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1 Complexity: From Cells to Society
Pages 11-62

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From page 11...
... . In the past century, cancers have become a very prominent threat to population health, in large part because people live long enough to have a higher likelihood of developing some type of cancer.
From page 12...
... In health and medicine, National Academies publications have offered recommendations for national strategies to address HIV/AIDS and hepatitis and to prioritize health technologies such as vaccines. To develop a national strategic vision for cancer control, the National Acad emies appointed an ad hoc committee of individualsa with a range of expertise and experiences, including epidemiology, clinical oncology, palliative care, cancer outcomes and survivorship, economics, ethics, evolutionary biology, engineering, and executive administration.
From page 13...
... Supportive services can help patients and their family members deal with a variety of psychosocial stresses, such as the depression that may accompany a cancer diagnosis or an extended course of treatment. "Palliative care" is focused on addressing the symptoms of cancer and the side effects of treatment, such as pain and nausea.
From page 14...
... In recent years, as more patients are surviving a cancer diagnosis for long periods of time, many efforts have also focused on "survivorship care" to address the long-term and delayed effects from cancers and cancer treatment. From Cures to Control Formal policy approaches to reducing the cancer burden in the United States can be tracked back to 1928, when the U.S.
From page 15...
... CANCER BURDEN AND DISPARITIES Cancer control efforts face a vexing challenge due to the rapidly growing numbers of older people in the United States. As shown in 3 The term "cure" is typically used to describe an outcome of a treatment where there are no traces of the cancer and where the cancer will never come back.
From page 16...
... , and expenditures on biopharmaceuticals and various care services have been growing. The financial burden of cancer care falls on a relatively small part of the 4 See Table 3: Total expenses and percent distribution for selected conditions by type of service: United States, 2014.
From page 17...
... Nonreimbursed cost sharing for cancer care often leaves patients and their families with considerable debt as the percentage of cancer care costs fully paid for by insurance has been shrinking, and some patients may lack insurance altogether. One-third of patients undergoing cancer treatment go into debt (Banegas et al., 2016)
From page 18...
... breast cancer (female)
From page 19...
... One obvious issue is how to allocate health care FIGURE 1-4  Adult smoking prevalence in 2016 (A) and lung cancer mortality rates 2011–2015 (B)
From page 20...
... 20 FIGURE 1-5  Ten leading sites of new cancer cases and deaths -- 2019 estimates. SOURCE: Siegel et al., 2019.
From page 21...
... Moreover, there has been reluctance in the United States to adopt any scheme for stratification of access to care based on objective analyses of economic and clinical performance that might impose potential limits on care, a subject of intense political and media debate. Cancer patients may face their own trade-offs, often having to decide between cancer treatment costs and meeting their other obligations, including other medical care (in addition to cancer care)
From page 22...
... Understanding this complexity is the first step to being able to transform cancer control efforts to achieve more effective outcomes at a lower cost for both society and individuals. Classifications Cancers vary widely from patient to patient, differing in the types of tissue affected, their causes and underlying biological mechanisms, their prognosis, and the most effective type of treatment.
From page 23...
... The challenge for those interested in reducing the cancer burden is to recognize that every approach to grouping cancers has limits and to develop strategies that can incorporate novel and effective ways of classifying, understanding, preventing, diagnosing, and treating cancer in order to gain the most comprehensive view possible -- a subject that is discussed in detail in the latter sections of this report. Representative Risk Factors Another factor contributing to the difficulty of reducing cancer burden is the wide variety of things that can increase the risk of different types of cancer.
From page 24...
... . Risk factors can interact to increase or decrease the likelihood of developing cancer in various ways, complicating cancer control efforts.
From page 25...
... FIGURE 1-6  An individual-centric cancer control continuum reflecting a linear sequence of cancer control steps. Many external forces, including an aging population and financial constraints on individuals and society, have effects on this continuum.
From page 26...
... have expanded, starting with an increased awareness of various healthrelated behaviors that can be modified to reduce cancer risk and then with advances in chemoprevention, immunization, and prophylactic surgery, as in mastectomy in women at high risk for breast cancer (see Box 1-2)
From page 27...
... Surgery, radiation therapy, chemotherapy, targeted therapies, and immunotherapies have all played a significant role in advancing life-extending treatments5 (the fourth block in the continuum; see 5 A 2018 opinion survey from the American Society of Clinical Oncology noted that nearly 4 in 10 people in the United States believe that cancer can be "cured solely" through alternative therapies (ASCO, 2018)
From page 28...
... . This spectrum also captures a strong coupling between "treatment" and "survivorship." Cancer care has now progressed to the point that 6 There is no uniform or universally accepted definition of who a cancer survivor is (IOM, 2006b)
From page 29...
... Cancer survivorship is often accompanied by long-term or delayed effects of treatment. The sixth block of the continuum is hospice care (IOM, 2015)
From page 30...
... . Approaches are being developed to manipulate the human immune system to counter the complex adaptive capabilities of cancer cells by inhibiting immune checkpoints that prevent the body from attacking a cancer or through specific antibodies against cancer cells.
From page 31...
... For example, one early study showed that whether a patient received recommended radiation therapy for breast cancer was associated with whether the patient was enrolled in a health maintenance organization versus fee-for-service insurance plan (Riley et al., 1999)
From page 32...
... The continuum can thus be criticized for engendering an unrealistic expectation of how individuals ultimately progress through cancer care; misperceptions of cancer care as a time-limited event rather than as an ongoing life experience can be detrimental in how cancer risk factors (and prevention) are communicated to the public and to the survivor community in particular.
From page 33...
... . The state of pediatric cancer survivorship care also requires specific clinical competencies.
From page 34...
... (Steward and Brown, 2013) Screening, - Effectiveness of certain - Measures to improve uptake of Detection, and screening tests for most types effective screening, detection, Diagnostics of breast, colorectal, cervical, and diagnostic strategies and lung cancers (Smith et al., (O'Dowd and Baldwin, 2017)
From page 35...
... - Improving quality of life - Effective radiotherapy to following treatment contour cancerous tissues - Establishing guidelines for while sparing normal tissues delivering less aggressive care - Improved management of side - Strategies to mitigate cost effects (Spallarossa et al., 2018) burdens for patients diagnosed with cancer - Strategies to improve efficiency, reproducibility, and cost of cancer clinical trials Survivorship - Approaches to preserve - Better management of long functionality and reproductive term psychosocial effects of potential following treatment diagnoses and treatment - Measures to alleviate side - Role of diet and nutrition effects - How to improve communication with family members of inherited cancer risk - Full potential of cancer survivorship care plans (Jacobsen et al., 2018)
From page 36...
... For example, one analysis using multiple data sources (principally the Behavioral Risk Factor Surveillance System Survey and Breast Cancer Surveillance Consortium data) and modeling assumptions estimated the annual total cost of breast cancer screening to be $7.8 billion (O'Donoghue et al., 2014)
From page 37...
... , to tobacco control efforts, to a range of chronic disease prevention and control activities, and to total spending by the states on cancer prevention and control activities. Total ­National Institutes of Health spending on "cancer" research (basic, clinical, translational, and population sciences)
From page 38...
... Because it is highly likely that some nonprofits that are not expressly cancer-designated provide services or assistance to cancer patients and their families and because all relevant nonprofits in the nation may not be included under the Charity Navigator broad category of "Health," a total annual estimate of $3 billion was regarded as a reasonable upper bound. 10 This rounded estimate of $600 billion was arrived at by thus summing direct medical cost ($173 billion)
From page 39...
... Nevertheless, a significant move toward paying for quality and value is under way in cancer care. Even if one knew exactly what constitutes and how best to measure both quality and value, cancer control in the clinical setting remains a multispecialty effort.
From page 40...
... . Although these models can be useful in understanding certain aspects of cancer control, they are unable to holistically view cancer control efforts to obtain an overall perspective on the collective behavior of the numerous participants in the ecosystem.
From page 41...
... To overcome the limitations of the current systems-based approaches to cancer control, the committee focused on the concept of a "complex adaptive system." This concept is described in more detail in the following sections, but in broadest terms, a complex adaptive system is a system consisting of individual entities that act to advance their own interests at many levels and that interact with one another, modifying their behavior in response to what is happening in the rest of the system. A cell is an example of a complex adaptive system.
From page 42...
... The U.S. cancer control system is, like cancer itself, a complex adaptive system.
From page 43...
... Thus, the cancer control continuum depicted in Figure 1-6 is describing the process of cancer control, from prevention efforts to diagnosis and treatment to hospice care, while the system of cancer control consists of all the health professionals, hospitals and other medical facilities, biopharmaceutical and device companies, payers, consumer technology and computing firms, research
From page 44...
... No single entity can command charge." Consequently, the behaviors of change. A portfolio of motivations, incentives, complex adaptive systems can usually be and disincentives is needed but would be more easily influenced than controlled.
From page 45...
... The cancer control continuum, for example, is sometimes referred to as depicting the system of cancer control rather than the process. This is understandable because the word "system" can be used in both ways -- as a collection of components that make up a whole or as a set of rules or procedures for how something is done.
From page 46...
... And it is complex in that the overall performance of the system cannot be understood in terms of the behavior of the individual entities in isolation but rather is inherently the product of interactions between the different entities, which themselves are constantly changing and adapting to one another. One straightforward example of a complex adaptive system in practice is the nation's cargo transportation system.
From page 47...
... Perhaps the most important thing to note about the complex adaptive system of cancer control is that there is no hierarchical command-andcontrol structure, with someone at the top making decisions and issuing orders that are followed down the hierarchy; instead, there are multiple entities, each with its own goal and acting in ways that are calculated to advance those goals. Generally speaking, these various entities all agree on the general goal -- to reduce the burden of cancer -- but they have varying interpretations of exactly what that goal means; they have their own individual approaches, scale, and scope to attaining that goal; and they usually have additional objectives that are not necessarily related to that overarching goal.
From page 48...
... Figure 1-7 is a descriptive illustration of cancer control as a complex adaptive system composed of multiple subsystems. It displays the level of complexity imposed on cancer control efforts by a range of interacting biological and environmental factors that drive cancer risk, randomness, emergence, and progression.
From page 49...
... genome Policy; Tumor  Affordability and perturbation Priority setting; subtypes; availability of  Environmental Cumulative Resources products and services and Different analyses and exposures  Disparities in care Combinatorial progression allocation;  Drug metabolism and outcomes risks patterns; Performance polymorphisms  Survivor care Therapeutic metrics and  Human leukocyte  Palliative care and antigen responses tracking for hospice care polymorphisms and accountability neoantigen  Policy and presentation regulation  Socio-economic and  Public- and private cultural determinants  Clonal diversification and genotypic and phenotypic heterogeneity sector investment  Microbiome  Tumor clonal interactions and competition  Advocacy  Host immune system: tumor interactions  Treatment effects on tumor clonality and immune responses FIGURE 1-7  Cancer control as a complex adaptive system comprising multiple complex adaptive systems and major high-level parameters that contribute to complexity in three domains: individual risk, the complexity of tumor–host interactions in tumor progression, and the complexity of implementation of control efforts across the cancer continuum. Additional levels of complexity are imposed by the large dynamic ranges of the interacting biological and environmental factors and control efforts as well 49 as randomness.
From page 50...
... One way to assess the return on the investment would be to consider changes in population health outcomes attributable to cancer prevention and care strategies and to relate these changes to different types of cancer control expenditures. As noted earlier, age-adjusted cancer mortality rates have declined over the past several decades, thanks in part to new cancer screening tests, diagnostics, and treatments as well as to changes in population behaviors that have taken place.
From page 51...
... Finding 1-6: The cancer control continuum includes activities from recognizing cancer risks to diagnosis and treatment to hospice care, but in practice the sequence of activities is not integrated effectively, with possible adverse consequences for patients, including disparities in outcomes. Finding 1-7: The key differences between the "process" of cancer control and the "system" of cancer control are not widely appreciated.
From page 52...
... 2017. The state of cancer care in America, 2017: A report by the American Society of Clinical Oncology.
From page 53...
... 2016. American Cancer Society head and neck cancer survivorship care guideline.
From page 54...
... 2015. American Cancer Society colorectal cancer survivorship care guidelines.
From page 55...
... 2013. The cost of breast cancer screening in the Medicare population.
From page 56...
... 2018. Systematic review of the impact of cancer survivorship care plans on health outcomes and health care delivery.
From page 57...
... Journal of Cancer Survivorship 10(5)
From page 58...
... 2011. Projections of the cost of cancer care in the United States: 2010–2020.
From page 59...
... 2018. Clinical practice guidelines for quality palliative care, 4th ed.
From page 60...
... 2016. American Cancer Society/American Society of Clinical Oncology breast cancer survivorship care guideline.
From page 61...
... 2014. American Cancer S ­ ociety prostate cancer survivorship care guidelines.
From page 62...
... JNCI: Journal of the National Cancer Institute 100(24)


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