8

Accessible and Affordable Cancer Care

The committee’s vision for a cancer care delivery system is one in which all people with cancer have access to high-quality, affordable cancer care. Underpinning this system are new payment models that reward cancer care teams for providing patient-centered, high-quality care and eliminating wasteful interventions. The committee’s conceptual framework (see Figure S-2) illustrates the concept of rewarding clinicians for high-quality care through quality measurement and new payment models that promote accessible, affordable, high-quality cancer care. The focus on improving access to cancer care is consistent with the Institute of Medicine’s (IOM’s) report Ensuring Quality Cancer Care, which recommended enhancing services for the un- and underinsured and conducting studies to assess the reasons why certain segments of the population do not receive appropriate cancer care (IOM and NRC, 1999). The focus on affordability is a major update in this report.

In the current cancer care system, many patients lack access to affordable, high-quality cancer care. There are major disparities in cancer outcomes among individuals who are of lower socioeconomic status, are racial or ethnic minorities, and who are underinsured or lack health insurance coverage (see discussion in Chapter 2). Many of the disparities are exacerbated by these individuals’ lack of access to cancer care. Social determinants of health1 that extend beyond the health care system, such as individuals’ education, economic opportunity, and neighborhood and

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1 Social determinants of health are defined by the World Health Organization as “the conditions in which people are born, grow, live, work, and age” (WHO, 2013).



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8 Accessible and Affordable Cancer Care T he committee’s vision for a cancer care delivery system is one in which all people with cancer have access to high-quality, affordable cancer care. Underpinning this system are new payment models that reward cancer care teams for providing patient-centered, high-quality care and eliminating wasteful interventions. The committee’s conceptual framework (see Figure S-2) illustrates the concept of rewarding clinicians for high-quality care through quality measurement and new payment models that promote accessible, affordable, high-quality cancer care. The focus on improving access to cancer care is consistent with the Institute of Medicine’s (IOM’s) report Ensuring Quality Cancer Care, which recom- mended enhancing services for the un- and underinsured and conducting studies to assess the reasons why certain segments of the population do not receive appropriate cancer care (IOM and NRC, 1999). The focus on affordability is a major update in this report. In the current cancer care system, many patients lack access to af- fordable, high-quality cancer care. There are major disparities in cancer outcomes among individuals who are of lower socioeconomic status, are racial or ethnic minorities, and who are underinsured or lack health insurance coverage (see discussion in Chapter 2). Many of the disparities are exacerbated by these individuals’ lack of access to cancer care. Social determinants of health1 that extend beyond the health care system, such as individuals’ education, economic opportunity, and neighborhood and 1  Socialdeterminants of health are defined by the World Health Organization as “the conditions in which people are born, grow, live, work, and age” (WHO, 2013). 309

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310 DELIVERING HIGH-QUALITY CANCER CARE community factors, can also drive these disparities (see discussion in Chapter 2). At the same time, the increased costs of cancer care are negatively impacting patients and their families (Bernard et al., 2011; Shankaran et al., 2012). People with cancer are at higher risk for bankruptcy than people without a cancer diagnosis (Ramsey et al., 2013). In addition, a survey found that more than a third of individuals reported that medical problems were the reason for bankruptcy, even though three out of four families studied had insurance at the onset of illness (Himmelstein et al., 2009). From a system perspective, health care costs, including the costs of cancer care, are on an unsustainable trajectory that could pose serious fis- cal consequences for the United States. Drivers of increased cancer spend- ing include the aging population and the associated increase in cancer diagnoses, as well as the diffusion of new innovations into practice that may or may not be supported by evidence of better patient outcomes. In addition, the current fee-for-service reimbursement system encourages a high volume of care, but fails to reward the provision of high-quality care. This chapter presents the committee’s vision for an accessible and affordable high-quality cancer care delivery system. The first half of the chapter discusses access to care, including the importance of health in- surance coverage and barriers to care for vulnerable and underserved populations. The second half of the chapter addresses the affordability of cancer care, reviewing the current challenges to delivering affordable cancer care and strategies for improvement, including eliminating waste, encouraging high-quality cancer care through new payment models, and considering changes to benefit design. The committee derived much of the evidence base on access from the IOM’s previous work in this area (IOM, 1993, 2001, 2003, 2004, 2009a). Presentations and discussions from the National Cancer Policy Forum workshop Delivering Affordable Cancer Care in the 21st Century informed the committee’s deliberations on afford- ability (IOM, 2013a). The committee identifies two recommendations to address the pressing problems of access and affordability. Accessible Cancer Care Access to care, or “the timely use of personal health services to achieve the best possible health outcomes” (IOM, 1993, p. 4), is an important as- pect of high-quality cancer care (IOM and NRC, 1999). Patients’ health insurance status is a factor influencing an individual’s ability to access high-quality cancer care. Certain health system, patient, and clinician characteristics can also affect patients’ access to care and cancer care out- comes. This section discusses the impact of health insurance coverage on

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ACCESSIBLE AND AFFORDABLE CANCER CARE 311 patients’ access to care and, more generally, vulnerable and underserved populations’ access to care. Improve Access Through Health Insurance Coverage Health insurance coverage is a critical way to increase patients’ access to cancer care (C-Change, 2008; Goss et al., 2009; IOM, 1993, 2004, 2009a). Health insurance coverage can improve care for individuals by increasing their likelihood of receiving preventive care, obtaining early diagnoses of disease, undergoing timely and appropriate treatment, and taking needed medications. Studies of previously uninsured adults found that when in- dividuals became eligible for Medicare they could better access physician services and hospital care, and their use of effective clinical preventive services increased (reviewed in IOM, 2009a). The IOM has repeatedly recommended that the United States ensure that all people have health insurance coverage. Most recently, in America’s Uninsured Crisis: Consequences for Health and Health Care, the IOM recom- mended that “the President work with Congress and other public and private sector leaders on an urgent basis to achieve health insurance cov- erage for everyone” (IOM, 2009a, p. 114). That recommendation echoes the earlier report Insuring America’s Health: Principles and Recommendations (2004), which also recommended that the President and Congress develop a strategy to achieve health insurance coverage for all people. Similarly, the IOM’s 1999 report Ensuring Quality Cancer Care recommended improv- ing health insurance coverage for the un- and underinsured to ensure entry and equitable treatment within the cancer care system (IOM and NRC, 1999). A primary goal of the Patient Protection and Affordable Care Act (ACA) is to expand health insurance coverage.2 Passage of the ACA is expected to result in 25 million people gaining insurance coverage by 2023 through the individual mandate, the expansion of Medicaid, the creation of Health Insurance Marketplaces, and coverage of young adults on their parents’ insurance plans (see Chapter 2) (CBO, 2013). In addition, a num- ber of ACA provisions will expand access to cancer care by ensuring that certain health insurance plans cover important benefits, such as preven- tive care, cancer screenings, and routine costs for clinical trials, and by preventing certain health plans from imposing a lifetime dollar limit on most benefits (see Annex 2-1 for a more detailed description of the ACA). For example, insurance plans being offered through the Health Insurance Marketplaces will be required to cover essential health benefits, although 2  PatientProtection and Affordable Care Act, Public Law 111-148, 111th Congress, 2nd Sess. (March 23, 2010).

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312 DELIVERING HIGH-QUALITY CANCER CARE the federal government has given states flexibility in determining which health benefits to designate as “essential” (HealthCare.gov, 2013a). Medi- care must also cover annual wellness visits without cost sharing and fully cover many services recommended by the U.S. Preventive Services Task Force (Koh and Sebelius, 2010). Moreover, the ACA filled in the Medicare Part D prescription drug coverage gap, often called the “donut hole” (Koh and Sebelius, 2010). Much of the ACA has not yet been implemented and its full impact on access to cancer care is unknown. The Congressional Budget Office estimates that approximately 90 percent of the nonelderly population will be insured by 2022 (CBO, 2012a) and the ACA could reduce the underin- sured population by 70 percent (Schoen et al., 2011). A number of individuals, however, will likely remain uninsured or underinsured. Due to the Supreme Court ruling on the ACA, states may opt out of the Medicaid expansion provision of the law that increases the eligibility for Medicaid to people with incomes of up to 138 percent of the federal poverty level (FPL).3 As of June 2013, 23 states and the District of Columbia plan to expand their Medicaid programs, 6 states are undecided, and 21 are not expanding their Medicaid program at this time (KFF, 2013). Although individuals between 100-138 percent of the FPL will be eligible for federal subsidies for coverage through the state health insurance Marketplaces, individuals below 100 percent of the FPL are not eligible for these subsidies (Kenney et al., 2012; Price and Eibner, 2013). Taking into account the states that are not expanding Medicaid, es- timates suggest that around 30 million individuals will remain uninsured (CBO, 2013; Nardin et al., 2013). The uneven expansion of Medicaid may perpetuate disparities in access based on state of residence. Many of the remaining uninsured will be working age individuals (around 60 percent will be age 18-44) (Nardin et al., 2013). In addition, underinsurance may persist, placing people at risk for unaffordable health care costs, financial stress, and the inability to access high-quality cancer care (Schoen et al., 2008, 2011). The ACA includes a number of provisions to monitor the effect of the law’s implementation on access to care. This will enable future ef- forts to improve patients’ access to cancer care to be narrowly tailored to address the remaining gaps in health insurance coverage. It will also be important for researchers to study the impact of the ACA on patients’ cancer outcomes because patients’ outcomes may be influenced by their access to care. 3  National Federation of Independent Businesses v. Sebelius, 132 S. Ct. 2566 (June 28, 2012).

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ACCESSIBLE AND AFFORDABLE CANCER CARE 313 Improve Access for Vulnerable and Underserved Populations Health insurance coverage does not ensure individuals high-quality care (IOM, 2009a; IOM and NRC, 1999). Even after the ACA is fully imple- mented, it is likely that many cancer patients will continue to experience problems accessing the care they need. This report uses the phrase “vul- nerable and underserved” to describe people who may have difficulty ac- cessing high-quality cancer care. Vulnerable and underserved populations include, but are not limited to • Racial and ethnic minorities • Older adults • Individuals living in rural and urban underserved areas • Uninsured and underinsured individuals • Populations of lower socioeconomic status In addition to health insurance coverage, other factors that impact pa- tients’ access to cancer care include (1) affordability of care (e.g., financial resources, cost of health care, childcare, transportation, and productivity reduction [absenteeism and presenteeism4], as well as loss of employment due to cancer); (2) health care delivery system attributes (e.g., geographic distribution of cancer care facilities, hours of availability for patient care, or strength of service coordination); (3) patient attributes (e.g., percep- tions of cancer prevention and treatment, lack of information, health literacy, language, or cultural factors); and (4) clinician attributes (e.g., communication style, cultural and language competencies, and treatment knowledge/expertise) (IOM and NRC, 1999). The IOM has made numerous recommendations to improve access and care for individuals who are vulnerable and underserved (IOM, 1993, 1999, 2001, 2003, 2004, 2009a; IOM and NRC, 1999). The IOM report Crossing the Quality Chasm: A New Health System for the 21st Century (2001) included equity—defined as “providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status”—as a major domain of high-quality care (IOM, 2001, p. 6). In Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, the IOM recommended a series of interven- tions designed to eliminate health care disparities that targeted legal, regulatory, and policy issues; health system issues; patient education and empowerment; cross-cultural education in health professions; data col- lection and monitoring; and research needs (IOM, 2003). Ensuring Quality Cancer Care recommended that the research community focus on under- 4  Presenteeism is attending work while sick.

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314 DELIVERING HIGH-QUALITY CANCER CARE standing why specific segments of the population (e.g., racial and ethnic minorities and older patients) often do not receive appropriate cancer care (IOM and NRC, 1999). The IOM report The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999) recommended improvements to National Institutes of Health (NIH) programs and priority setting to achieve greater involvement of ethnic minorities and medically underserved populations in cancer research. The federal government has undertaken significant efforts to collect data on the nature and impact of disparities for vulnerable and under- served populations. For example, the U.S. Department of Health and Hu- man Services’ (HHS) Healthy People 2020 (2013a) tracks health outcomes across a number of demographic factors, including race and ethnicity, gender, sexual identity and orientation, disability status or special health care needs, and geographic location. Healthy People 2020 aims to achieve health equity (defined as the attainment of the highest level of health for all people), eliminate disparities, and improve the health of all groups (HHS, 2010). The Agency for Healthcare Research and Quality (AHRQ) publishes a yearly, congressionally mandated national health care dispari- ties report (AHRQ, 2012b). The most recent report includes more than 250 measures of disparities, including some cancer-specific measures, and found that access did not improve for most vulnerable and underserved populations from 2002 to 2008; of the 250 measures, 50 percent showed no improvement and 40 percent of measures were getting worse (AHRQ, 2012c). Similarly, the NCI’s Surveillance, Epidemiology, and End Results (SEER) cancer registry expanded to collect information on diverse popu- lations and it routinely reports cancer statistics by race, ethnicity, age, gender, and geography (NCI, 2013j). Although the pervasiveness of disparities among vulnerable and un- derserved populations in the United States has been well documented, less progress has been made in eradicating these disparities (Spinks et al., 2012; Wallerstein et al., 2011). The ACA includes multiple provisions designed to improve patients’ access to care and reduce disparities for vulnerable and underserved pop- ulations. These include establishing the Community Health Center Fund and the Prevention and Public Health Fund; reauthorizing the Patient Navigator and Chronic Disease Prevention grants; and expanding fund- ing for the National Health Service Corps (see Annex 2-1 for a descrip- tion of these programs). The ACA has mandated that all federally funded health care or public health programs collect and report data on race, ethnicity, sex, primary language, and disability status. It also elevated the National Center on Minority Health and Health Disparities to the level of an institute within NIH, granting the center the authority to develop

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ACCESSIBLE AND AFFORDABLE CANCER CARE 315 and evaluate all health disparities research conducted and supported by NIH, and to coordinate NIH’s health disparities strategic plan and budget (IOM, 2012b; NIH Record, 2010). Many public and private efforts are also under way to improve pa- tients’ access to care and address disparities for vulnerable and under- served populations (see Annex 8-1). For example, HHS created an action plan to reduce health disparities by transforming health care; strengthen- ing infrastructure and workforce; advancing health, safety, well-being, and innovation; and increasing efficiency, transparency, and accountabil- ity (HHS, 2011). This plan was designed to complement the efforts of the National Partnership for Action to End Health Disparities, which was es- tablished to “mobilize a nationwide, comprehensive, community-driven, and sustained approach to combating health disparities and to move the nation toward achieving health equity” (NPA, 2011, p. 1). Annex 8-1 also describes a number of additional efforts that aim to reduce barriers in ac- cess to health care for vulnerable and underserved populations, such as the NCI and C-Change’s involvement in patient navigation. The barriers impeding patients’ access to care are often specific to the communities in which the patients live, and thus, the solutions to address those barriers are most likely to emerge from the communities. Some of the most promising efforts to improve access to care for vulnerable and underserved populations involve federal initiatives that focus on support- ing community interventions. The Coordinated Federal Action Plan to Reduce Racial and Ethnic Asthma Disparities exemplifies a federal government effort to facilitate community interventions designed to improve access for vulnerable and underserved populations (President’s Task Force on Environmental Health Risks and Safety Risks to Children, 2012). Major components of the plan focus on evaluating partnership models that engage communities, identifying and targeting disparate populations, and providing compre- hensive, integrated care at the community level. Similarly, HHS’ Million Hearts® Initiative works to prevent heart disease and stroke by improv- ing access and quality of care through cardiovascular disease prevention activities coordinated across the public and private sectors (HHS, 2013b). The Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) are co-leading the Million Hearts® Initiative, along with the American Heart Association, the YMCA, and many other community organizations, with the goal of preventing one million heart attacks and strokes by 2017. In July 2013, President Obama signed an executive order announcing the HIV Care Continuum Initia- tive to mobilize and coordinate federal efforts to prevent and treat HIV infection (White House, 2013a). Many of the activities of the initiative will involve federal-level support of community-level programs, including

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316 DELIVERING HIGH-QUALITY CANCER CARE capacity building among community health centers, health departments, community-based organizations, and health care organizations (White House, 2013b). Several organizations discussed in Annex 8-1 are also focusing on community-specific interventions to improve access and reduce dispari- ties. C-Change’s Geographic Intervention Project, for example, is develop- ing a community-based process for addressing health care disparities that can be leveraged by other communities. Similarly, the CDC’s Racial and Ethnic Approaches to Community Health (REACH) program provides funding for communities to implement and evaluate community-based approaches to improve health (CDC, 2012). REACH is a part of the CDC’s Healthy Communities program, which provides tools that support com- munity action and convenes action institutes to help community leaders make policy, system, and environmental changes that aim to prevent chronic disease (CDC, 2011a). Given the promise of federal initiatives that support community interventions, the committee recommends that HHS develop a national strategy to reduce disparities in access to cancer care for vulnerable and underserved populations by leveraging existing efforts by public and private organizations. As part of this strategy, the committee recom- mends that HHS (1) support the development of innovative programs, (2) identify and disseminate effective community interventions, and (3) provide ongoing support to existing successful community interven- tions (Recommendation 9). An important focus of the national plan should be the dissemination of successful community interventions that improve access to high-qual- ity cancer care for vulnerable and underserved populations. HHS’ role in disseminating successful community interventions could help other communities identify potential strategies that could be evaluated for their unique local environment and population. HHS should also help ensure the sustainability of successful community interventions. The commit- tee recognizes that ongoing support will require substantial resources. Savings derived from other changes to the cancer care delivery system recommended by the committee may offset some of these costs. Affordable Cancer Care The affordability of care is equally important to a high-quality cancer care system. As mentioned in Chapter 2, the United States is currently fac- ing unsustainable growth in the cost of cancer care and the rising costs of cancer care are negatively impacting patients and their families (Bernard et al., 2011; Cohen et al., 2013; Ramsey et al., 2013; Shankaran et al., 2012; Zafar et al., 2013). This section explores the perverse incentives in the cur-

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ACCESSIBLE AND AFFORDABLE CANCER CARE 317 rent reimbursement system for cancer care and presents three strategies for achieving affordable cancer care, while maintaining or improving the quality of care: • eliminating waste in the cancer care system by engaging clinicians and payers; • incentivizing affordable, high-quality cancer care by realigning the reimbursement system to reward high-quality, affordable can- cer care; and • designing insurance benefits that enable patients to take an active role in choosing affordable, high-quality cancer care that aligns with their needs, values, and preferences. These strategies have the potential to make cancer care more affordable for patients by reducing the incentive for clinicians to provide more (or more expensive) care that does not improve patient outcomes and by lowering patients’ cost sharing for high-quality cancer care. Given the challenges to defining value in cancer care (see Box 8-1), the committee purposefully chose to frame its discussion in terms of high- quality and affordable cancer care. Challenges in Cancer Care Reimbursement The most common form of financial reimbursement for health care in the United States is fee-for-service reimbursement.5 Fee-for-service reim- bursement incentivizes the volume of services provided by clinicians or hospitals, but typically overlooks quality or efficiency of care (CEA, 2009; Etheredge, 2009; IOM, 2012a,c, 2013a). For example, the IOM report Best Care at Lower Cost: The Path to Continuously Learning Health Care in America concluded that fee-for-service reimbursement does not reward clinicians for the quality of care they provide, and encourages wasteful and ineffec- tive care (IOM, 2012a). In the cancer care setting, fee-for-service reimbursement incentivizes clinicians to provide patients with interventions, even if there is a lack of evidence to show that those interventions improve patient outcomes. It also incentivizes clinicians to prescribe more expensive chemotherapy and recommend more costly methods of delivering radiation therapy, surgery, or imaging, irrespective of the benefits to patients (IOM, 2013a). One survey found that oncologists derive three-quarters of their practice revenues from chemotherapy drug charges (Akscin et al., 2007). 5  Fee-for-servicereimbursement is a financing methodology in which clinicians are reim- bursed for each individual procedure or patient encounter (IOM, 2006).

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318 DELIVERING HIGH-QUALITY CANCER CARE BOX 8-1 Defining Value in Cancer Care Defining value in health care is challenging. Many definitions and concepts of value have been suggested. The basic premise of value is that it represents the quality of care relative to the cost of care. Value is created in care when outcomes improve and costs are maintained or when costs are reduced and outcomes are not adversely impacted. Many attempts have been made recently to describe value in cancer care (Feeley et al., 2010; IOM, 2009b; Ramsey and Schickedanz, 2010). A 2009 Institute of Medicine (IOM) workshop on value in cancer care outlined attributes and metrics of value. Based on this workshop, Ramsey and Schickedanz (2010) suggested that “an intervention in cancer care can be described as having value if patients, their families, physicians, and health insurers all agree that the benefits afforded by the intervention are sufficient to support the total sum of resources expended for its use” (p. 2). Other groups within the IOM have also grappled with how to define value in health care. The Committee on Geographic Variation in Health Care Spending and Promotion of High-Value Health Care defined health care value as equivalent to net benefit: “the amount by which overall health benefit and/or well-being produced by care exceeds (or falls short of) the costs of producing it” (IOM, 2013b, p. 11). The IOM Roundtable on Value & Science-Driven Health Care held a workshop on value in health care, but concluded that “no single consistent definition of value was identified by the participants” (IOM, 2009d, p. xv). The U.S. Department of Veterans Affairs (VA) has used a value equation in its quality improvement efforts, which is expressed as a ratio of outputs to inputs. Inputs include the financial resources of the VA, while outputs include technical quality of care, access to services, patient functional status, patient satisfaction, and community health (Perlin et al., 2004). The Affordable Care Act used the term “value” more than 200 times, yet never defined the term. The Agency for Healthcare Research and Quality (2010) refers to improving value by reducing unnecessary costs (waste) and increasing ef- ficiency while maintaining or improving health care quality. The United Kingdom’s Previous changes in the way oncologists were reimbursed for che- motherapy administration, such as the enactment of the Medicare Pre- scription Drug, Improvement, and Modernization Act, have influenced which drugs oncologists prescribe (Jacobson et al., 2006, 2010) (see also Box 8-2). A substantial number of oncologists in fee-for-service practice have reported that their income increases from administering chemother- apy or hematopoietic growth factors (Malin et al., 2013). At the same time, other important aspects of cancer care are not well compensated, such as

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ACCESSIBLE AND AFFORDABLE CANCER CARE 319 National Institute for Clinical Excellence applies the concept that the value of treat- ment is based on scientific value judgments, including a clinical evaluation and an economic evaluation, and social value judgments, including considerations of efficiency and effectiveness (Rawlins, 2004; Rawlins and Culyer, 2004). Porter and Teisberg have defined value in health care as the health outcomes per dollar expended (Porter and Teisberg, 2006). This definition is premised on achieving the best possible outcomes as efficiently as possible (Lee, 2010). It places the responsibility for health reform on clinicians and assumes that the purpose of the health care system is not to minimize costs, but to deliver value to patients—in other words, better health per dollar spent (Porter and Teisberg, 2007). Porter and Teisberg suggested seven essentials of value-based competition in health care delivery, frequently called the value proposition in health care delivery (Feeley et al., 2010): 1.  et the goal as value for patients; not access, equity, volume, convenience, S or cost containment. 2.  uality improvement is the key driver of cost containment and value im- Q provement, where quality equals health outcomes. 3.  are delivery should be organized around medical conditions over the full C cycle of care. 4.  rovider experience, scale, and learning at the medical condition level drive P value improvement. 5.  are must be integrated across facilities and geography, rather than dupli- C cating services within stand-alone units. 6. One must measure and report outcomes and costs for every provider for every medical condition. 7. Reimbursement must be aligned with value, and, furthermore, innovation needs to be rewarded. A crosscutting principle of a value-based delivery system is that there needs to be an information technology platform that enables all aspects of the system to function as efficiently as possible. cognitive care6 provided by physicians and support services offered by nurses, psychologists, chaplains, or social workers in cancer care (IOM, 2009b; Smith and Hillner, 2011) (see also Chapter 3). The extent to which oncologists in fee-for-service practice have been using the profit margins on chemotherapy to finance other uncompensated care is unknown, al- 6  Cognitive care refers to evaluation and management services, which entails time spent discussing, for example, prognosis and treatment options (Smith and Hillner, 2011).

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ACCESSIBLE AND AFFORDABLE CANCER CARE 351 ANNEX 8-1 EXAMPLES OF ONGOING ACTIVITIES DESIGNED TO IMPROVE ACCESS TO CARE FOR VULNERABLE AND UNDERSERVED POPULATIONS Activity Description Department of Health and Human Services (HHS) Action Plan to Reduce The Action Plan outlines goals and actions HHS Racial and Ethnic Health should take to reduce racial and ethnic health Disparities disparities, including promoting integrated approaches, evidence-based programs, and best practices. National Stakeholder The strategy outlines a comprehensive, community- Strategy for Achieving based approach for achieving health equity. It Health Equity provides a common set of goals and action steps that local public and private entities and collaborations may adopt to address racial and ethnic disparities within their communities. Agency for Healthcare Research and Quality (AHRQ) National Healthcare Disparities The yearly report tracks national trends in health Report care disparities. In cancer care, it focuses solely on colorectal and breast cancer in alternating years. The most recent report found that health care quality and access were suboptimal, especially for racial and ethnic minorities and lower income groups. There were disparities with respect to cancer screening, stage of diagnosis, treatment, and death rates among these groups. Centers for Disease Control and Prevention (CDC) Cancer Prevention and Control CPCRN is a network of 10 academic, public health, Research Network (CPCRN) and community partners that span multiple disciplines and geographic regions, and work together to conduct community-based participatory cancer research. Through implementation and dissemination processes, the network aims to accelerate the adoption of evidence-based cancer prevention and control practices within local communities, focusing on underserved populations disproportionately affected by cancer. National Comprehensive Cancer NCCCP provides financial and infrastructural Control Program (NCCCP) support to all 50 states, multiple tribes, and the U.S. Associated Pacific Islands and territories to assist in the development and implementation of comprehensive cancer control plans. continued

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352 DELIVERING HIGH-QUALITY CANCER CARE Activity Description National Program of Cancer NPCR compiles data from local cancer registries Registries (NPCR) within each state. CDC uses this data to identify populations with disparities in cancer care. It also assists states in developing and implementing comprehensive cancer control programs designed to alleviate the disparities in these populations. Racial and Ethnic Approaches to REACH is a national grant program. It provides Community Health (REACH) financial and infrastructural support to awardees in the identification, development, implementation, evaluation, and dissemination of community- based programs, as well as for culturally tailored interventions that aim to eliminate health disparities among racial and ethnic minority populations. It has prioritized efforts that focus on chronic conditions, including breast and cervical cancer. National Cancer Institute (NCI) Cancer Disparities Research CDRP was developed by the Radiation Research Partnership (CDRP) Program Program to strengthen the NCI’s focus on cancer disparities. The CDRP supports institutions conducting radiation oncology clinical trials focused on medically underserved, low-income, and racial and ethnic minority populations by assisting with the planning, development, and conduct of the trials. The program also assists with the development of partnerships between institutions that are not actively involved in NCI-sponsored research and those that are. These partnerships serve to strengthen cancer disparities research and reduce the cancer disparities burden felt by particular populations. Center to Reduce Cancer Health The America Recovery and Reinvestment Act of Disparities (CRCHD) 2009 awarded CRCHD $20 million. It distributed these funds to programs designed to preserve and create jobs, and promote greater scientific impact of research in underserved communities most affected by the recession. In addition, it provided supplemental funds to many of the flagship programs discussed below. Centers for Population Health The Centers fund research assessing the relationship and Health Disparities between the environment, behavior, biology, and health outcomes. The Centers uses a community- based participatory research approach to develop a network of research teams to evaluate the multidimensional nature behind health disparities in cancer.

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ACCESSIBLE AND AFFORDABLE CANCER CARE 353 Activity Description Community Cancer Centers The NCI has partnered with 21 community hospital- Program based cancer centers to create this program. Among the partnership’s areas of focus are researching ways to reduce health disparities in cancer, increasing participation in clinical trials, improving the quality of cancer care, enhancing cancer survivorship, expanding use of electronic health records, and promoting collection of biospecimens to support genomic research. Community Networks Program This program awarded $95 million in 5-year grants to 25 institutions to establish a network of community- based participatory education, training, and research programs among racial and ethnic minorities and other underserved populations. Comprehensive Partnerships to This program established a network of institutions Reduce Cancer Health and NCI Cancer Centers that serve racial, ethnic, and Disparities underserved communities. The goal of the program is to train scientists from diverse backgrounds in cancer research and in delivering cancer care to racially and ethnically diverse communities. Diversity Training Programs The NCI developed diversity training programs through funding from CRCHD to engage underrepresented investigators in cancer research. The programs provide minorities from high school through the junior investigator level with a continuum of competitive funding opportunities. Programs include, for example, the Continuing Umbrella of Research Experiences and Partnerships to Advance Cancer Health Equity. Minority-Based Community MB-CCOP is the component of the Community Clinical Oncology Programs Clinical Oncology Network that is primarily (MB-CCOP) responsible for engaging underserved populations and addressing health disparities in cancer through clinical trials. It has increased access to clinical trials in local communities; recruited many minority participants to clinical trials; and improved researchers’ understanding of how new agents, trial designs, and technologies are disseminated and utilized among minority populations. continued

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354 DELIVERING HIGH-QUALITY CANCER CARE Activity Description National Cancer Institute This program includes a research agenda to address Community Oncology Research cancer disparities. Goals of the research agenda Program (NCORP) include promoting participation of underserved populations in clinical trials and cancer care delivery research, as well as incorporating specific disparities research questions into clinical trials and cancer care delivery research. It prioritizes research that focuses on the potential drivers of cancer disparities, including health care system factors, health-related quality of life, social determinants, environmental and physical determinants, biological factors, behavioral factors, protective and/or resiliency factors, comorbidities, and biospecimen education and collection. Patient Navigation Research This program supports the development and Program evaluation of innovative patient navigation interventions designed to reduce or eliminate health disparities in cancer. Examples of interventions that this program have funded include programs aimed at reducing time between abnormal test results and diagnosis, and improving the quality of cancer care delivery services for cancer patients. American Cancer Society (ACS)a Health Insurance Assistance A free resource that connects cancer patients with Service health insurance specialists who handle inquiries about health insurance coverage and state programs. National Cancer Information This program provides patients with high-quality Center information on treatment options, cancer care facilities, community-based programs, clinical trials, and health insurance coverage. Trained oncology nurses answer patients’ more complex questions. An interpreter services helps address patients’ questions in 160 languages. Patient Navigator Program This program hires and trains patient navigators to provide cancer patients and their families with free, one-on-one assistance and support throughout their cancer care, such as helping with the coordination of travel, referring to health care clinicians, providing assistance with psychosocial needs, identifying childcare resources, and recommending sources of financial assistance. Patient navigators are in 122 sites nationwide, with a concentration in public hospitals.

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ACCESSIBLE AND AFFORDABLE CANCER CARE 355 Activity Description Transportation Programs The Road to Recovery Program provides a network of volunteer drivers who provide low-income cancer patients with transportation to and from their treatment. ACS also provides low-income cancer patients with other forms of financial assistance for transportation to and from treatment, including gas cards and tax vouchers. Hope Lodge and Guest Room Provides cancer patients and their caregivers with Program a free place to stay or a low cost hotel room when they must travel for treatment. Currently, there are 31 Hope Lodge locations throughout the United States. Accommodations and eligibility requirements vary by location. American Society of Clinical Oncology (ASCO)b Disparities Research ASCO is working with key stakeholders in the cancer community to delineate where future research efforts in cancer disparities should be focused, both in terms of methodology and specific interventions. The resulting work will be developed into a monograph, or series of papers, identifying top research needs, especially in areas of research that have traditionally been underfunded. Education ASCO regularly offers educational sessions at its annual meeting designed to help clinicians understand disparities in cancer care. It also offers an expanding array of educational content for providers on ASCO University, as well as resources for patients on Cancer.Net. Policy and Advocacy ASCO recently released a policy statement summarizing provisions of the Affordable Care Act that may help alleviate health disparities in cancer care. The statement outlines specific strategies that clinicians can apply to address the barriers to the most vulnerable patient populations accessing high- quality cancer care. In addition, ASCO is developing a policy statement that will make recommendations for ensuring that Medicaid patients have access to high-quality cancer care. Quality Improvement ASCO’s Quality Oncology Practice Initiative (QOPI) includes a focus on health equity by capturing practice-level information on race/ethnicity, socioeconomic/insurance status, and cultural competency. In addition, ASCO is seeking to assist practices that serve vulnerable and underserved patients with participating in QOPI. continued

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356 DELIVERING HIGH-QUALITY CANCER CARE Activity Description Workforce Diversity ASCO has developed and implemented two efforts to diversify the workforce caring for individuals with cancer. The Diversity in Oncology Initiative is an awards program designed to facilitate the recruitment and retention of individuals from populations underrepresented in medicine into careers in oncology. The awards provide individuals the opportunity to participate in an 8- to 10-week clinical or clinical research oncology rotation; pay for individuals to travel to and attend ASCO’s Annual Meeting; and repay student loans in exchange for 2 years of service in a medically underserved area. The Diversity Mentoring Program provides physicians who are early in their training and from populations underrepresented in medicine with an oncology mentor. It is designed to encourage these individuals to pursue a career in oncology. C-Changec Geographic Intervention Project C-Change is partnering with local and national organizations to intervene in communities disproportionately affected by four major preventable cancers (breast, cervical, colorectal, and lung). Its first intervention is currently under way in a Mississippi community and will likely involve training lay navigators to guide cancer patients through the cancer care delivery system. The goal of this program is to develop a community-based process of addressing health disparities that is transferable to other communities. Messaging Project C-Change worked with a communications firm to develop and test audience-specific messages and associated messaging tools on health disparities in cancer. This project is intended to ensure that C-Change and its membership organizations’ communications about health disparities in cancer resonate with the public and policy makers. The overarching goal is to heighten the public’s concern about health disparities in cancer care.  a Personal communication, Angelina Esparza, American Cancer Society, May 6, 2013.   b Personal communication, Dana Wollins, American Society of Clinical Oncology, March 21, 2013.   c Personal communication, Tasha Tilghman-Bryant, C-Change, March 21, 2013. SOURCES: ACS, 2013a,b,c; AHRQ, 2013; C-Change, 2013; CDC, 2011b, 2012; CPCRN, 2013; Goss et al., 2009; HHS, 2011; McCaskill-Stevens and Clauser, 2012; Moy et al., 2011; NCI, 2013a,b,c,d,e,f,g,h,i; NPA, 2011.