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1 REPORT BRIEF SEPTEMBER 2013 For more information visit www.iom.edu/qualitycancercare Delivering High-Quality Cancer Care Charting a New Course for a System in Crisis In the United States, approximately 14 million people have had can - cer and more than 1.6 million new cases are diagnosed each year. However, more than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, the barriers to achieving excellent care for all cancer patients remain daunting. Therefore, in 2012, the IOM convened a committee - of experts to examine the quality of cancer care in the United States and for mulate recommendations for improvement. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis presents the committee’s findings and recommendations. Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from A System in Crisis treatment, and decisions about The committee concludes that the cancer care delivery system is in crisis. Care care often are not based on the often is not patient-centered, many patients do not receive palliative care to latest scientific evidence. manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence. The cost of cancer care also is rising faster than many sectors of medi - cine—having increased to $125 billion in 2010 from $72 billion in 2004—and is projected to reach $173 billion by 2020. Rising costs are making cancer care less affordable for patients and their families and are creating disparities in patients’ access to high-quality cancer care. - There also are growing shortages of health professionals skilled in provid ing cancer care, and the number of adults age 65 and older—the group most - susceptible to cancer—is expected to double by 2030, contributing to a 45 per cent increase in the number of people developing cancer. The current care

2 harms, palliative care, psychosocial support, and delivery system is poorly prepared to address the costs of care. To reach this goal, the committee care needs of this population, which are complex recommends that the federal government work due to altered physiology, functional and cogni - with other stakeholders to improve the develop - tive impairment, multiple coexisting diseases, - ment and dissemination of this critical informa increased side effects from treatment, and greater - tion, using decision aids when possible. And pro need for social support. fessional educational programs should provide - The committee proposes a conceptual frame - cancer care team members with formal, compre work for improving the quality of cancer care hensive training in communication. (see figure). It comprises six interconnected com - Patients with advanced cancer should receive ponents: (1) engaged patients; (2) an adequately end-of-life care consistent with their needs, val - staffed, trained, and coordinated workforce; (3) ues, and preferences. This will require cancer care evidence-based care; (4) learning health care teams to revisit and implement patients’ advance information technology (IT); (5) translation of care plans—which detail the type of care patients - evidence into clinical practice, quality measure would want to receive if they become unable to ment and performance improvement; and (6) speak for themselves—and to place a primary accessible and affordable care. emphasis on palliative care, psychosocial support, and timely referral to hospice for end-of-life care. High-quality cancer care is provided by Engaging Patients, Developing a diverse teams of professionals. The cancer care Coordinated Workforce team, in coordination with primary/geriatrics In a high-quality cancer care delivery system, - teams and specialist care teams, should imple cancer care teams should support all patients in - ment patients’ care plans and deliver compre making informed medical decisions by providing hensive, efficient, and patient-centered care. To patients and their families with understandable promote such teams, federal and state legislative - information at key decision points on such mat and regulatory bodies should eliminate reim - ters as cancer prognosis, treatment benefits and bursement and scope-of-practice barriers to FIGURE: A High-Quality Cancer Care Delivery System 2

3 Cancer care teams helping those with advanced cancer should provide patients with end-of-life care consistent with their needs, values, and preferences. team-based care, and academic institutions and - such as electronic health records and cancer reg professional societies should develop interprofes - istries—already are in place, but these elements often are not implemented or integrated in a way sional education programs to train the workforce in team-based cancer care. - that creates a true learning system. The commit tee recommends that professional organizations - Moreover, it is critical that cancer care deliv ery organizations require members of cancer care and the Department of Health and Human Ser - teams to have the necessary skills to deliver high- vices (HHS) develop the necessary components of a learning health care IT system. quality cancer care, as demonstrated through training, certification, or credentials. Measuring the Quality of Care Evidence-Based Care and Improved In order to continue to advance the high-quality Information Technology cancer care delivery system, measurement and assessment of progress in improving the delivery Clinical research that gathers evidence of the of cancer care, public reporting of information benefits and harms of various treatment options gathered, and development of innovative strate - is an essential part of a high-quality cancer care gies to facilitate performance improvement will system. Patients, in consultation with their care - be needed. To reach this goal, the committee rec - teams, could use this information to make treat ommends the development of a national quality ment decisions that are consistent with their reporting program for cancer care. HHS should needs, values, and preferences. Improving the work with professional societies to create and evidence base will require expanding the breadth - implement a formal long-term strategy for pub - and depth of data collected on cancer interven licly reporting quality measures for cancer care. tions, including more data on older adults and They also should prioritize, fund, and direct the patients with multiple chronic diseases, as well as development of meaningful quality measures for more data on patient-reported outcomes, patient cancer care with a focus on outcome measures, characteristics, and health behaviors. as well as implement the infrastructure for public A learning health care IT system would enable reporting. real-time analysis of data from cancer patients in a variety of care settings to improve knowledge and inform medical decisions. This IT system Accessible and Affordable Care - would collect and analyze data from clinical prac tice, implement changes to improve care, evaluate A high-quality cancer care delivery system should the outcomes of these changes, and generate new - be accessible to all patients, including vulner hypotheses to test and implement. Many of the able and underserved populations. This system elements for a learning health care IT system— 3

4 Committee on Improving the Quality of Cancer Care: should also reward cancer care teams for providing Addressing the Challenges of an Aging Population patient-centered, high-quality care and eliminat - Patricia A. Ganz Mary S. McCabe (Chair) ing wasteful interventions. Distinguished University Director, Survivorship Program, and Lecturer, Division of Professor, University of The committee recommends that HHS develop Medical Ethics, Weill Medical California, Los Angeles Schools of Medicine & Public Health; College, Memorial Sloan- a national strategy that leverages existing commu - and Director, Cancer Prevention Kettering Cancer Center & Control Research, Jonsson Larissa Nekhlyudov nity interventions to provide accessible and afford - Comprehensive Cancer Center Associate Professor, Harvey Jay Cohen Department of Population able cancer care. To accomplish this, HHS should Medicine, Harvard Medical Walter Kempner Professor of School, and Internist, Medicine, and Director, Center support the development of innovative programs, for the Study of Aging and Department of Medicine, Human Development, Duke Harvard Vanguard Medical identify and disseminate effective community University Medical Center Associates interventions, and provide ongoing support to suc - Mary D. Naylor Timothy J. Eberlein Bixby Professor and Chair, Marian S. Ware Professor in - cessful community interventions. In addition, pay Gerontology, and Director, Department of Surgery, Washington University School New Courtland Center for - ers should design and evaluate new payment mod Transitions and Health, of Medicine; Spencer T. and University of Pennsylvania, Ann W. Olin Distinguished els that encourage cancer care teams to provide School of Nursing Professor; and Director, Siteman Cancer Center at care that is based on the best available evidence and Michael N. Neuss Barnes-Jewish Hospital, Chief Medical Officer, and Washington University School - aligns with their patients’ needs, values, and pref Professor, Department of of Medicine Medicine, Vanderbilt-Ingram erences. If evaluations of specific payment models Thomas W. Feeley Cancer Center, Vanderbilt Helen Shafer Fly Distinguished University Medical Center demonstrate increased quality and affordability, Professor of Anesthesiology, Noma L. Roberson Head, Institute for Cancer Care Cancer Research Scientist, - payers should rapidly transition from fee-for-ser Innovation, and Head, Division Roswell Park Cancer Institute of Anesthesiology and Critical (Retired) vice reimbursements to new payment models. Care, The University of Texas Ya-Chen Tina Shih MD Anderson Cancer Center Associate Professor, Section of Betty Ferrell Hospital Medicine, and Director, Professor and Research Program in the Economics Scientist, City of Hope National of Cancer, Department of Medical Center Conclusion Medicine, The University of Chicago James A. Hayman Professor, Department of Changes across the board urgently are needed to George W. Sledge, Jr. Radiation Oncology, University Chief of Oncology, Department of Michigan improve the quality of cancer care. All participants of Medicine, Stanford University Katie B. Horton and stakeholders, including cancer care teams, Research Professor, George Thomas J. Smith Washington University, School Director and Harry J. Duffey patients and their families, researchers, quality of Public Health and Health Family Professor of Palliative Services Medicine and Professor of metrics developers, and payers, as well as HHS, Oncology, Johns Hopkins Arti Hurria Associate Professor, and School of Medicine other federal agencies, and industry, must reevalu - Director, the Cancer and Aging Neil Wenger ate their current roles and responsibilities in cancer Research Program, City of Professor, University of Hope California, Los Angeles School care and work together to develop a higher quality of Medicine cancer care delivery system. By working toward Study Staff this shared goal, the cancer care community can Patrick Burke Laura Levit improve the quality of life and outcomes for people Financial Associate Study Director Sharyl Nass Erin Balogh facing a cancer diagnosis. f Director, National Cancer Associate Program Officer Policy Forum Pamela Lighter Research Assistant Roger Herdman Director, Board on Health Care Michael Park Services Senior Program Assistant Study Sponsors AARP American Cancer Society American College of Surgeons, Commission on Cancer American Society for Radiation Oncology 500 Fifth Street, NW American Society of Clinical Oncology Washington, DC 20001 American Society of Hematology TEL 202.334.2352 California HealthCare Foundation 202.334.1412 FAX Centers for Disease Control and Prevention www.iom.edu LIVESTRONG The Institute of Medicine serves as adviser to the nation to improve health. National Cancer Institute - National Institutes of Health Established in 1970 under the charter of the National Academy of Sciences, National Coalition for Cancer Survivorship the Institute of Medicine provides independent, objective, evidence-based advice Oncology Nursing Society to policy makers, health professionals, the private sector, and the public. Susan G. Komen for the Cure® Copyright 2013 by the National Academy of Sciences. All rights reserved.

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