Developing A 21st Century Vision for Health Statistics

Introduction and Overview

A process is underway to help shape the Nation’s health statistics system for the 21st century. The process is identifying forces (such as changing health and health care, information and communications technologies, and public policies) that will need to be tracked, and to which the health statistics system must respond. The process will formulate a vision for the Nation’s health statistics system which is responsive to emergent, urgent, and ongoing data needs.

Key participants in this process include the National Committee on Vital and Health Statistics, the National Center for Health Statistics, the Department of Health and Human Services Data Council, and the National Academy of Sciences’ Committee on National Statistics and Institute of Medicine. Components of the process include commissioned papers, expert discussion groups, an NAS workshop, and consultative process to obtain public and professional feedback through such means as forums at professional association meetings, NCVHS public hearings, visits to States, and feedback solicited on the NCVHS web site.

Overall Goals and Process Objectives

Goal 1: Develop a vision of the health statistics system for the 21st Century. This will:

• reflect all manifestations of health and health care delivery
• encompass population health, transactions between the population and the health care delivery system, and the health care delivery system; and
• address the relationship and potential synergy between public and private health data sets, and national, state, and locally maintained data.

Process Objectives

1A: identify major future trends in health, health care, technology, demographics, and social policy, and statistical methodology that will help determine needed characteristics and components of 21st century health statistics system

1B: document and articulate a clear statement of the role health statistics can play in addressing these major health issues

1C: build a literature that defines the field of health statistics, describes its importance, and documents its unique contributions to health care and health policy making, program development, and research

1D: build consensus on key health statistics system issues and data gaps that need to be addressed in building the 21st century health statistics system

Goal 2: Describe and define the disciplines, components, resources, and other elements that are needed to implement this vision.

Process Objectives

2A: identify the desirable characteristics of the field of health statistics and the health statistics system, and how these characteristics can be operationalized

2B: develop an identity and purpose for the field of health statistics, and an easy way to explain this to others

2C: place the field of health statistics within the context of related fields, such as public health surveillance, health services research, epidemiology, and biomedical research

Goal 3: Set forth a clear set of criteria and a process for evaluating the health statistics system and its individual components, now and in the 21st Century.

Process Objectives

3A: develop a set criteria for evaluating the extent to which the health statistics system achieves the vision described above, now and in the 21st century

3B: establish an ongoing process of communication between users and producers of health statistics to provide feedback on needs and uses, to aid learning by health statistics producers and users, and to help assure that health statistics are used to their maximum advantage for policy making, program development, and research

3C: connect users and producers, and broaden the base of those that are involved in and care about health statistics

3D: institute channels and mechanisms for ongoing advisory input on the 21st century health statistics system, including its purposes, priorities, characteristics, and components

3E: establish ongoing mechanisms for addressing the relationship and potential synergy between public and private health data sets, and national, state, and locally maintained data, including approaches to standards, common conventions, etc.

Vision Process

Commissioned papers

Objective: To build a body of literature that identifies key issues in building the 21st century health statistics system, with case examples and international comparisons

Papers in process:

Selected National Health Data Systems: A Background Paper for Planning the Future of Health Statistics in the United States, by Jennifer Zelmer et al, Canadian Institute for Health Information. This paper will provide a comparative overview of how different countries organize their health statistics systems. The focus will be on a sample of major industrialized countries other than the United States, including Canada, Australia, and the United Kingdom. The paper will identify common models, trends, and future directions in the evolution of the vision for and management of national health statistics in these countries.

From National Health Statistics to Health Information Systems: A Model for the 21st Century, by Charlyn Black et al, University of Manitoba.. This paper will discuss key assumptions and critical components of a health information system; outline the importance of being able to make links across key areas and to examine various types and levels of investment in medical care for different populations; describe the Manitoba experience with developing, implementing and expanding the POPULIS System, and discuss possibilities of developing these types of health information systems in the future.

Health Statistics Needs for Children, by Lorraine Klerman, University of Alabama at Birmingham. This paper will review the history of the State-Children’s Health Insurance Program (S-CHIP) to determine what role health statistics data played in indicating a need for S-CHIP and the development of its provisions; describe the health statistics data that policy makers at the state and federal levels believe will be essential to demonstrate the impact of S-CHIP; and explore the need for additional health statistics data about the health status of children and the services that children use, as perceived by leaders in the field.

Numbers We Need: Health Statistics and Health Policy, by Richard Kronick, University of California at San Diego. This paper will focus on the health statistics data needed for improving health policy, emphasizing: the financing and delivery of care to the uninsured, the extent to which public policy should encourage the growth of managed care, and mental health parity. This paper will also address two core questions: are the numbers we need for public policy best created by one or more ad hoc research efforts, or best created as part of an ongoing monitoring system?; and if we face a tradeoff of obtaining nationally representative numbers or obtaining numbers that more intensively track outcomes in a small number of communities, which approach is preferable?

Characteristics of a Robust and Useful Health Statistics System, by Daniel Melnick, Consultant. This paper will identify several subsystems of the national health statistics system that are generally regarded by their users as having responded successfully to diverse and changing data needs, such as the mortality statistics system and the National Health Interview Survey. The properties of those successful systems will be analyzed, and a general model for successful systems will be derived. System properties hypothesized to contribute to success include accuracy, timeliness, responsiveness to health policy concerns, and accessibility to potential users.

Paper to be developed:

Meta-Analysis of Previous Reviews and Recommendations for Health Statistics (working title)

Discussion Groups on Future Directions

Objectives

• provide broad perspectives to authors of commissioned papers
• provide opportunity for brainstorming on future trends in health, health care, technology, demographics, social policy, and statistical methodology and their impact on needed characteristics and components of the 21st century health statistics system
• begin discussion of desirable characteristics and components of the 21st century health statistics system, overall goals, and so forth
• serve as springboard for discussions at the workshop on A Health Statistics System for the 21st Century, and for moving toward a consensus on the above

Two discussion groups of 9-15 persons (largely from States, local areas, academia, and the private and non-profit sector) have been convened, the first on March 9, 1999 and the second on May 10, 1999. In addition, discussion groups will be convened consisting of NCHS staff, and representatives of CDC Centers, Institutes, and Offices and other HHS agencies. Questions for group discussions included:

• What will be key issues in the health care system in 2005 and 2010?
• What will be the information needs for the key issues in the health care system in 2005 and 2010, and how can the 21st century health statistics system respond to those information needs to support policy making and program development?
• What will be key technological and methodological considerations for the health statistics system in 2005 and 2010?
• What broad parameters define and describe the role of health statistics as a field?

Working Sessions on Definition of and Criteria for Health Statistics

Objectives

• begin focused dialogue on the definitions of the field of health statistics, it purposes, its roles, and its boundaries, building on discussion groups on future directions
• begin focused dialogue on criteria for evaluating the current status of health statistics and the health statistics system, and progress towards implementing the 21st century health statistics system
• help refine and shape discussions for the workshop on A Health Statistics System for the 21st Century

The working session was convened March 29-30, consisting experts experts in health statistics, public health surveillance, and health services research.

Questions addressed at the working sessions included:

• What are health statistics?
• What are the unique contributions of the field of health statistics?
• Does health statistics exist as a field in its own right?
• What are the boundaries of health statistics, and how is the field of health statistics distinguished from health services research, public health surveillance, epidemiology, health information, and health informatics?
• How do health statistics fit into the spectrum of research, knowledge development, policy making, and program development?
• Is the field of health statistics defined by its products, purposes, data, or approaches?
• What are the important roles of health statistics, such as evaluating programs, monitoring programs, supporting policy making and program development, and documenting population health status and health care?

Workshop on a Health Statistics System for the 21st Century (November 1999)

Objectives: Move towards consensus on

• What will be the 21st century health statistics data needs from the perspectives of federal, state, and local policy makers; federal, state, and local health statistics data producers and users; health services researchers; biomedical researchers; health care organizations and providers; privacy advocates; and health informatics and other technology experts?
• How can the 21st century health statistics system meet future data needs relating to health status and determinants of health, organization and financing of health services, and changes in the policy and technology environment?
• How can DHHS and its agencies respond to 21st century health statistics data needs?
• What opportunities exist for improving health statistics resources through harmonization of public and private health statistics, and collaboration among federal, state, and local levels?
• What should be the priorities for DHHS and its agencies in building the 21st century health statistics system?
• How do we define the field of health statistics (moving beyond brainstorming of discussion groups, and possibly guided by more focused discussions of the working sessions)?
• How can a 21st century vision of health statistics can build upon past successes and models, both in the United States and in other countries?

Consultative Process to Obtain Broad Input on Developing the 21st Century Vision for Health Statistics.

Objectives

• assure that the overall vision process benefits from the widest range of perspectives, with particular focus on health statistics practitioners and users in public and private sectors, and at federal, state, and local levels
• assure that the overall vision process is as open and inclusive as possible
• assure that key constituents and organizations are aware of and provide advice on developing the vision
• maximize consensus and support in the broader community for the end results of the process

Approaches:

• NCVHS public hearings
• Presentations, open sessions, or other forums at professional association meetings such as a “Town Hall Meeting” at the annual meeting of the National Association for Public Health Statistics and Information Systems (NAPHSIS) in June 1999, and the Joint Virtual State Center and Assessment Initiative meeting to be held in September 1999.
• Discussions and focused efforts within Federal agencies
• Discussion sessions at meetings of other key constituents, such as the, the Association for Health Services Research (AHSR), the National Association of Health Data Organizations (NAHDO), and the Council of State and Territorial Epidemiologists (CSTE).
• Site visits to individual States
• Feedback obtained by making documents available for comment via the internet
• Additional workshops, discussion groups, or other forums for further discussion

Key Milestones

First Discussion Group: March 9, 1999

Working Session: March 29-30, 1999

Second Discussion Group: May 10, 1999

Commissioned paper drafts

completed: August and September, 1999

NAS Workshop: November 4-5, 1999

Commissioned papers completed:December 17, 1999

NCVHS Hearing(s): Winter/Spring 1999

Presentations at professional

associations and states:Ongoing 1999-2000

NAPHSIS Annual MeetingJune 7, 1999

AHSR Annual MeetingJune 27-29, 1999

National Conference on

Health Statistics August 2-4, 1999

Staffing and Support

NCVHS Work Group on Health Statistics for the 21st Century

Daniel J. Friedman, Ph.D., Chair, 617-624-5613

Paul Newacheck, Dr.P.H.

Barbara Starfield, M.D., M.P.H.

David T. Takeuchi, Ph.D.

Gerry E. Hendershot, Ph.D., Lead Staff for Work Group, 301-436-7085

National Center for Health Statistics, CDC:

Ed Sondik, Director,301-436-7016

Lisa Broitman, Program Analyst, 301-436-7142

Marjorie Greenberg, Chief, Data Policy and Standards Staff, 301-436-4253

Ed Hunter, Associate Director for Planning, Budget, and Legislation, 301-436-7142

Rob Weinzimer, Chief, Data Dissemination Branch, DDS, 301-436-6154

National Academy of Sciences, Committee on National Statistics

Jane Durch, Workshop Lead, 202-334-2788

DHHS Data Council

Jim Scanlon, Executive Secretary, 202-690-7100

Attachment

3/9/99 and 5/10/99 Discussion Group Participantsin Developing the 21st Century Vision for Health Statistics

Ross Arnett, AHCPR

Lisa Broitman, National Center for Health Statistics

Kathy Coltin, NCVHS and Harvard Pilgrim Health Care

Don Detmer, NCVHS and Univ. of Virginia

Jane Durch, National Academy of Sciences

Stan Edinger, AHCPR

Robert Epstein, Merck-Medco Managed Care, Inc.

Judy Feder, Institute for Health Care Research and Policy

William Friedewald, Metropolitan Life Insurance Company

Dan Friedman, NCVHS and Massachusetts Department of Public Health

Marsha Gold, Mathmatica Policy Research

Marjorie Greenberg, National Center for Health Statistics

Ed Hunter, National Center for Health Statistics

Larry Kessler, FDA

Nancy Krieger, Harvard School of Public Health

Laura Meckler, AP Wire Service

Dan Melnick, Dan Melnick Research Incorporated

Paul Newacheck, Institute for Health Policy Studies

Len Nichols, Urban Institute

Ellen O’Connor, Washington Business Group on Health

John Oswald, Minnesota Center For Health Statistics

Jonathan Peck, Institute for Alternative Futures

Dorothy Rice, University of California

Linda Rosenstock, NIOSH

Jim Scanlon, ASPE

Ed Sondik, National Center for Health Statistics

Barbara Starfield, NCVHS and JHU School of Public Health

Miron Straf, National Academy of Sciences

SteveThacker, EPO

Thomas Thom, NHLBI

Kathy Wallman, OMB

Michael Wolfson, Statistics Canada

Don Young, American Association of Health Plans

Jennifer Zelmer, Canadian Institute for Health Information

Participant List for March 29 - 30 Working Session towards Developing the 21st Century Vision for Health Statistics

Ross Arnett, AHCPR

Lisa Broitman, National Center for Health Statistics

Floyd Fowler, University of Massachusetts at Boston

Dan Friedman, NCVHS and Massachusetts Department of Public Health

Marjorie Greenberg, National Center for Health Statistics

Ed Hunter, National Center for Health Statistics

Lynn Jenkins, NIOSH

Denise Koo, EPO

Garland Land, Missouri State Department of Health

Dan Melnick, Research, Inc.

Janet Norwood

Gib Parrish, EPO

Mike Shwartz, Boston University School of Management

Ed Sondik, National Center for Health Statistics

Ed Spar, Council of Professional Associations on Federal Statistics

Barbara Starfield, NCVHS and JHU School of Public Health

Miron Straf, National Research Council

Jim Scanlon, ASPE

George Van Amburg