have difficulty in understanding choices or providing informed consent.
• Will patients face increasing challenges with adherence as self-administered oral treatment for cancers become more widely available? As we have seen with complex oral regimens for treatment of HIV, adherence is often more problematic for patients facing challenging physical, emotional, or socioeconomic circumstances, contributing to poorer outcomes of care.
Health Care Reform
At this writing, the outcome of federal health care reform efforts is far from certain. In principle, improving individuals’ access to health care insurance ought to reduce health disparities (Errickson et al., 2011). However, even if current legislation is successful, increased coverage in and of itself does not assure access to good-quality care (Fiscella, 2011). Initiatives to promote greater accountability and coordination of care hold much promise, but top-down regulatory and structural systems alone are unlikely to overcome cancer health disparities (Burgess, 2010). Pressures to maximize corporate profits combined with challenges in defining, measuring, and regulating quality of care will continue to affect cancer disparities. Several additional factors may contribute to even greater cancer-related health disparities. For example:
• Do providers and systems have the training and tools they need to address the changes in patient populations? Health care reform is intended to expand access for patients who have previously been closed out of health care (Epstein, Fiscella, Lesser, & Stange, 2010). This will increase the numbers and proportions of patients that providers see who have previously been underserved. Clearing this bottleneck means more patients with lower levels of adherence to screening and health behavioral guidelines, higher levels of medical and psychiatric comorbidities, and more complex psychosocial needs (Boyer & Lutfey, 2010). Without special steps to absorb these patients into the current health delivery system, already overtaxed providers and systems in low health resource and low-income communities may be overwhelmed, contributing to greater disparities (Paredes, 2008; Varkey et al., 2009).
• How will increased access impact transitions in care and communications across systems? Already, fragmentation in care accounts for outcomes for cancer patients due to delays in adjuvant chemotherapy or radiation treatment after surgery. Similarly, communications between oncology and primary care systems are often inadequate to address the special needs of cancer survivors. Increasing numbers of complex patients, limited resources, and greater requirements for documentation and accountability may further impede communications across systems. Even with the assistance of patient navigators and the like, outcomes will be worse for individuals who are not able to participate fully in the management of their own cancer care.
IMPERATIVES FOR ELIMINATING CANCER DISPARITIES
This brief discussion of societal trends in population composition and health, distribution of cancer treatment and screening technologies, and pressures on health service delivery systems leads to an uncomfortable conclusion: Without significant, widespread efforts to offset these trends, disparities in cancer are likely to continue and even expand. Of course, the best way to eliminate cancer disparities would be to eliminate cancer. However, we cannot defeat cancer in the same way that our predecessors in medicine and public health defeated polio. There is no single technological innovation on the horizon that will eradicate any one of the major cancer killers, let alone all cancer. Instead, our best hope in defeating cancer requires engaging people in prevention, detecting disease early, and ensuring universal access to state-of-the-art treatment and supportive care (Epstein et al., 2010). In short, reducing disparities and making headway against cancer will require continued mobilization and expansion of public health resources and infrastructure. Although not exhaustive, it is possible to outline a number of steps that are necessary to counter the forces that drive cancer disparities. These are labeled as "imperatives" because elimination of cancer health disparities will require efforts at the following levels:
1. Effective health behavioral interventions must become the standard of care. Research presented in this volume highlights the ways in which effective strategies can be developed and implemented to improve diet and physical activity, reduce smoking, improve access to screening and care, and achieve adherence to recommended treatment. As discussed below, these studies demonstrate considerable sophistication and depth of understanding in their approaches to complicated decision making and behavior change, particularly for people in challenging life circumstances. Outcomes of cancer and associated disparities are fundamentally related to these health behaviors and lifestyle choices, as reflected in national health goals and plans (U.S. Department of Health and Human Services, 2011). Unfortunately, these interventions are not at all the norm in public health. For example, national efforts to promote breast and cervical screening provide coverage for tests but very few resources for education and outreach, and no incentives to incorporate (or develop) evidence-based interventions. Recent efforts to encourage providers to use smoking cessation guidelines emphasize the use of specific steps to promote cessation (Ask, Advise, Assist, Assess, and Arrange), but there is no standard of care available to ensure that these different steps are carried out effectively (cf. Dixon et al., 2009). The lack of awareness of techniques available to encourage these behaviors and the wide variation in quality of care is a travesty. To make progress against disparities in cancer and other chronic diseases, we must help communities use evidence-based methods to establish continua of public health care that will provide effective education and ensure access to necessary behavioral and preventive health care. This would be a substantial undertaking,involving the mass media, community organizations, employers, education systems, and, of course, health and mental health providers. Recent advances in dissemination and implementation research offer strategies for promoting sustainable transfer of effective behavioral and psychosocial interventions into widespread practice (cf. Brownson et al., 2007).
2. All primary care and frontline providers must have the time, information, communication skills, and support staff needed to support patients’ behavioral change and ability to participate in their own health decisions. This imperative is acknowledged in recent health policy. For example, development of the patient-centered medical home concept includes steps to promote greater opportunities to support patients (Goode, Haywood, Wells, & Rhee, 2009; McMillen & Stewart, 2009). However, there is no incentive for incorporation of evidence-based interventions to improve patients’ health literacy, lose weight, or accomplish behavioral change. More generally, overcoming disparities means reimagining what we can and cannot expect from primary care. Time constraints such as the proverbial "15 minute" primary care visits are frequently invoked by physicians, policy makers, and researchers as the reason why certain interventions cannot be incorporated into primary care (Bodenheimer & Laing, 2007). However, the "15 minute" visit is not an inviolable law of nature. We need to determine how much time physicians and their support staff need to spend with patients to accomplish different goals. Although evidence-based stepped interventions should be employed to ensure the greatest cost-efficiency, we must insist that sufficient care be provided to accomplish behavioral outcomes.
3. Hospitals and oncology care providers must provide the highest standard of care for the cancers that they treat. The wide variation in oncology care available to cancer patients in communities is unacceptable. All oncologists must have access to technology needed to provide the agreed standard of care to all of the patients that they treat (Myers & Teel, 2008). Patients must have access to all available treatment options and assistance to consider the alternatives. Providers have the responsibility to be aware of advances in care of patients that they treat, and they must be held accountable if treatment moves beyond their areas of competence or the technology at their disposal. This may drive more oncologists into collaborative practices, or require them to affiliate with high-volume centers that can offer advanced surgical care, pathology, and clinical trials as needed. Patients rely upon their doctors to provide the best possible care for their condition. To eliminate cancer disparities, we have to make sure that this trust is well founded.
4. Systems must be in place to ensure that appropriate transitions in care occur in a well-coordinated and timely fashion. No matter how well each component of the health care system performs its particular function, patient outcomes are adversely affected by problems in coordination of care and transitions across systems (Feldstein & Glasgow, 2008; Hong, Wright, Gagliardi, & Paszat, 2010). A variety of strategies have been implemented to foster better coordination of cancer care, including multidisciplinary care teams, integrated medical records, and regional health information systems (Lamb et al., 2011). Shared care and colocated care models have been proposed, to ensure integration of necessary oncology follow-up with routine primary care for cancer survivors (Gilbert et al., 2011; Thorne & Truant, 2010). Over the past several years, there has been wide dissemination of patient navigation models to facilitate transitions (Shelton et al., 2011; Yosha et al., 2011). Although patient navigation may provide vital assistance to individuals on a case-by-case basis, navigation may not be the ideal long-term solution to facilitating transitions and coordination of care (Robie, Alexandru, & Bota, 2011; Thorne & Truant, 2010). Rather, it is vital to examine the health system, community, and financial barriers that create the need for navigation in the first place. Navigation programs may serve as stopgap measures until procedures are put into place to reduce fragmentation and poor coordination, and to make it easier for patients to make routine transitions without additional assistance (Nguyen, Tran, Kagawa-Singer, & Foo, 2011; Phillips et al., 2011). This would allow navigation programs to focus on patients experiencing more complex needs or with greater likelihood of getting lost in the system (Guadagnolo et al., 2010; Jean-Pierre et al., 2011; Schapira & Schutt, 2010).
5. Effective treatment for mental health issues, family functioning, spiritual support, and palliative care should be universally available to all patients. Mental health is the linchpin of physical health, and we will not succeed in eliminating disparities in access and outcomes along the cancer continuum if we ignore this aspect of health (Kadan-Lottick, Vanderwerker, Block, Zhang, & Prigerson, 2005; Neighbors et al., 2007; Siegel, Hayes, Vanderwerker, Loseth, & Prigerson, 2008). Individuals with untreated psychiatric, substance abuse, and social problems have markedly worse health behaviors, utilization of screening services, and health outcomes. Although evidence-based interventions have been developed to address the emotional and psychosocial needs of cancer patients, these programs are not universally available, particularly in low-income communities and areas that lack major academic centers (Hughes, 2005; Weng et al., 2009). Lack of access to palliative care in minority and low-income communities has also been widely documented (Anderson, Green, & Payne, 2009; Barnato, Anthony, Skinner, Gallagher, & Fisher, 2009; Fitzsimons et al., 2007; Johnson, 2009; O’Mahony et al., 2008). As several of the authors in this volume argue, eliminating cancer disparities means eliminating undue pain and distress and promoting optimal quality of life .
It is worthwhile to reflect on these imperatives. Although expressed with some urgency, the ideas offered here are hardly radical. After all, why shouldn’t all patients benefit from access to well-coordinated systems offering the best available medical, behavioral, and mental health care? From a technical point of view, these solutions are well within our reach. Indeed, if anything, readily available information technology would make it easier to take on these challenges than ever before. Patients anywhere can benefit from the tele-presence of top surgical specialists (Stewart & Switzer, 2011). Expert systems, such as IBM’s "Watson," are becoming sophisticated to the point that providers can pose questions about diagnostic and treatment quandaries in natural language. Electronic medical records are being designed to support coordination of care. Patients are gaining the ability to exchange information with providers and obtain information and support from telephone and online resources. Thanks to these emerging technologies, it is possible to imagine more and more ways in which we can increase the availability of state-of-the-art cancer resources to isolated communities and disadvantaged patients (Stewart & Switzer, 2011). On the other hand, even with these technological advantages, doing what we know we must do to eliminate cancer health disparities will take enormous political will and a major investment of money. Many of these solutions would involve changing the clinical practices and business models of health providers and hospitals, insurance companies, and government agencies. We continue to have cancer health disparities because the steps that we must take to truly eliminate them will cut into corporate profits and place additional strain on public resources.
This is the point in discussions of health inequities at which most social and behavioral scientists sign off. Although most of us who conduct research with medically underserved and vulnerable groups are highly concerned about equity and social justice, these issues involve economic and policy decisions that are beyond the scope of our research. It is not even clear if those issues are at all amenable to methods of social science and public health. Despite our best and most creative efforts, the root causes of cancer health disparities often seem intractable and necessary solutions out of reach.
This brings us to the crux of the argument. Rather than being irrelevant, I contend that the social and behavioral sciences have a fundamental role in making these imperative solutions happen. Indeed, the scholarship presented in this volume embodies many of the strategies that will be needed. However, to truly eliminate cancer disparities, it will be necessary to reframe and expand our research to look beyond individual health behavior and access to care, to consider our societal and cultural responses to cancer health disparities and inequitable health care. If we want to overcome disparities, we must ultimately be concerned about public support for necessary solutions (Small, Harding & Lamont, 2010). There must be a sufficiently broad consensus that elimination of cancer health disparities is a priority for funding, and an issue that will affect consumers’ purchases and voters’ decisions (Reichlin, 2011).
The concept of using social science to promote social justice may seem quite foreign to many. Yet there is a long-standing tradition in social sciences concerned with fostering the empowerment of underserved communities in the face of political oppression, social disenfranchisement, and economic stress. Consider that in the 1970s and 1980s, many people in the field of community psychology—my field—were concerned with overcoming policies that "blamed the victims" of poverty programs that fostered dependence and made it more difficult for individuals to act on their own behalves. Rappaport (1981) discussed the inherent tensions between a top-down and paternalistic prevention agenda versus an empowerment agenda that provided individuals with resources to discover and organize community solutions to problems that plagued them. Helping disparate groups of stakeholders develop a shared sense of community to foster collective action to improve local conditions was an important theme. Community psychology, and sister disciplines such as action-oriented anthropology, were involved in fostering and supporting social movements in areas such as mental health care, juvenile justice, education, and housing (Schensul & Trickett, 2009).
Although strands of this work are still under way, research in public health has generally distanced itself from community empowerment and advocacy, in favor of individual-level solutions. Over the past 25 years, the emphasis in many areas of public health has been on the development of individual behavioral interventions. The reasons for this shift are many: A cultural backlash against the civil rights and poverty programs of the 1960s and 1970s; the growing reliance on medical-model solutions to psychological, social, and behavioral health problems; the dissolution of the Alcohol, Drug Abuse, and Mental Health Administration, and the incorporation of all federally sponsored social and psychological research under the umbrella of the National Institutes of Health; and the emphasis on top-down randomized trials as the best, if not the only acceptable, approach for identifying solutions to public health problems. To be sure, research on community work in public health has continued and grown to encompass behavioral health promotion and disease prevention, but the emphasis has largely been on discovering how to promote individual-level behavioral change in a wider variety of settings. Changing the underlying conditions of inequity and social injustice that contribute to health disparities has largely been off the table.
