1
Introduction

Shortly after the tobacco industry’s Master Settlement Agreement with the 50 states in 1998, leading members of Georgia’s government, medical community, and public-spirited citizenry began considering ways in which some of Georgia’s almost $5 billion, 25-year-settlement could be used to benefit the people of the state. Their decision, most fitting given the role of tobacco in cancer, was to create an entity and program whose mission is to make Georgia a national leader in cancer prevention, treatment, and research (GCC, 2001, 2003). This new entity—called the Georgia Cancer Coalition, Inc. (GCC)—and the state of Georgia subsequently began implementing a far-reaching state cancer initiative that includes five strategic goals: (1) preventing cancer and detecting existing cancers earlier; (2) improving access to quality care for all state residents with cancer; (3) saving more lives in the future; (4) training future cancer researchers and caregivers; and (5) turning the eradication of cancer into economic growth for Georgia (GCC, 2001).

GCC contracted with the Institute of Medicine (IOM) for advice on a key component of the cancer initiative’s developing information infrastructure and reporting system—a set of measures that could be used to gauge the state’s progress in improving the quality of its cancer-related services and in reducing cancer-related morbidity and mortality (Toal, 2003). The measure set would be pertinent to the mission and goals of GCC (as they related to the continuum of cancer care), in a form that is reasonable to implement, and drawn from established clinical guidelines or quality measures already in use. Further, current availability of the data necessary to develop the measures was not a principal concern as GCC intended to



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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia 1 Introduction Shortly after the tobacco industry’s Master Settlement Agreement with the 50 states in 1998, leading members of Georgia’s government, medical community, and public-spirited citizenry began considering ways in which some of Georgia’s almost $5 billion, 25-year-settlement could be used to benefit the people of the state. Their decision, most fitting given the role of tobacco in cancer, was to create an entity and program whose mission is to make Georgia a national leader in cancer prevention, treatment, and research (GCC, 2001, 2003). This new entity—called the Georgia Cancer Coalition, Inc. (GCC)—and the state of Georgia subsequently began implementing a far-reaching state cancer initiative that includes five strategic goals: (1) preventing cancer and detecting existing cancers earlier; (2) improving access to quality care for all state residents with cancer; (3) saving more lives in the future; (4) training future cancer researchers and caregivers; and (5) turning the eradication of cancer into economic growth for Georgia (GCC, 2001). GCC contracted with the Institute of Medicine (IOM) for advice on a key component of the cancer initiative’s developing information infrastructure and reporting system—a set of measures that could be used to gauge the state’s progress in improving the quality of its cancer-related services and in reducing cancer-related morbidity and mortality (Toal, 2003). The measure set would be pertinent to the mission and goals of GCC (as they related to the continuum of cancer care), in a form that is reasonable to implement, and drawn from established clinical guidelines or quality measures already in use. Further, current availability of the data necessary to develop the measures was not a principal concern as GCC intended to

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia simultaneously invest in creating a state-of-the-art information infrastructure. IOM was asked, however, to recommend likely sources of data and performance benchmarks. IOM’s Committee on Assessing Improvements in Cancer Care in Georgia was established in the fall of 2003 and was specifically charged with developing a set of quality-of-cancer care measures that, if implemented, could do the following: measure GCC’s impact on cancer prevention, early detection, diagnosis, treatment, and palliative and end-of-life care as well as trends in cancer morbidity and mortality; provide insight into and help resolve economic, geographic, racial, and ethnic disparities in cancer care; inform Georgia’s governor, state legislature, and executive branch of GCC’s progress; contribute to quality improvement initiatives and health education related to cancer; and educate the health care community and the general public about cancer and cancer care. IOM staff and the committee chair conducted a 2-day site visit to Georgia in advance of committee deliberations. The staff and committee chair interviewed a wide array of individuals representing key cancer-related organizations from around the state, including the GCC, Robert W. Woodruff Foundation, GCC regional planning grantees, Georgia Medical Care Foundation, Georgia chapter of the American College of Surgeons, Georgia Society of Clinical Oncology, state Division of Public Health, Emory University Health Sciences Center, Rollins School of Public Health, Morehouse School of Medicine, and the American Cancer Society.1 CONTEXT FOR THIS REPORT In developing a set of quality-of-cancer-care measures for Georgia, IOM’s Committee on Assessing Improvements in Cancer Care in Georgia assumed that GCC will continue to build a comprehensive statewide program with the potential to bring high-quality cancer care to every citizen in the state. GCC’s initiative will feature prevention, early detection, prompt diagnosis, effective treatment according to the state of the art, and appropriate follow-up care. Moreover, GCC will build a statewide data system that can support ongoing monitoring and assessment of its progress, the 1   See the Acknowledgements for a list of individuals.

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia state of cancer care for all cancer patients in Georgia, and continuous quality improvement statewide. IOM’s Work on Quality of Health Care IOM has had a long interest in quality of health care (IOM, 1990a,b). Notably, in 1994, the IOM Council issued a white paper, America’s Health in Transition: Protecting and Improving Quality (IOM, 1994). This was the start of a special initiative on quality of health care, the formation of IOM’s National Roundtable on Health Care Quality. The National Roundtable on Health Care Quality began a focused effort on quality in 1995-1996 that was encouraged by a subsequent statement from the National Academies (National Academy of Sciences, National Academy of Engineering, and Institute of Medicine) Preparing for the 21st Century: Focusing on Quality in a Changing Health Care System (NAS, NAE, IOM, 1997) and resulted in the release of Statement on Quality of Care (IOM, 1998) and Measuring the Quality of Health Care (IOM, 1999b). A series of IOM committee reports related to health care quality followed—on medical errors and safety (To Err Is Human: Building a Safer Health System) (IOM, 2000b); on designing a health system to improve quality (Crossing the Quality Chasm: A New Health System for the 21st Century) (IOM, 2001a); on health quality reporting (Envisioning the National Health Care Quality Report) (IOM, 2001b); on government roles (Leadership by Example: Coordinating Government Roles in Improving Health Care Quality) (IOM, 2002); on identifying priorities (Priority Areas for National Action: Transforming Health Care Quality) (IOM, 2003c); and on describing some of the priorities (Health Literacy: A Prescription to End Confusion) (IOM, 2004), among others. These IOM reports contributed to the development of principles and a conceptual framework for assessing health care quality that will be reviewed in detail in Chapter 2, Concepts, Methods, and Data Sources. Coincident with IOM’s thorough exploration of quality of health care in general, IOM’s National Cancer Policy Board embarked on an examination of quality of care in the United States specific to cancer. The resulting 1999 report, Ensuring Quality Cancer Care (IOM, 1999a), concluded “that for many Americans with cancer, there is a wide gulf between what could be construed as the ideal and the reality of their experience with cancer care.” The report also identified quality problems in specific services for cancer patients, such as palliative care, cancer prevention and early detection, and survivorship and led to subsequent follow-up reports on these subjects—Improving Palliative Care for Cancer; Childhood Cancer Survivorship: Improving Care and Quality of Life; Fulfilling the Potential of

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Cancer Prevention and Early Detection (IOM, 2001c, 2003a,b), among others. IOM’s National Cancer Policy Board also looked into what data were collected to track cancer and identify problems at the state and national levels, and what data and data systems would be useful to improve the understanding of cancer at the population level. This report, Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000a), identified the need for the development of measures of quality cancer care that could be collected and made a part of existing or future cancer data systems to monitor cancer care and identify problems. This body of work at IOM and its boards and committees of national experts, and in particular, the specific investigations of quality-of-cancer-care evaluation, data systems, and relationships to stages of care, have provided IOM—and in particular, the National Cancer Policy Board and its Committee on Assessing Improvements in Cancer Care in Georgia—with the requisite experience and expertise to evaluate the plans and programs of GCC and the state of cancer care and reporting in Georgia. Relying on this background, IOM is in a position to suggest improvements in data, quality measures to be employed, and implementation of monitoring within the context of general principles of quality of care analysis and a conceptual framework for assessing quality. Principles and Framework for Assessing Quality IOM’s efforts to comprehensively define, measure, and design ways to improve quality of care have been built on important early work by others (Donabedian, 1980)—and, in turn, have influenced other more recent efforts that build on IOM’s contributions. In its 1997 final report, the President’s Commission on Consumer Protection and Quality in the Health Care Industry made recommendations that ultimately resulted in the federal Agency for Healthcare Research and Quality’s annual National Health Care Quality Report. The commission’s recommendations also led to the establishment of the National Quality Forum (NQF), a not-for-profit membership organization created to develop and implement a national strategy for health care quality measurement and reporting. Following the 1997 recommendations of the President’s Commission on Consumer Protection and Quality, a planning committee was formed to design the NQF. That committee recommended a Strategic Framework Board to set the strategy and the principles and priorities for national quality measurement and reporting. Many members of that board were members of IOM’s National Roundtable on Health Care Quality (which also included the first president of the NQF) or had been involved in one or another of the IOM series of quality reports (including prominently IOM’s

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Crossing the Quality Chasm report) and were therefore intimately familiar with IOM’s work. The purpose statement recommended to the NQF, which was adopted with some modifications in November 2001 by the NQF, therefore drew on IOM work and, in particular, linked two of the purpose statement’s elements to the six aims from IOM’s Crossing the Quality Chasm report (IOM, 2001a). As these events were unfolding, IOM’s National Cancer Policy Board was publishing its reports on the quality of cancer care (IOM, 1999a) and on the data systems needed to inform and support quality cancer care (IOM, 2000a) and delivering these reports to the National Cancer Institute. These IOM reports encouraged the National Cancer Institute to take a leadership role in a newly formed U.S. Department of Health and Human Services Quality of Cancer Care Committee, which coordinated the activities of multiple agencies within the department toward the purpose of monitoring and promoting improvements in cancer care quality. The report on data systems also recommended that the Department of Health and Human Services designate a committee to “identify a single set of core quality measures that span the full spectrum of an individual’s care and are based on the best available evidence.” Shortly thereafter, the National Cancer Institute opened discussions with the NQF with the objective of funding the development of this core set. A steering committee to advise the NQF on how to proceed was formed, and this committee included two members of the National Cancer Policy Board and two members of the committee for this report. On the basis of the steering committee’s deliberations, some initial decisions were made, and a contract to fund development of the core indicators was signed in May 2004. Meanwhile, the National Cancer Institute contracted for a set of papers from RAND Health for the purpose of informing the effort to develop quality-of-cancer-care measures, and these were also helpful for this report (McGlynn and Malin, 2002; McGlynn, 2002). The overlapping membership of the steering committee and the committee for this report allowed the NQF and IOM to stay informed of each other’s activities and progress in a coordinated way. This background will be discussed more fully in Chapter 2, Concepts, Methods, and Data Sources, insofar as it is relevant to the conceptual framework and method for this report. ORGANIZATION OF THIS REPORT Chapter 2, Concepts, Methods, and Data Sources, describes how the measures were identified and supported by evidence. It also briefly reviews potential sources of data and benchmarks for measuring the quality of cancer care. (Appendixes A and B provide additional details on potential data sources and benchmarks.)

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia Chapter 3, Preventing Cancer, begins a series of four chapters that present recommended quality measures organized by the stage in the continuum of cancer care for the four major sites of adult cancer—breast, colorectal, lung, and prostate—which comprise over half the cancer cases and deaths in Georgia. The four chapters include detailed one-page summaries of the measures containing a description of the measure, the originator or source of the measure, an explanation of the underlying evidence, an explanation of the gap between the evidence and current practice, the method for calculating the measure, potential sources of data and benchmarks, and key references in the literature. Following Chapter 3, Chapter 4 (Detecting Cancer Early) covers measures of cancer early detection; Chapter 5 (Diagnosing Cancer), measures of cancer diagnosis; and Chapter 6 (Treating Cancer), measures of cancer treatment, including palliative and end-of-life care. Chapter 7, Crosscutting Issues in Assessing the Quality of Cancer Care, addresses two questions: first, how to capture cancer patients’ experience in assessing the quality of care; and, second, how to evaluate and address disparities in cancer care. In the concluding chapter, Chapter 8, Looking Ahead to the Implementation of Quality-of-Cancer-Care Measures, the IOM committee offers GCC advice on implementing the quality-of-cancer-care measures recommended in this report. REFERENCES Donabedian A. 1980. The definition of quality and approaches to its assessment. In: Explorations in Quality Assessment and Monitoring, Vol. I. Ann Arbor, MI: Health Administration Press. GCC (Georgia Cancer Coalition). 2001. Strategic Plan. Atlanta, GA: GCC. ——. 2003. Georgia Cancer Coalition Mobilizing Georgia, Immobilizing Cancer. Atlanta, GA: GCC. IOM (Institute of Medicine). 1990a. Medicare: A Strategy for Quality Assurance, Volume II: Sources and Methods. Lohr KN, Editor. Washington, DC: National Academy Press. ——. 1990b. Medicare: A Strategy for Quality Assurance, Volume I. Lohr KN, Editor. Washington, DC: National Academy Press. ——. 1994. America’s Health in Transition: Protecting and Improving Quality. Washington, DC: National Academy Press. ——. 1998. Statement on Quality of Care. National Roundtable on Health Care Quality, Washington, DC: National Academy Press. ——. 1999a. Ensuring Quality Cancer Care. Hewitt M, Simone JV, Editors. Washington, DC: National Academy Press. ——. 1999b. Measuring the Quality of Health Care. Donaldson MS, Editor. Washington, DC: National Academy Press. ——. 2000a. Enhancing Data Systems to Improve the Quality of Cancer Care. Hewitt M, Simone JV, Editors. Washington, DC: National Academy Press. ——. 2000b. To Err Is Human: Building a Safer Health System. Kohn LT, Corrigan JM, Donaldson MS, Editors. Washington, DC: National Academy Press.

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Assessing the Quality of Cancer Care: An Approach to Measurement in Georgia ——. 2001a. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press. ——. 2001b. Envisioning the National Health Care Quality Report. Hurtado MP, Swift EK, Corrigan JM, Editors. Washington, DC: National Academy Press. ——. 2001c. Improving Palliative Care for Cancer. Foley KM, Gelband H, Editors. Washington, DC: National Academy Press. ——. 2002. Leadership By Example: Coordinating Government Roles in Improving Health Care Quality. Corrigan JM, Eden J, Smith BM, Editors. Washington, DC: National Academy Press. ——. 2003a. Childhood Cancer Survivorship: Improving Care and Quality of Life. Hewitt M, Weiner SL, Simone JV, Editors. Washington, DC: The National Academies Press. ——. 2003b. Fulfilling the Potential of Cancer Prevention and Early Detection. Curry S, Byers T, Hewitt M, Editors. Washington, DC: The National Academies Press. ——. 2003c. Priority Areas for National Action: Transforming Health Care Quality. Adams K, Corrigan JM, Editors. Washington, DC: The National Academies Press. ——. 2004. Health Literacy: A Prescription to End Confusion. Nielsen-Bohlman L, Panzer AM, Kindig DA, Editors. Washington, DC: The National Academies Press. McGlynn EA (RAND). 2002. Applying the Strategic Framework Board’s Model to Selecting National Goals and Core Measures for Stimulating Improved Quality for Cancer Care (Background Paper #1). Bethesda, MD: National Cancer Institute. McGlynn EA, Malin J (RAND). 2002. Selecting National Goals and Core Measures of Cancer Care Quality (Background Paper #2). Bethesda, MD: National Cancer Institute. NAS, NAE, IOM (National Academy of Sciences, National Academy of Engineering, and Institute of Medicine). 1997. Preparing for the 21st Century: Focusing on Quality in a Changing Health Care System. Washington, DC: National Academy Press. Toal RB. August 20, 2003. Letter to Roger Herdman, Director, National Cancer Policy Board.