When one examines the approaches in cancer control to this point in time, the most obvious characteristic—besides the size and scale—is the complexity. The system of cancer control in the United States—and to some extent worldwide—has developed unevenly over time, with contributions from different people and groups focusing on various aspects of cancer. Clinical and biomedical researchers experimented with different approaches to preventing, detecting, and treating the disease, gradually settling on current practices. Biomedical scientists and engineers set out to understand the biological underpinnings of cancer in hopes of finding insights into its prevention and treatment. Biopharmaceutical companies searched for and developed drugs that would be effective against cancer while confronting the market realities of high risks and failures. Population health specialists sought to identify and modify environmental and behavioral risks that were contributing to cancer. Federal agencies, state legislatures, and local governments provided plans and regulations intended to direct cancer control efforts. Advocacy groups and professional associations added their voices, driving certain policies and approaches to help individuals with cancer or at risk of cancer.
The result has been a sprawling, mostly uncoordinated system that falls far short of the ideal in a variety of ways. There is, for example, no uniform way to examine the expenditures or to assess the various research outputs to determine reliable evidence for cancer control, decide on priorities, and then move forward in concert with those priorities. Ideally, for instance, one would want research funders and policy makers
to have a way to determine the best allocation of resources among the various prevention, treatment, or other efforts and to push the system toward that allocation; there is no way to do that today. Even if it was known how to do this precisely and judiciously, the fragmentation of the current system and its constituent processes and interests do not permit the kind of resource analyses and allocation needed to maximally benefit patients and society at large. More generally, it would be desirable to have an established method for studying the various trade-offs that exist in cancer control, to help decide which trade-offs are in the best interests of population health.
Another major shortcoming of the current cancer control efforts is the presence and possible perpetuation of wide disparities across populations. Not only do certain cancers affect some populations at greater rates than others, but the care provided for certain populations is often less timely and less effective. Furthermore, competition for resources can leave issues important to disadvantaged groups without adequate support because they often do not get the same attention as those that are important to other, more advantaged groups.
These shortcomings have roots in the cancer control system itself. Thus, ultimately, addressing these issues will fundamentally require a complex systems engineering approach, a fact that has been the guiding theme of this report. Such an approach, even though well appreciated in concept, could be largely uncharted territory for those currently involved in the front lines of various cancer control activities. There are, however, other areas where such a systems approach is already in effect, and it will be possible to learn from the successes and failures in these areas in working to design a systems approach to improving cancer control for broad benefit.
It is not a new observation that integrated efforts are more effective than uncoordinated ones or that systematic efforts have a greater chance of success than those that are lacking important components. Nonetheless, because of its history, the nation’s cancer control system currently fails to follow an integrated systems perspective, and any substantive evaluation of what is required to materially and accountably improve cancer control in the United States would need to start with this acknowledgment. Thus,
Conclusion 1: Cancer control efforts in the United States have generally been cognizant of the need for integrated and accountable approaches across policies and programmatic operations. This notion has long existed in intent but not in practice.
Conclusion 2: The current divergences in cancer control practices could have adverse impacts on the population health and the global economic standing of the United States. The pursuit of numerous uncoordinated efforts fueled by a variety of missions, rationales, incentives, and interests in the public, private, and other sectors has created a situation in which no clear view of the state and the performance of the cancer control system exists.
Conclusion 3: Practicing cancer control solely as prevention or treatment or cure or palliative care or survivorship services, as has been influenced by the historical patterns of funding and specialization, does not allow for comprehensive systems analyses of trade-offs and investments. These realities have impeded the realization of a cancer control system that can robustly drive down the cumulative costs, disparities, and other burdens imposed by cancers.
Conclusion 4: Complexities and divergences in the practice of cancer control also contribute to the complexities in assessing the costs associated with cancer control efforts. Improved financial accounting and accountability are vital prerequisites and ongoing requirements for making informed decisions in a national cancer control strategy.
Conclusion 5: Cancer control has typically been pursued as a “war,” “conquest,” or “moon shot,” but instead it needs to be recognized and approached in practice as a complex adaptive system whose elements are interactive and influential at multiple levels of society, starting with the individual. This change in mind-set is essential to recognize, reduce, and mitigate risks and make significant progress in diminishing the cancer burden in the United States, a situation challenged by population aging and other demographic factors with no apparent blunting of costs across cancer control activities.
As the goals and performances of the cancer control system in the United States have variably evolved, so have the resulting outcomes that particularly affect disadvantaged populations.
Conclusion 6: The performance of the cancer control system as currently constituted in the United States is nowhere near the best-case scenario in the sense of generating effective outcomes, particularly for vulnerable and disadvantaged individuals. Indeed, the current cancer control system is ill equipped to analyze and address the prevailing disparities across all populations resulting from the economic and other incentives and disincentives in place. The remedy for this requires strong policy action.
Taking actions to guide the innately complex adaptive nature of the cancer control system will first require assembling a sophisticated picture of the entire system, its components, and their interactions in constantly changing environments and from multiple viewpoints and necessarily requiring leadership from the federal government.
Conclusion 7: Experiences gained in the realm of urban planning, national security, aviation, financial services, global supply chain logistics, and flood and infection control programs, among other social priority areas, show expanding appreciation and effective applications of systems engineering techniques. The contrast with cancer control lies in the pragmatic reality that these other sectors have long recognized the need to adopt principles of complex adaptive systems to better understand and respond to multiple constituencies, demands, and time scales.
Conclusion 8: The current processes and systems of cancer control are at best reactive to circumstances. A proactive and progressive planning system for cancer control policies and operations would necessitate a learning mind-set, from individuals to institutions, focused on periodically determining what activities should be initiated, expanded, or terminated, as well as critically analyzing the trade-offs and tracking the consequences of related decisions.
Conclusion 9: Cancer control policies have historically and prominently involved directives from the U.S. Congress or the executive branch. Implementing a national cancer control plan involving multiple federal agencies would need congressional or executive branch action to direct operational and resource integration among the participants and to ensure the agencies do not continue to operate in isolation pursuing their own interests.
Conclusion 10: The design of a single top-down, static blueprint for cancer control programs and operations in the United States is currently neither realistic nor productive. Instead, greater effectiveness in cancer control requires centrally available customizable planning tools that are useful across contexts and that can actively support performance monitoring and accountability reviews. Dynamic data feeds, computational and other capabilities, and interactive visual analytics will be required to provide capabilities to enable the supporting systems analyses.
These conclusions form the basis for the following recommendations.
The committee was charged with developing a national strategy for cancer control. Thus, the recommendations below define the key principles, attributes, methods, and tools needed to achieve the goal of implementing an effective national cancer control plan. It is beyond the scope of this report to lay forth the exact details of a plan—in the spirit of a recipe book—or customize a plan and supply numerical targets for multiple stakeholders according to their interests. Even if this exercise was actually possible within the scope of this study, and the lists were included as part of this report to monitor and guide the national cancer control system in desired directions over specific time ranges, it is very likely that those specifics may not be accepted across the variety of stakeholder groups. Convergent decisions require a convergence in goals across many participants, and these are best thought through and settled in a cooperative format—the main argument of this report. The following recommendations therefore will inherently require joint action and resources with the support of a systems monitoring and planning tool to track the state of cancer control efforts and the resulting changes in health.
While a multi-agency approach may necessarily take some time to come to fruition or may not be seen as a possibility depending on the political circumstances, such an effort would be central to ultimately make significant progress in achieving national goals for cancer control. Coming up with a list of action items for each participant or sponsor—with variable criteria—would have been counterproductive both for this report and the national strategic vision based on a complex adaptive systems engineering approach. Moreover, developing a monitoring and planning tool to support the national strategy will require a major project by a group of stakeholders from across the cancer control system with varied competencies and purviews. No one agency, not even the Department of Health and Human Services (HHS) or major tech companies, would have all the capabilities that will be necessary to design and provide support for a prototype. Therefore, it is vital to involve as many entities with a stake and resources in cancer control in formulation of an adaptive national plan.
RECOMMENDATION A: A U.S. National Cancer Control Plan should principally ensure resource integration and operational coordination across the various components of the cancer control system, and should actively do the following:
- Improve, where feasible, effective, and affordable, the availability of preventive, screening, diagnostic, and therapeutic interventions. Encourage timely palliative care, hospice care, survivorship services, and related social services according to the preferences and values of patients and their families.
- Leverage the advances in and apply “multi-omic” diagnostics to improve therapies and better understand their scientific, clinical, and economic impacts, including their role in creating additional new prospects for cancer control and overall cost reduction.
- Integrate the use of social, behavioral, and other information made possible by the convergence of communication, social media, cognitive, financial, and sensor technologies as well as electronic health records, cancer registries, and insurance claims to establish large-scale interoperable data sources.
- Use cloud computing, machine learning, and artificial intelligence tools for continuous analytics, rapid reporting of trends and patterns, and improved forecasting and performance reviews. Evaluate emerging data-intensive technologies not only for their utility in advancing health and economic parameters but also regarding their ability to protect individual privacy and the security of data systems.
- Apply the tools of complex systems analyses for assessing the “value” of cancer control interventions, establishing robust policy and incentive assessments to guide the development and commercialization of products and services, developing new financing and payment mechanisms that alleviate overall cost burden, and aiding individual patients and their families in making informed decisions about cancer care.
- Minimize the waste and harm stemming from disparate clinical practices, interventions lacking evidence of effectiveness, and conflicting clinical practice guidelines.
- Track and monitor financial links, incentives, and disincentives throughout the processes and systems of cancer control and rigorously require conflict-of-interest disclosures across cancer care, research, and patient advocacy activities.
- Expand and support reproducibility strategies for developing reliable evidence in cancer control from biomedical, clinical, public health, and social science research.
- Discourage direct-to-consumer marketing and advertising of clinical products and services from companies, medical centers, intermediary firms, and other organizations by terminating the tax deductibility of these business expenses. Furthermore, tighten and enforce rules to particularly curb promotional tactics and strategies that are likely to mislead patients about the benefits of products and care services not based on strong evidence.
- Launch and expand public engagement, literacy, and outreach activities, starting with K–12 curriculums and through technology platforms, to broaden the understanding of cancer prevention as an integral component of a healthy life course.
The history of cancer control efforts in the United States prominently features the involvement of the U.S. Congress or the executive branch in launching new or expanded national initiatives. Coordinating a wide range of federal agencies active in cancer control efforts could require congressional action if the participating agencies lack a legislative authority, in which case it is urged that the U.S. Congress provide the direction to implement the following recommendations.
RECOMMENDATION B: A U.S. National Cancer Control Plan should be led by the Department of Health and Human Services in cooperation with the Office of Management and Budget, Department of Education, Environmental Protection Agency, Department of Defense, Department of Veterans Affairs, Department of Housing and Urban Development, Department of Agriculture, Social Security Administration, Department of Labor, Department of Commerce, Office of Personnel Management, Equal Employment Opportunity Commission, and Department of the Treasury. The Government Accountability Office should periodically review and report to the relevant congressional committees about the achievement of goals specified in the plan.
A national cancer control plan will need to include all these federal participants, in particular, in undertaking a comprehensive review of diverse and shifting needs and an integration of available resources and capabilities, with accountability for periodic performance review and reporting annually, with a rigorous review every 3–4 years, similar to the congressionally mandated assessments in other area. While this extensive level of cooperation and collaboration among multiple government agencies and parties may seem daunting, there are precedents for such an approach. The U.S. Global Change Research Program, for instance, involves 13 federal agencies that jointly produce the quadrennial National Climate Assessment. The most recent report in 2018 was produced by a team of more than 300 experts guided by a 60-member Federal Advisory Committee, and it was then extensively reviewed by the public and experts, including federal agencies and a panel of
the National Academy of Sciences.1 Similarly, the National HIV/AIDS Strategy involves the Department of Homeland Security, Department of Defense (DoD), Department of the Interior, Department of Justice, Department of Labor, Department of Education, Equal Employment Opportunity Commission, HHS, Department of Housing and Urban Development, Social Security Administration, Department of State, and Department of Veterans Affairs.
Another example is the NextGen air control system, discussed in Chapter 3, which requires integrative work and ongoing coordination and diligent performance review across many different agencies, particularly involving industrial partnership. And, indeed, the original Apollo “moon shot” that has inspired much of the recent activities in cancer control was a working demonstration of synergy among more than 20 different government agencies operating under a congressional mandate. Other prominent examples include the expectation from the U.S. Congress that 16 U.S. government agencies, comprising DoD and the intelligence sector, work together on national security issues. Similarly, the recommendations from the bipartisan Blue Ribbon Study Panel on Biodefense, which led to the 2018 National Biodefense Strategy from the White House, mandates HHS to implement multi-agency projects.
Moreover, the ultimate success or failure of the national cancer plan will depend on gaining a functional understanding of the nation’s cancer control system and being able to predict how it responds to various interests and pressures. Therefore,
RECOMMENDATION C: In support of the U.S. National Cancer Control Plan, the Department of Health and Human Services and the federal partner agencies should fund and support an independent organization—or a consortium—with principal competencies in systems engineering, industrial design, software development, and information and visual analytics to prototype and develop a publicly available, interactive, and evolvable planning and monitoring tool.
C-1: Periodic consultations with key participants from state and local governments and for-profit and nonprofit sectors should focus on ensuring that data feeds to the planning tool are customized and
1 U.S. Global Change Research Program. 2018. Impacts, Risks, and Adaptation in the United States: Fourth National Climate Assessment, Volume II [Reidmiller, D. R., C. W. Avery, D. R. Easterling, K. E. Kunkel, K. L. M. Lewis, T. K. Maycock, and B. C. Stewart (eds.)]. U.S. Global Change Research Program, Washington, DC.
routinely refreshed and that planning parameters are properly applied and extensively tested for transparency and meaningfulness.
C-2: Leaders from multiple sectors—biomedical, consumer products and services, computing, information technology, financial, transportation, agricultural, and construction—should be engaged through an advisory council mechanism.
It would be counterproductive and economically unfeasible if the various stakeholders each went about developing its own platform; hence the need for a “master version.” An exemplar can be found in the weather forecasting systems of the National Oceanic and Atmospheric Administration; the agency also relies on its own scientific programs and numerous groups like Google, NASA, and local TV stations for disseminating the information broadly. The development of the planning and monitoring tool will need to be overseen by a group of individuals with knowledge and competence in a large variety of areas in business and society (the Federal Aviation Administration’s NextGen Advisory Committee could serve as an initial exemplar for the advisory procedures). The tool will also require as much up-to-date data about the nation’s cancer system as possible, so it will be important, for instance, that each state and territory bring and upload its own data sets—and refresh them periodically on a cloud-based repository for comparisons and meta-reports as well as custom analyses. Large-scale tools such as this one envisioned for cancer control can be seen in regular use elsewhere in applications for monitoring, for example, the economy, financial markets, labor dynamics, classified intelligence, and the manufacturing supply chain.
Assuming that agreement has been reached that developing a guidance system for the existing cancer control system is a worthwhile goal, how might such a guidance system work? The precise details—and even many of the broad characteristics—of such a system will depend on exactly what it is intended to do, but here is one potential approach relating to the planning and monitoring tool.
The possible outputs of the planning and monitoring tool(s) would necessarily include all the cancer-related variables that might be of value to policy makers, including cancer incidence rates and mortality rates, quality-of-life indicators or proxies, the cost of a policy and its effects on the nation’s gross domestic product, workforce productivity gains, and so on. It will be crucial that the inputs to the simulation package of the tool include the various policy actions that are possible to guide the cancer control system, from spending levels on various research and prevention
efforts to policies concerning health insurance (including Medicare and Medicaid), public health campaigns, policies on drug patents and pricing, and environmental carcinogens. The goal of such a tool should be to allow policy makers to get answers to questions of the form “How will instituting policies A, B, and C affect outputs X, Y, and Z?” The linked simulations and visualizations of the tool would make it possible to generate real-time dashboards to compare different approaches to cancer control. With this information in hand, it will be up to decision makers in different areas to compare and decide on which policies to pursue.
Such a suite of simulations could be used in various ways. Suppose, for example, that federal policy makers wished to compare the benefits, broadly defined, of treatment or prevention. The visuals could predict what range of outcomes are possible through treatments (such as immunotherapies) versus public health campaigns to mitigate disease risks (e.g., campaigns to encourage people to get human papillomavirus vaccines) and could also include the effects of various possible non-fiscal government policies (e.g., changes to patent regulations or tax and housing policies). An advantage of the sort of multi-criteria systems analysis described in Chapter 3 is that it could take into account many different factors of interest to stakeholders.
Another potential use could be to look for the policies that would have the greatest effect on reducing disparities in cancer burden. With a simulated output that included details about various cancer-related differences among socioeconomic groups, such as behavioral differences (alcohol consumption, as an instance), differences in health insurance coverage, differences in treatments and their adherence, and also details about what sorts of factors affect those differences (as in education, outreach, and social security), it should be possible to examine how well various policies would serve to reduce inequities. Through this kind of systems analysis, policy makers could derive a package of policies with the best chance of closing the gaps in cancer outcomes among various groups.
The ultimate success of this approach will depend mainly on two factors: the quality of the modeling and simulations and how closely policy makers adhere to the indicated plans. It is difficult at this point to predict just how well a simulation of the cancer control system will be able to forecast the behavior of the real system. The tool and its constituent models would be far more ambitious than any simulation that has yet been built for cancer control. But what seems clear is that even a less than perfect simulation should lead people to think more deeply and clearly about how the different components of the cancer control system interact and should give valuable insights into the system’s behavior and how to modify it. That in itself could make the effort to develop the planning
and monitoring tool worthwhile, and ultimately, with enough design improvements and testing, it should be feasible to simulate the cancer control system that represents and predicts its behavior with reasonable accuracy.
As noted earlier, this report does not include lists of customized actions that stakeholders can take instantly to improve cancer control—for example, that agency X should be doing more of this or less of that, to what extent, when, and for how long. This is a direct consequence of the committee charge as well as the report’s findings that the current approaches to cancer control are collectively not performing to their best and should be replaced with a systems-oriented approach. Near- or short-term recommendations would simply be more of the same—actions intended to improve one aspect of the overall system without a clear understanding of how those actions would play out in the context of the entire cancer control system.
Indeed, from the committee’s point of view, offering such short-term recommendations could actually be counterproductive because it would buttress today’s common belief that the appropriate way to improve cancer control is to seek to improve the individual components of the system in isolation—and would thus undercut the main message of this report.
Given this situation, then, what should the various cancer control actors be doing until an overarching approach can be developed that addresses cancer control with systems engineering? The stakeholders can begin shaping their actions with an eye toward how those actions fit within the broader cancer control system, with emphasis on the core principles laid out in recommendation A. To illustrate the sorts of things that this might entail, consider the following suggestions.
Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC), as a leader in disease control and prevention, has sponsored a variety of cancer-related programs with a wide range of objectives and is one of the major governmental agencies in U.S. efforts to control cancer. It supports research on a number of cancer-related topics, including studies on cancer incidence and mortality, examinations of the effectiveness of various cancer control efforts, and studies of public knowledge and attitudes about different types of cancer. Its National Program of Cancer Registries supports the collection of data by state cancer registries across the United States and takes part in publishing those data. It sponsors a number of relevant programs such
as the National Comprehensive Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, the National Program of Cancer Registries, and the Colorectal Cancer Control Program.2 Its National Institute for Occupational Safety and Health conducts research and makes recommendations on workplace exposures to cancer-causing chemicals. And its Office on Smoking and Health carries out a number of activities intended to reduce smoking-related disease, particularly lung cancer. These activities include programs that seek to keep young people from starting smoking, the promotion of smoke-free environments, programs that help people who smoke to quit, and actions designed to reduce smoking-related health disparities among various groups.
There are a number of changes or additions that CDC could make to this suite of programs in anticipation of a future in which a more systems-oriented approach is taken to cancer control. For example, the agency could develop rigorous ways to compare the effectiveness of its different programs across different contexts. It would still be necessary to make judgments about the composite value of various outcomes—as in tobacco cessation and prevention interventions—and how those outcomes affect a larger, interconnected system of cancer control. This could involve joint analyses of efforts between CDC and its sister agencies within HHS. Such studies of the interactions among various segments of the cancer control system could provide insights and knowledge that would be valuable in developing an accurate model of the entire system.
Among the many CDC programs, perhaps the closest in spirit to the vision described in this report is its National Comprehensive Cancer Control Program (NCCCP), established in 1998. It funds and provides guidance and technical assistance to states, territories, and other entities for developing their individual comprehensive cancer control plans. NCCCP emphasizes a multi-pronged approach to cancer control, with a focus on primary prevention, early detection and treatment, and supporting cancer survivors and caregivers, and it supports these focus areas through what it terms “cross-cutting priorities.” These priorities include supporting changes in policies, systems, and environments to make communities healthier;3 achieving health equity; and using evaluations to assess and demonstrate outcomes, and these priorities can be multi-pronged in nature as well. The priority of building healthy communities, for example, emphasizes the development of policies to protect people from harmful exposures (such as to secondhand smoke), the creation of systems that influence people to make healthier choices (such as eating better or getting screened for cancer), and changes in the local environment to
2 This text has been revised since prepublication release.
3 This text has been revised since prepublication release.
encourage individuals to be more active (such as adding bike lanes or walking paths).
These plans explicitly recognize the importance of addressing cancer control on multiple fronts at once, but in general they do not take the next step and approach cancer control as a complex adaptive system. Instead, the plans typically take an isolated, one-item-at-a-time approach: to accomplish A, do B; to accomplish C, do D; and so on. In particular, they do not take into account the way different components of the cancer control system can interact and affect one another. Furthermore, while the plans may set priorities, there is generally no way to objectively compare the performance of different combinations of strategies in order to zero in on an overall strategy that will be most effective.
Because of the plans’ explicit acknowledgment of the importance of a comprehensive approach to cancer control, NCCCP would be an excellent program to enhance through a systems engineering approach to cancer control while a national plan is being developed with numerous participants. CDC could, for example, test a prototype of the interactive planning and monitoring tool described in recommendation C by making it available to the states and other entities for use in developing their comprehensive plans. Such a tool could be less complex and less layered because it may not include various options at the national level, such as federal funding for cancer research or national policies that affect medical care, drug prices or advanced technologies. Still, even this simplified version of the planning and monitoring tool would make it possible to get feedback from dozens of different organizations concerning what worked well—feedback that could be used in the development of the national tool.
Biomedical and Clinical Research
The National Cancer Institute (NCI) has been responsible for a large percentage of cancer research funding in the United States. The basic research supported by NCI, in particular, has motivated much of the progress in treating cancer over the past several decades. The basic cancer biology program is complemented by a population sciences program that studies cancer incidence and progression using epidemiology, genetics, and behavioral and social sciences to understand and predict risk and also to improve the quality of life for cancer survivors. Insights from this population research have been applied in studies that seek to find the most effective cancer prevention methods. Yet another line of research is focused on the clinical diagnosis and treatment of cancer, with a major goal being the development, improvement, and comparison of therapeutic interventions to improve patient outcomes.
In addition to these major areas of research, which are the responsibility of a half dozen NCI divisions, the institute has a number of centers focused on specific topics. The goal of the Center for Cancer Genomics, for instance, is to unify the various cancer genomics research activities that take place across NCI, while the Center to Reduce Cancer Health Disparities seeks to find ways to reduce inequities in cancer incidence, treatment, and outcomes. The Center for Research Strategy takes a higher-level view of NCI research, looking for research gaps and opportunities. The Center for Strategic Scientific Initiatives, which is focused on cutting-edge approaches and technologies, explores new scientific discoveries and emerging technologies with the goal of developing novel preventive agents, diagnostics, and therapies.
Given the broad range of research that takes place under the auspices of NCI, the agency has a tremendous opportunity to synthesize the knowledge and insights that will be necessary for the systems approach to cancer control envisioned in this report. For example, the interactive planning and monitoring tool described in recommendation C will be effective only to the degree that it is possible to predict the outcomes of various possible strategies with some reliability—and, in particular, to have some information about how the outcomes of different strategies compare. Thus, one valuable service that NCI can provide would be to also carry out rigorous comparisons of effectiveness across interventions, looking at the outcomes of different approaches in varying circumstances—including conducting financial analyses of research dollars spent on prevention strategies versus treatment, for instance, or of research funding for developing novel pharmaceuticals versus improved techniques for early detection and establishing robust reproducibility standards for research supported or conducted by NCI as well as different units of NIH involved in cancer research. One goal of the proposed tool is to allow policy makers to compare the likely outcomes of different strategies, but the tool will be only as good as the data informing it.
A second opportunity for NCI would be to move further beyond the usual specialties and deliberately advance research that examines intersectional issues. How, for example, do new developments in cancer control affect the behavior of clinicians or of patients? It is well known, for instance, that improvements in auto safety led to an increase in risky driving, as drivers believed the safer cars allowed them to take more chances. Could something similar happen in the cancer field? Would improved treatment of melanoma lead some individuals to be more willing to risk significant sun exposure, or would an effective treatment for lung cancer lead to an increase in the number of smokers? There are many ways in which the different components of the cancer control system interact with and affect one another, and these could be valuable subjects for study.
Advocacy and Outreach
Among the numerous nonprofit organizations involved in advocacy and outreach for cancer control, some of them, such as the American Cancer Society, are generalists and concern themselves with all aspects of cancer control, from basic research to helping cancer survivors, but most are specialized in one way or another. Most types of cancer—lung cancer, breast cancer, ovarian cancer, prostate cancer, colon cancer, leukemia and lymphoma, and so on—have at least one nonprofit devoted to them, and different aspects of cancer control, such as survivorship care, are also represented. Most of these nonprofits advocate with policy makers for their particular, sometimes narrow, interests. Many of them support research in hopes of improving prevention or detection or treatment, while others are devoted to helping cancer patients and their families in various ways.
Similarly, there are professional organizations devoted to practically every aspect of cancer control, with a focus on individual types of cancer, different types of treatments, or different phases in the cancer control continuum. Many organizations have been created to represent professionals working on different aspects of cancer control, including physicians, nurses, social workers, and patient navigators as well as informal caregivers. While these organizations clearly portray the immense variety of common and potentially competing interests, they also offer opportunities to connect directly with the many different professionals who populate the cancer control network.
Individually, each of these organizations touches on only a small portion of the entire cancer control system, but collectively they cover most, if not all, of it. Thus, one way these organizations could help move cancer control forward toward the future strategic vision of this report would be to make stronger connections among themselves and help the system become more integrated. The first step would be simply to encourage a greater awareness of the entire cancer control system and its nature, with individual components interacting to achieve the overarching goals, and the necessity for a planning and monitoring tool to organize and integrate the planning efforts necessary for national cancer control. Then organizations could develop connections among themselves that followed the lines of mutual interests or approaches. This could have immediate payoffs—if, say, two or more organizations pooled their resources to accomplish ends that were important to all of them—but the more important return will be found in the long term, as these interconnections help build a much more integrated cancer control system in which a systems approach is much more likely to be effective.
Today’s cancer control system is populated by highly trained and dedicated professionals. They have developed exactly the sorts of capabilities and competencies that have been asked of them and then put those skills to work in the system as they found it. As discussed, however, the current system has more than a few inefficiencies and weaknesses that could amplify the burden on society. A complex adaptive systems approach to cancer control will require a new set of capabilities and competencies not only in the analysts and policy makers who concern themselves with the performance of the entire system but also in many of those working to prevent, detect, and treat, cancers, and caring for survivors as well as those approaching death.
At the present time, most of those in the various cancer control communities—from oncologists to biomedical researchers in laboratories across universities and companies, and from public health practitioners to those involved in palliative care and end-of-life care—are focused mainly on their own specialties. They may communicate and cooperate with those in other areas when necessary, but most of the time, that is not the case. That is the state of the current system.
Moving toward a more systemic and systematic approach to cancer control will require understanding and performing one’s job in a much broader context. It will require communication with a much broader range of participants than is common now, for instance, and also the ability to understand and appreciate the goals and concerns of those working in other areas. It will require a degree of awareness of the state and performance of the overall system and a sense of one’s place within that system. This sort of systems awareness has been fruitfully achieved in various other systems, from the National Airspace System to just-in-time automobile manufacturing system, although none is as large and diverse as the cancer control system. Part of building that systems awareness will be developing the capabilities and competencies—with corresponding implications for education, research practices, and professional incentives—necessary to engage with and guide a complex adaptive system.
More than anything, what will be required will be the development of a systems mind-set, which involves seeing the world and one’s position in it in terms of the systems one is working in. Not everyone may embrace this broad mind-set in practice, but it will be required of decision makers, and it will be helpful to most participants so that they can understand how they fit into the big picture. People with this mind-set see themselves as part of a large effort with many parts, much like air traffic
controllers in the National Airspace System, for example. They know how to do their jobs—directing planes in their airspace—but they also have an understanding of how their work can affect others in different parts of the system—and how others or the weather can affect them.
The development of this mind-set and the requisite competencies and capabilities will not happen overnight. Two key steps will advance this process. The first is the development and dissemination of the cancer control planning and monitoring tool. Those who learn about how the tool is used—and, ideally, get the chance to work with the tool themselves, at least to a limited degree—will naturally begin to think of the nation’s cancer control efforts as all part of one large, sprawling, loosely connected system. The second step will be in bringing together those from various specialties and divisions of cancer control—and, importantly, beyond—to develop shared implementation plans, which hopefully would be in line with the overall direction decided on based on the tool’s projections. This sort of communication and collaboration is a precondition to developing any shared responsibility or strategy for the entire cancer control system.
For patients, the fragmentation of today’s system is perhaps its most negative feature. Divided practices force patients to play a major role in the coordination of their own care, making sure that the proper information is communicated from one part of the system to another, and they are the ones who bear the consequences when communication between the different components of the system breaks down (for instance, a situation that leaves a patient’s oncologist uninformed about a condition of which the patient’s primary clinician is well aware). Thus, to many patients, the main sign that improvements in the cancer control system have occurred might be better integration of the system, with the separate pieces working together seamlessly. The current or envisioned system of cancer control may never be able to be fully integrated; however, it might be enough for it to be coordinated well enough that the patient is never aware of the gaps between the pieces.
For policy makers focused on cancer care, the success of the system will be most defined by how well various goals are met, such as lowering cancer incidence and death rates, improving certain health status indicators after a cancer diagnosis, and reducing costs while maintaining quality. For others, policies pertaining to the environment, housing, tax, social security, defense, and veterans could provide adjacent insights for cancer control. These kinds of composite understandings in turn will depend on the accuracy of the model’s forecasts, so success will also require a model
that reliably and accurately simulates the main aspects of the cancer control system and predicts the outcomes of various policy measures.
Success will also depend on how well this systems approach engages, rather than alienates, the frontline participants in cancer control in carrying out the simulation-informed plan. It is worth noting that the modeling could actually forecast how well various changes would be accepted by participants, particularly using established and emerging insights from social and behavioral sciences, and could even simulate different ways of instituting those changes to determine which approaches would likely be most successful.
Over time, though, success will be defined by how well the cancer control system succeeds in achieving two prime qualities: accountability and equity. One of the advantages of the type of planning and monitoring tool that has been discussed here is that it encourages a decision process that is open and accountable. As was the case with the multi-criteria systems analytic approaches described in Chapter 3, a cancer control model and simulation of the sort under discussion would produce rankings of various options according to explicit inclusion and weightings of various factors. There can be disagreement and debate about how the different factors should be weighted, depending on the participants in the discussion—how, for example, should a case of cancer prevented be valued versus a case of cancer cured or brought into remission versus how should a drug be priced for a particular kind of cancer?—but the model itself would make clear exactly what choices are being made. Once those choices have been made, the model identifies the path most likely to produce the best outcome according to the available information and user-provided weights. Regular monitoring of the system with changing data sets will determine whether the real outcomes match the predicted outcomes.
In a way, the use of the tool could encourage greater openness and accountability by the way it is operated. People can debate the choices, but once a decision has been made, the path is determined, and accountability becomes mainly a matter of making sure that the various components of the cancer control system are performing as expected and progress is being made, measured, and reported. If the outcome differs significantly from what was predicted, that would quickly become apparent because of the regular monitoring of the system, and modifications could be made—all done openly and with accountability.
Similarly, the use of a planning and monitoring tool of the type under discussion here offers perhaps our best chance of lessening the degree of inequity in cancer care in the United States. The inequity in the system today is the product of a number of interacting factors—social inequalities, financial inequalities, educational inequalities, behavioral differences,
disparities in medical care, and so forth. In other words, the inequities are a systems issue rather than being the product of one or a few factors that can be addressed independently. Inequities might even be an emergent property of these systemic interactions. Thus, complex systems analyses will be a prerequisite to address disparities in cancer control, where a number of different factors are recognized, analyzed, and addressed simultaneously. There is no way to do this with today’s cancer control system; a complex systems engineering approach guided by a multi-level, multi-criteria model of the cancer control system could be an effective way to make progress.
National cancer control efforts require something unprecedented: a collaborative initiative among multiple participants to develop a joint ability with joint accountability to understand and guide in productive ways a complex adaptive system. The interactive planning and monitoring tool required for this work will demand both the development of new capabilities and the repurposing of existing resources that could be fruitfully integrated into a functional system. Such a system would not only be invaluable in cancer control but could also be useful in many other areas where complex adaptive systems are involved—practically every aspect of population health. The stakes are extremely high. Projections indicate that the number of cancer cases will overwhelm the current health and medical system capacity as early as the next decade. The nation’s cancer control system will need to become much more effective, efficient, and accountable than it is today—indeed, it will require a major transformation to successfully address the approaching wave of cancers. Guiding the cancer control system using the science and engineering of complex adaptive systems offers productive possibilities for progress, including effectively integrating and coordinating the resources and intentions of groups and individuals.