APPENDIX B

Workshop Agenda and Participants

ENHANCING DATA SYSTEMS TO IMPROVE THE QUALITY OF CANCER CARE

The National Academies

Cecil and Ida Green Building, Room 130

2001 Wisconsin Avenue, N.W.

Washington, D.C.

AGENDA

Monday, October 4

8:00 a.m.–8:30 a.m.

Continental Breakfast

8:30 a.m.–8:45 a.m.

Welcome and Introduction

Joseph Simone

SESSION ONE: OVERVIEW

Evidence-based measures are available to assess cancer care quality, but data systems are not yet in place to give practitioners information on their performance relative to national or regional norms. This presentation will review well-established quality measures, the need for population-based data and monitoring systems, and outstanding health services research questions that remain to be answered with quality-related data.

8:45 a.m.–9:15 a.m.

What Do We Want? Tools for Quality Monitoring and Health Services Research

Tom Smith

SESSION TWO: USING CANCER REGISTRIES TO MONITOR THE QUALITY OF HEALTH CARE

Population-based cancer registries are the foundation of surveillance and cancer control programs. Presentations on how cancer registry data have been



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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care APPENDIX B Workshop Agenda and Participants ENHANCING DATA SYSTEMS TO IMPROVE THE QUALITY OF CANCER CARE The National Academies Cecil and Ida Green Building, Room 130 2001 Wisconsin Avenue, N.W. Washington, D.C. AGENDA Monday, October 4 8:00 a.m.–8:30 a.m. Continental Breakfast 8:30 a.m.–8:45 a.m. Welcome and Introduction Joseph Simone SESSION ONE: OVERVIEW Evidence-based measures are available to assess cancer care quality, but data systems are not yet in place to give practitioners information on their performance relative to national or regional norms. This presentation will review well-established quality measures, the need for population-based data and monitoring systems, and outstanding health services research questions that remain to be answered with quality-related data. 8:45 a.m.–9:15 a.m. What Do We Want? Tools for Quality Monitoring and Health Services Research Tom Smith SESSION TWO: USING CANCER REGISTRIES TO MONITOR THE QUALITY OF HEALTH CARE Population-based cancer registries are the foundation of surveillance and cancer control programs. Presentations on how cancer registry data have been

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care and potentially might be applied to quality assessment will be followed by a status report on the Centers for Disease Control and Prevention 's National Program of Cancer Registries, the federal effort to bolster the states' cancer surveillance infrastructure. Next, National Cancer Institute staff will describe how the Surveillance, Epidemiology, and End Results (SEER) program has been used to answer important health services research questions. Brief presentations describing of some of the technical, methodological, and legal issues raised in using registry data to monitor healthcare quality will be followed by a discussion that will focus on the merits and limitations of wider applications of quality assessment using cancer registries. 9:15 a.m.–10:00 a.m. Using State Registry Data to Monitor Healthcare Quality Registry-Based Quality Assessments: A Review Bruce Hillner The potential for registry-based quality assessments John Ayanian 10:00 a.m.–10:30 a.m. The Status of State Registries Dan Miller 10:30 a.m.–11:00 a.m. Using SEER to Answer Quality-Related Health Services Research Questions Joan Warren Arnold Potosky 11:00 a.m.–11:15 a.m. Coffee Break 11:15 a.m.–12:30 p.m. Issues Related to Using Registry Data to Monitor Quality of Care The Intersection of Cancer Surveillance and Quality Assessment Linda Harlan Joseph Lipscomb Data Elements Needed for Quality Assessment Jay Piccirillo Privacy Issues James Hodge 12:30 p.m.–1:30 p.m. Lunch Break 1:30 p.m.–2:30 p.m. Discussion: How Can Registry Data be Used to Monitor Quality? Tom Tucker

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care SESSION THREE: CANCER CARE DATA AND ACCOUNTABILITY Information about clinical practice can serve as a powerful tool to change physician and patient behavior and to improve the quality of care. Hospital-reported data have been used to assess patterns of care and to monitor compliance to practice guidelines. The National Cancer Data Base (NCDB), maintained by the American College of Surgeons and American Cancer Society holds promise for assessing progress toward quality improvement because it includes information on the care experience of nearly 60 percent of individuals diagnosed with cancer. The National Comprehensive Cancer Network (NCCN) is an effort on the part of large cancer centers to collect quality data and incorporate them into an ongoing quality improvement program. Presenters will review the status of these quality initiatives and discuss resources needed to assure complete coverage of individuals, their treatments, and outcomes. The discussion will focus on the strengths and weakness of these programs, the feasibility of setting national or regional quality benchmarks, and the resources needed to ensure acceptance and quality improvement at the local level. 2:30 p.m.–3:30 p.m. Using Hospital-Based Data to Monitor Physicians and Hospitals The National Cancer Data Base Monica Morrow The National Comprehensive Cancer Network Jane Weeks 3:30 p.m.–4:00 p.m. Discussion: Implementing Successful Internal Quality Monitoring J. Gale Katterhagen 4:00 p.m.–4:15 p.m. Coffee break Six in 10 new cases of cancer occur among the elderly. Consequently, the Health Care Financing Administration (HCFA) in administering the Medicare Program has many opportunities to improve the quality of cancer care. The State-based Peer Review Organizations, for example, have conducted a number of assessments of cancer care quality. 4:15 p.m.–5:00 p.m. HCFA's Use of Cancer Care Quality Data Stephen Jencks Various professional organizations are involved in accreditation programs to enhance the quality of care. Individuals involved in three such programs will describe them and their inclusion of cancer care measures.

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care 5:00 p.m.–5:30 p.m. Accreditation Programs Health Plans: National Committee for Quality Assurance Roger Winn Physicians: American Medical Association Jeffrey Crane Hospitals: Joint Commission on Accreditation of Healthcare Organizations and American College of Surgeons' Commission on Cancer Monica Morrow Tuesday, October 5 8:00 a.m.–8:30 a.m. Continental Breakfast 8:30 a.m.–9:00 a.m. Summary of Day One Vivien Chen Tom Smith SESSION FOUR: DATA FOR HEALTH SERVICES RESEARCH 9:00 a.m.–10:00 a.m. The National Center for Health Statistics, the Agency for Health Care Policy and Research, and the American Cancer Society are among the sponsors of large population-based surveys, providing a wealth of opportunities for health service researchers. Presenters will provide brief overviews of research using these resources and will discuss their strengths and weaknesses for cancer research. Next, the purpose, scope, and methods of two large cancer survivorship surveys being launched by the American Cancer Society will be described. Lastly, we will hear about NCI's HMO Cancer Research Network, an effort to facilitate collaborative research among managed care organizations. The discussion will focus on resource needs for health services research. National Center for Health Statistics, National Hospital Discharge Survey Phyllis Wingo Agency for Health Care Policy and Research, Healthcare Cost and Utilization Project David Morris American Cancer Society, Cancer Survivorship Surveys Frank Baker

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care National Cancer Institute, HMO Cancer Research Network Martin Brown 10:00 a.m.–10:30 a.m. Discussion: Resource Needs for Health Services Research Tom Smith SESSION FIVE: CANCER CARE DATA NEEDS 10:30 a.m.–12:30 p.m. Discussion with NCPB Joseph Simone How can we better use what we already have? How can we improve available systems to expand quality monitoring efforts and improve the timeliness of analyses? What new data initiatives are needed (e.g., linkages, special studies, new collection systems)? What organizational, technical, and financial resources are needed? PARTICIPANTS John Ayanian, M.D., M.P.P. Assistant Professor Harvard Medical School Departments of Medicine and Health Care Policy Frank Baker, Ph.D. Vice President for Behavioral Research American Cancer Society Rachel Ballard-Barbash, M.D., M.P.H. Chief, Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Martin Brown, Ph.D. Chief, Health Services and Economics Branch Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Jeffrey Crane, M.D. Staff physician Raleigh Hematology Oncology Clinic Linda Harlan, Ph.D. Epidemiologist Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Bruce Hillner, M.D. Professor of Medicine Medical College of Virginia Virginia Commonwealth University James G. Hodge, Jr., J.D., LL.M. Greenwall Fellow Georgetown University Law Center Stephen F. Jencks, M.D., M.P.H. Senior Clinical Advisor Health Standards and Quality Bureau Health Care Financing Administration J. Gale Katterhagen, M.D. Medical Director for the Cancer Program and Breast Center Mills-Peninsula Health Services Medical Director for Quality Sutter Health Joe Lipscomb, Ph.D. Chief, Outcomes Research Branch Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Daniel Miller, M.D., M.P.H. Chief, Cancer Surveillance Branch National Center for Chronic Disease Prevention and Health Promotion Division of Cancer Prevention and Control Centers for Disease Control and Prevention David Morris, M.D. Clinical Instructor Department of Radiation Oncology University of North Carolina Monica Morrow, M.D. Professor of Surgery Northwestern University Medical School Jay F. Piccirillo, M.D., F.A.C.S. Associate Professor and Director Clinical Outcomes Research Office Department of Otolaryngology-Head and Neck Surgery Washington University School of Medicine Arnold Potosky, Ph.D. Operations Research Analyst Health Services and Economics Branch Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Tom Smith, M.D., F.A.C.P. Associate Professor of Medicine and Health Administration Medical College of Virginia Virginia Commonwealth University Tom Tucker, M.P.H. Associate Professor Department of Health Services College of Allied Health Professions and Department of Preventive Medicine and Environmental Health College of Medicine University of Kentucky Jane Weeks, M.D., M.Sc. Associate Professor of Medicine Harvard Medical School Associate Professor Health Policy and Management Harvard School of Public Health

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Enhancing DATA SYSTEMS to Improve the Quality of CANCER Care Joan Warren, Ph.D. Epidemiologist Health Services and Economics Branch Applied Research Program Division of Cancer Control and Population Sciences National Cancer Institute Phyllis Wingo, Ph.D., M.S. Director of Surveillance Department of Epidemiology and Surveillance American Cancer Society Roger Winn M.D. Chief, Section of Community Oncology Department of Internal Medical Specialties Division of Medicine U.T.M.D. Anderson Cancer Center

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