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C Private-Sector Initiatives to Advance Health Care Quality and the Development of Quality Measures This appendix reviews a number of private-sector initiatives to advance health care quality and the development of quality measures, catalyzed by the Institute of Medicine’s (IOM) seminal series of reports on quality of care. THE IOM QUALITY SERIES The first wave of the quality movement was shaped by a number of forces—pressure to control health care spending, a demand for greater ac- countability in health care, urgent calls for improved patient safety, and an overall push for better national health outcomes. In 1990, the IOM pro- vided what has become an enduring and widely used definition of quality of care: “Quality of care is the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.” In the years that followed, a series of landmark reports, legislation, and innovations shaped the field of quality improvement. Two such re- ports, To Err Is Human: Building a Safer Health System (IOM, 1999) and Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001), described serious quality gaps in health care and envisioned a new health system to bridge the quality chasm, respectively. They built on experience with quality measurement and quality improvement in other in- dustries, such as transportation safety, and embraced the classical Donabe- dian framework (Donabedian, 1988) of structure, process, and outcomes. The reports laid out six specific aims for health care quality improvement: 245

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246 CHILD AND ADOLESCENT HEALTH safety, timeliness, effectiveness, efficiency, equity, and patient-centeredness. Crossing the Quality Chasm emphasized the shift in health care from acute to chronic care, noting that “chronic conditions are now the leading cause of illness, disability, and death; they affect almost half the population and account for the majority of health care expenditures” (IOM, 2001). A later series of IOM reports (IOM, 2006a, 2006b, 2006c) proposed a rigorous, systematic, and quantifiable approach for using the above six aims to promote quality measurement in the health care system. These studies offered strategies for evaluating the performance of managed care organizations, health plans or programs, and hospitals, as well as individual practitioners, and made suggestions for how these measures could be used to induce changes in practice through financial rewards or penalties. Some progress has been made—primarily in the area of patient safety among adults (Leape and Berwick, 2005)—but nearly a decade later, significant gaps in quality persist. Several IOM reports have reviewed an array of public- and private-sector initiatives aimed at improving health care quality (IOM, 2006a, 2006b, 2006c). These studies have focused primarily on the quality of adult health care. They reflect a bias toward the need for quality measures that can help improve the management of complex, chronic conditions, as well as health care services that are commonly associated with hospitalization or require intensive procedures or interactions with multiple health care providers. The initial IOM health care quality framework was augmented by a later approach that called attention to adapting quality measures to a patient-centered focus, emphasizing the stages of an individual’s health status: preventive services (“staying healthy”), acute treatment (“getting better”), chronic conditions (“living with illness”), and end-of-life care. DEVELOPMENT OF INITIAL QUALITY MEASURES FOR CHILDREN AND ADOLESCENTS Concern about the quality of care, particularly chronic care, gave rise to efforts to assess the effectiveness of care for the chronically ill. The National Quality Forum (NQF) is a private-sector standards-setting orga- nization whose efforts center on the evaluation and endorsement of stan- dardized performance measures. Since its establishment in 1999, NQF has endorsed more than 500 measures covering all aspects of care (i.e., ambula- tory, hospital and facility, and palliative care). However, measures relevant to or developed specifically for children and adolescents failed to receive early attention. This was the result of NQF’s initial focus on high-need and high-cost conditions (largely in response to its private health plan funders’ priorities). This approach inevitably created a focus on adults, since this population has the highest prevalence of chronic conditions.

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247 APPENDIX C NQF held its first meeting specifically on measures for children in 2004. This gathering led to the identification of several priority areas in which measures existed, but few measures were endorsed since no consensus regarding their validity and reliability and the feasibility of their use had been established (Simpson et al., 2007). After the 2004 meeting, it would be several years before NQF would once again be able to focus specifically on children and adolescents. Despite these limitations, NQF has endorsed numerous quality measures either specifically for or inclusive of children and adolescents. In addition, at least some of the measures aimed at adults might be relevant to children, adolescents, or young adults with some modi- fication (Simpson and Fairbrother, 2010). In 2009, the Department of Health and Human Services expanded the scope of the contract with NQF to include a focus on Medicaid and the State Children’s Health Insurance Program (SCHIP), thus supporting NQF’s efforts to enhance the number and scope of endorsed measures relevant to children and adolescents and to better incorporate the needs of young people into the ongoing priorities. EXPANSION OF MEASURE DEVELOPMENT AND QUALITY IMPROVEMENT In the mid-1990s, the National Committee for Quality Assurance (NCQA) convened a pediatric measurement advisory panel to expand the scope of measures relevant to children in the Healthcare Effectiveness Data and Information Set (HEDIS©), which at the time was quite limited (Forrest et al., 1997). In addition, the Child and Adolescent Health Measurement Initiative (CAHMI) was launched at the Foundation for Accountability (FAcct) to bring a focus on consumer-driven measures as a key component of quality measurement. Together, these two organizations developed a set of priorities for measure development that helped shape the next decade’s work on quality measurement. At the same time, the National Initiative for Children’s Healthcare Quality (NICHQ) was established in 1999 to com- plement measure development with quality improvement activities. And the 1999 reauthorization of the Agency for Healthcare Research and Quality (AHRQ) included children as one of the named priority populations. The ensuing years saw slow but steady progress in the number of measures available for assessing the quality of care for children (Beal et al., 2004; Dougherty and Simpson, 2004; Kavanagh et al., 2009; Miller et al., 2005; Schwalenstocker et al., 2008). For example, the Joint Commission on Accreditation of Healthcare Organizations worked with the Pediatric Data Quality System Collaborative Measure Workgroup (Pedi-QS) to de- velop indicators for reviewing the delivery of inpatient asthma care and care provided in the pediatric intensive care unit (Scanlon et al., 2007;

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248 CHILD AND ADOLESCENT HEALTH Schwalenstocker et al., 2008). With funding from the Centers for Medicare and Medicaid Services (CMS), the RAND Corporation developed a set of more than 400 outpatient indicators for children and adolescents and used them to assess the quality of care in landmark studies on quality of care for adults (McGlynn et al., 2003) and for children and adolescents (Mangione- Smith et al., 2007). Yet issues related to the feasibility and cost of large- scale abstraction from medical records inhibit the use of these indicators. At a 2010 conference convened by NICHQ and NQF to promote alignment with national priorities and child health measures, stakeholders identified key drivers, or essential levers, that together are necessary and sufficient to achieve progress toward quality improvement goals: payment reform, public reporting, professional development, performance measure- ment, research and knowledge dissemination, and system capacity (Homer et al., 2010). Stakeholders believed that, in addition to the presence of appropriate measures, these drivers were likely to be powerful levers for change in child and adolescent health. Numerous privately funded entities are engaged in developing measures for assessing the quality of health care for children and adolescents (NCQA, RAND, NICHQ, CAHMI, the American Medical Association-Physician Practice Management Company [AMA-PPMC], the Joint Commission). Although a process exists for reviewing and endorsing measures (NQF), disconnects persist between the availability of such measures and their use. First the Children’s Health Insurance Program Reauthorization Act (CHIPRA), then the Affordable Care Act (ACA), changed the landscape. A mandate and an urgency now exist, especially around measures focused on accountability and value in service delivery. More attention needs to be given to medical records data as a source for quality measurement. For ex- ample, many HEDIS measures (implemented by State Medicaid and CHIP programs) are hybrid measures that require both administrative claims data and data from medical records abstraction to score. Moreover, the clinical detail found in medical records is especially important in developing pre- vention measures (e.g., content of well-child visits). However, the primary focus of this study (based on the committee’s scope of work, as described in Chapter 1) was to consider the major national population-based report- ing systems sponsored by the federal government. Thus, the committee acknowledges the value of medical records abstraction and recognizes the current constraints in making medical records data more widely available for quality measurement purposes without making specific recommenda- tions on the future use of these data.

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249 APPENDIX C REFERENCES Beal, A., J. Co, D. Dougherty, T. Jorsling, J. Kam, J. Perrin, and H. Palmer. 2004. Quality measures for children’s health care. Pediatrics 113(1):199-209. Donabedian, A. 1988. The quality of care: How can it be assessed? Journal of the American Medical Association 260(12):1743-1748. Dougherty, D., and L. A. Simpson. 2004. Measuring the quality of children’s health care: A prerequisite to action. Pediatrics 113(1):185-198. Forrest, C. B., L. Simpson, and C. Clancy. 1997. Child health services research: Challenges and opportunities. Journal of the American Medical Association 277(22):1787-1793. Homer, C., L. Simpson, K. Adams, K. Streb, A. Charrow, and W. Vernon. 2010. Promoting alignment: National Priorities and Child Health Measures Conference 2010. IOM (Institute of Medicine). 1999. To err is human: Building a safer health system. Washing- ton, DC: National Academy Press. IOM. 2001. Crossing the quality chasm: A new health system for the 21st century. Washing- ton, DC: National Academy Press. IOM. 2006a. Medicare’s Quality Improvement Organization Program: Maximizing potential. In Pathways to quality health care, edited by the Committee on Redesigning Health Insurance Performance Measures, and Performance Improvement Programs, and Board on Health Care Services. Washington, DC: The National Academies Press. IOM. 2006b. Performance measurement: Accelerating improvement. Washington, DC: The National Academies Press. IOM. 2006c. Rewarding provider performance: Aligning incentives in Medicare. In Pathways to quality health care, edited by Board on Health Care Services. Committee on Redesign- ing Health Insurance Performance Measures, and Performance Improvement Programs. Washington, DC: The National Academies Press. Kavanagh, P. L., W. G. Adams, and C. J. Wang. 2009. Quality indicators and quality assess- ment in child health. Archives of Disease in Childhood 94(6):458-463. Leape, L. L., and D. M. Berwick. 2005. Five years after To Err Is Human: What have we learned? Journal of the American Medical Association 293(19):2384-2390. Mangione-Smith, R., A. H. DeCristofaro, C. M. Setodji, J. Keesey, D. J. Klein, J. L. Adams, M. A. Schuster, and E. A. McGlynn. 2007. The quality of ambulatory care delivered to children in the United States. New England Journal of Medicine 357(15):1515-1523. McGlynn, E. A., S. M. Asch, J. Adams, J. Keesey, J. Hicks, A. DeCristofaro, and E. A. Kerr. 2003. The quality of health care delivered to adults in the United States. New England Journal of Medicine 348(26):2635-2645. Miller, M. R., P. Gergen, M. Honour, and C. Zhan. 2005. Burden of illness for children and where we stand in measuring the quality of this health care. Ambulatory Pediatrics 5(5):268-278. Scanlon, M. C., K. P. Mistry, and H. E. Jeffries. 2007. Determining pediatric intensive care unit quality indicators for measuring pediatric intensive care unit safety. Pediatric Critical Care Medicine 8(Suppl. 2):S3-S10. Schwalenstocker, E., H. Bisarya, S. T. Lawless, L. Simpson, C. Throop, and D. Payne. 2008. Closing the gap in children’s quality measures: A collaborative model. Journal for Health- care Quality 30(5):4-11. Simpson, L., and G. Fairbrother. 2010. Quality measurement and children: Where have we been? Where do we need to go? (Prepared as a background paper for NQF/NICHQ meeting, January 2010). Simpson, L., D. Dougherty, D. Krause, C. M. Ku, and J. M. Perrin. 2007. Measuring children’s health care quality. American Journal of Medical Quality 22(2):80-84.

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