In the United States, approximately 14 million people have had cancer 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. Care often is not patient-centered, many patients do not receive palliative care to 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 medicine--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 providing 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 percent increase in the number of people developing cancer. The current care delivery system is poorly prepared to address the care needs of this population, which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support.

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis presents a conceptual framework for improving the quality of cancer care. This study proposes improvements to six interconnected components of care: (1) engaged patients; (2) an adequately staffed, trained, and coordinated workforce; (3) evidence-based care; (4) learning health care information technology (IT); (5) translation of evidence into clinical practice, quality measurement and performance improvement; and (6) accessible and affordable care. This report recommends changes across the board in these areas to improve the quality of care.

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis provides information for cancer care teams, patients and their families, researchers, quality metrics developers, and payers, as well as HHS, other federal agencies, and industry to reevaluate their current roles and responsibilities in cancer care and work together to develop a higher quality care delivery system. By working toward this shared goal, the cancer care community can improve the quality of life and outcomes for people facing a cancer diagnosis.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON IMPROVING THE QUALITY OF CANCER CARE: ADDRESING THE CHALLENGES OF AN AGING POPULATION
• Reviewers
• Acknowledgments
• Preface
• Acronyms
• Summary
  • CONCEPTUAL FRAMEWORK
  • RECOMMENDATIONS
  • CONCLUSIONS
• 1. Introduction
  • CHANGES IN CANCER CARE SINCE 1999
  • COMMITTEE CHARGE
  • SCOPE OF THE REPORT
  • DEFINING HIGH-QUALITY CARE
  • CONCEPTUAL FRAMEWORK
  • METHODS OF THE STUDY
  • ORGANIZATION OF THE REPORT
  • REFERENCES
• 2. The Current Cancer Care Landscape: An Imperative for Change
  • CANCER DEMOGRAPHICS
  • CHALLENGES AND OPPORTUNITIES IN CANCER CARE
  • KEY STAKEHOLDERS
  • REFERENCES
  • ANNEX 2-1 RELEVANT PROVISIONS OF THE AFFORDABLE CARE ACT
• 3. Patient-Centered Communication and Shared Decision Making
  • DEFINING PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING
  • THE IMPORTANCE OF PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING IN CANCER
  • CHALLENGES TO PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING IN CANCER
  • IMPROVING PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING IN CANCER
  • IMPROVING PATIENT-CENTERED COMMUNICATION AND SHARED DECISION MAKING AT THE END OF LIFE
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
• 4. The Workforce Caring for Patients with Cancer
  • DEFINING THE WORKFORCE CARING FOR PATIENTS WITH CANCER
  • ENSURING THE QUANTITY AND QUALITY OF THE WORKFORCE
  • CAREGIVERS
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
  • ANNEX 4-1 PROFESIONALS INVOLVED IN CANCER CARE
• 5. The Evidence Base for High-Quality Cancer Care
  • HOW THE EVIDENCE BASE FOR CANCER CARE DECISIONS IS GENERATED
  • IMPROVING THE BREADTH OF INFORMATION COLLECTED
  • IMPROVING THE DEPTH OF INFORMATION COLLECTED
  • IMPROVING THE USE OF INFORMATION TECHNOLOGY
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
• 6. A Learning Health Care Information Technology System for Cancer
  • THE VISION
  • CHALLENGES
  • PATH TO IMPLEMENTATION
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
• 7. Translating Evidence into Practice, Measuring Quality, and Improving Performance
  • CANCER QUALITY METRICS
  • CLINICAL PRACTICE GUIDELINES
  • PERFORMANCE IMPROVEMENT INITIATIVES
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
• 8. Accessible and Affordable Cancer Care
  • ACCESSIBLE CANCER CARE
  • AFFORDABLE CANCER CARE
  • SUMMARY AND RECOMMENDATIONS
  • REFERENCES
  • ANNEX 8-1 EXAMPLES OF ONGOING ACTIVITIES DESIGNED TO IMPROVE ACCESS TO CARE FOR VULNERABLE AND UNDERSERVED POPULATIONS
• APPENDIXES
  • Appendix A Glossary
  • Appendix B Committee Member and Staff Biographies

This study was supported by Contract Nos. HHSN261200900003C and 200-2011-38807, TO #13 between the National Academy of Sciences and the National Cancer Institute and the Centers for Disease Control and Prevention respectively. This study was also supported by AARP; the American Cancer Society; the American College of Surgeons, Commission on Cancer; the American Society for Radiation Oncology; the American Society of Clinical Oncology; the American Society of Hematology; the California HealthCare Foundation; LIVESTRONG; the National Coalition for Cancer Survivorship; the Oncology Nursing Society; and Susan G. Komen for the Cure. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

Suggested citation:

IOM (Institute of Medicine). 2013. Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.