Foreword and Introduction

Marion Ein Lewin

The Robert Wood Johnson (RWJ) Health Policy Fellowships program, established in 1973, is designed to develop the capacities of outstanding midcareer health professionals in academic and community-based settings to gain an understanding of the health policy process and to assume leadership roles in health policy and management. Each year six Fellows are selected on a competitive basis and leave their academic settings and practice responsibilities to spend a year in the nation's capital. A 3-month orientation program is followed by a 9-month working assignment in a congressional office or in the executive branch. The Fellowships program, which is sponsored by The Robert Wood Johnson Foundation, is directed and administered by the Institute of Medicine of the National Academy of Sciences. At this writing 139 Fellows have gone through the program.

During the life of the program, virtually all the major health care issues that revolve around the triad of access, costs, and quality have come to the forefront of the nation's attention and have been discussed and debated from different policy and political perspectives depending on the year, the party in power, the health care environment, and the social and economic climate. It could be said,



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Foreword and Introduction Marion Ein Lewin The Robert Wood Johnson (RWJ) Health Policy Fellowships program, established in 1973, is designed to develop the capacities of outstanding midcareer health professionals in academic and community-based settings to gain an understanding of the health policy process and to assume leadership roles in health policy and management. Each year six Fellows are selected on a competitive basis and leave their academic settings and practice responsibilities to spend a year in the nation's capital. A 3-month orientation program is followed by a 9-month working assignment in a congressional office or in the executive branch. The Fellowships program, which is sponsored by The Robert Wood Johnson Foundation, is directed and administered by the Institute of Medicine of the National Academy of Sciences. At this writing 139 Fellows have gone through the program. During the life of the program, virtually all the major health care issues that revolve around the triad of access, costs, and quality have come to the forefront of the nation's attention and have been discussed and debated from different policy and political perspectives depending on the year, the party in power, the health care environment, and the social and economic climate. It could be said,

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however, that the years 1992 to 1994, and the battle for passage of national health care reform represented an historical and unique opportunity to observe both the highs and the lows of public policy formulation. No matter what side of the issues one was positioned, the years of the Clinton health plan debate provided invaluable lessons on how things get accomplished or fall apart in a political environment around issues of major change—in this case, national health care reform. For the RWJ Health Policy Fellows, one of the seminal lessons learned from the rise and fall of the Clinton Health Security Act (Clinton HSA) focused on how information is produced, packaged, used, and disseminated to color or position a particular issue and to affect the final outcome—in both positive and negative ways. Although this area may be old hat to Madison Avenue and the media, the use of information by key stakeholders to both shape and shake public perception and opinion was an illuminating if not transforming experience for policymakers and health policy researchers traditionally operating outside the hothouse of the Washington political scene. Symbolized perhaps most startlingly by the now-famous Harry and Louise ads developed by the insurance industry, the 1992 to 1994 policy and political season marked a uniquely rich opportunity to learn about information and information trading as critical drivers in the ultimate success or failure of a legislative initiative. It was with this in mind that a group of RWJ Health Policy Fellows decided that it might be useful to develop a number of case studies focused on major national or state health care initiatives and to look more closely at how information is used and conveyed and to what degree it influences the outcome. The case studies selected and presented in this volume—the adoption of the successful Japanese just-in-time (JIT) manufacturing strategy to information development and trading on Capitol Hill; funding of graduate medical education (GME) as proposed in the Clinton HSA; the campaign for statewide health care reform in Missouri; the development of New York State legislation phasing out the state's hospital rate-setting system with a more market-oriented approach for funding GME and other public goods such as care for the uninsured; the recent congressional debate over reauthorization of the National Institutes of

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Health (NIH); legislative efforts in the 104th U.S. Congress to regulate the use of genetic information, particularly as it pertains to insurance discrimination; and overtures in the Congress to reform Medicare payments to participating health maintenance organization (HMO) risk contractors—mark initiatives and subject areas in which the authors as current or former Fellows had an opportunity to observe firsthand how information is used to affect policy and outcomes. Although each of the papers provides different insights and describes the different valuable lessons that the Fellows learned, certain themes resonate throughout the volume. They include the following: The explosion in recent years in the amount and sources of information around health care issues. The sheer volume of materials that crosses a legislator's or a staffer's desk during a typical work week is overwhelming. At the same time government at all levels is downsizing, with significant reductions in the number of staff responsible for increasingly larger workloads. The result is that staff have less and less time to devote to gaining a full understanding of a policy issue or a legislative initiative. To be effective, information must respond to the needs of increasingly distracted and time-pressed legislators and staff, posing special challenges for educating members on complex and technical issues. Formal testimony at congressional hearings is now, in most cases, limited to 5 minutes. In responding to the new reality, leading think tanks, research groups, and foundations are perfecting the art of producing "one-pagers," clear, concise summaries and findings of larger studies. In an environment of information overflow, lawmakers are prone to rely on trusted consultants, lobbyists, or brokers to help them identify aspects of proposed legislation with which the elected official wants to identify and to package and shape relevant information most supportive of the member's position and politics. Often such a politicized and fragmented focus can confuse or distort, rather than illuminate, the important underlying issue that needs to be addressed.

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As policy formulation at every level has become more budget-driven, for information to be considered useful it must include the costs and budget implications of the policy or program being advanced. The ability to provide timely, reliable, and credible cost estimates related to a particular legislative proposal or position is considered a valuable commodity. There has been a significant compression of time in which action on major issues takes place in Congress, a consequence in part of the increasing politicization of policymaking in Washington (as well as in the states) and the never-ending preoccupation with winning the next election. As one of the writers in this volume suggests, over the past two decades, the restructuring of congressional committees and increasing ease of travel between home districts and the Capitol have erased any earlier clear distinction between campaigning and policymaking activities. Surveys and polls indicate again and again that the voting public has a short attention span when it comes to most policy issues and political debates. Increasingly, leaders of both parties are timing action on major pieces of legislation—particularly legislation in which voters have a high level of interest—closer to the start of election campaigns. Although information is critical, more often than not it is not the decisive element in determining legislation in a political environment. Instead, the importance of timing, leadership, and identifying the right moment for bringing key stakeholders to the table ready ''to deal" are often the make-or-break factors. On Capitol Hill, the use of a dramatic anecdote or packaging of a message around a personal-interest story is a time-tested vehicle for garnering public attention more quickly and memorably than the use of more comprehensive and broadly represented information. It is essential to understand the political, policy, and economic environments in which a particular issue is being raised, debated, and resolved. The democratic process and our system of checks and balances are designed to slow action on proposals of significant change. Even for a combination of a good idea and effective information it may take several years of coalition and public support building before there is a reasonable chance of passing a piece of legislation.

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This country is witnessing a democratization of leadership and decision-making, with important implications for Congress and information trading. As citizens have become increasingly cynical and impatient with government and bureaucracy, grassroots movements and legislation by referendum have become important levers for legislative action around important issues. In Congress the seniority system and all-powerful committee chairs have virtually disappeared. Key information is no longer primarily the purview of an exclusive group of leaders or professionals. Cyberspace and the internet are also contributing in major ways to the democratization of information and information trading. Each of the seven papers in this volume expands upon and illuminates some of the themes listed above. "The Market for Information in Health Policy: Using the 'Just-in-Time' Strategy," by Wendy Young, describes how Congress, operating in an increasingly competitive and partisan environment is adopting the much heralded Japanese just-in-time manufacturing strategy for information development on Capitol Hill. The oversupply of information has exceeded the need for information at any given time and has created a reliance on JIT strategies to sort and retrieve only the information needed at the moment. Policymakers use the JIT approach to gain a competitive edge to influence policy proposals and political agendas. The paper offers interesting perspectives on how policymaking in Congress is acquiring more marketing characteristics and how individual members have identified their own fleet of consultants to advise them on media, strategy, polling, and direct mail, in many cases replacing the political party organization's traditional role. The author expresses concern that the popularity of JIT information sources may be reinforcing the shift toward privatization and downsizing, with the potential for eroding the federal capacity for conducting effective and objective evaluations of its policies. Oliver Fein's paper, "Funding Graduate Medical Education in the Year of Health Care Reform: A Case Study of a Health Issue on Capitol Hill," traces the evolution of the 1994 GME debate in the U.S. Senate. The paper provides an informative, hands-on glimpse of health policy formulation around high-stakes issues such as pro-

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posals to establish physician workforce policies, reduce the overall number of residency training positions, redirect GME dollars from teaching hospitals to other training sites, and reduce the large variations in GME payments across institutions and regions. The paper contends that whereas the control and targeting of key information by the Clinton administration and valuable data provided by expert panels and commissions represented major forces in shaping the legislation, when it came to final action or inaction, they paled in significance to the power and influence of well-armed and sophisticated interest groups. Dr. Fein points out that although health care reform and, with it, the GME provisions, failed to pass the Senate, the issue has remained vibrant and Congress benefited from a rich learning experience. According to the author, then majority leader Senator George Mitchell told his staff that if health reform did not pass in 1994, one consequence would be that Congress would be armed with how to make future cuts in Medicare and Medicaid. Medicare GME funding continues to be on the cutting table in the 105th Congress and may in the end fare less well than in that historical period when health care reform was addressed. Robert Frank and Coleen Kivlahan provide a thorough assessment of a state health reform initiative in their paper, "The Use of Information and Misinformation in a State Health Reform Initiative." In Missouri as well as in most other states, the legislative process and the systems supporting the development of legislation differ from those in the U.S. Congress. State legislative sessions tend to be very short compared to those of the U.S. Congress, and part-time legislators frequently combine their roles as legislators with many other activities. Part-time legislators rarely have the time or ability to develop expertise in an area unless it is related to their occupation. According to the authors, health care reform proposals are frequently hampered, among other things, by the lack of available state-specific data, a deficiency often exploited by powerful interest groups interested in maintaining the status quo. The authors attest that national data and trends may not be adequate evidence to force major change at the state level. In addition, the complexity of health

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care reform as it was proposed in Missouri as well as by the White House, severely limited the ability to engage a wide audience in the debate. The rise and fall of Missouri's ShowMe Health Reform Initiative provides interesting lessons and cautions for states attempting to push a comprehensive health care reform agenda in too short a time. When legislators serve on a part-time basis and have limited knowledge of the issues under debate, the intricacies of comprehensive legislation provide many opportunities for the dissemination of misinformation that soon ends up controlling the legislative debate. The authors point out that states that have succeeded in comprehensive reform efforts have spent years educating legislators and policymakers and building constituencies. Benjamin Chu's paper "The Role of Graduate Medical Education Consortia in the Postregulatory Era in New York State," provides an interesting and timely history of how New York State's Health Care Reform Act of 1996 was developed and passed. The demise of national health care reform and a new political and policy environment provided a unique window of opportunity for major change agents in New York State to challenge the usefulness of such bedrock issues as the state's highly regulated hospital rate-setting program and traditional funding of GME in a more competitive, market-oriented health care marketplace. Pitched but constructive battles and backroom trading finally resulted in the Health Care Reform Act of 1996, described by the author as "a grand set of compromises that preserved a good deal of the current system while charting new waters." Passage of the Health Care Reform Act of 1996 in New York State showed that significant reform around an issue where most of the major politically powerful stakeholders had a preponderant financial stake in maintaining the status quo is difficult but achievable. In the end, however, the inertia against change was overcome not so much by data and good information but by the revolution sweeping the organization and financing of health care across the country. According to the author, although information was necessary for change, two major forces represented the keys to final success: the ascendancy of a newly elected state leadership which ran on a compelling reform agenda, and the realities of the new

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health care environment. In the final analysis, information helped to frame the debate, but political and financial realities created the environment that forced key stakeholders to take stock of their new positions and come prepared to compromise. In "Information Trading, Politics, and Funding for the National Institutes of Health in the 104th Congress," David Stevens offers a highly informative glimpse into the political process that drives biomedical research in an era of limited budgets. In the new environment even an icon of the American health care system like NIH will have to demonstrate value-added performance. The politics of biomedical research funding are now sharply focused on a debate between the merits of earmarked research funding versus those of investigator-initiated funding. Budget constraints and the dramatic expansion of knowledge in basic biomedical science will in the future create a heightened struggle between powerful research factions competing for limited dollars. The paper suggests that traditionally favored and protected constituencies on Capitol Hill can no longer assume that past largesse will continue into the future. Many of the stakeholders in the biomedical and clinical research communities are already developing ways to develop information and positions more reflective of the changed political and budget environments. Pearl O'Rourke's paper, "Gene Mapping and Genetic Testing, Promises and Problems: A Case Study on an Emerging Technology," provides a compelling case study on the panoply of information challenges related to educating decision-makers and the public on a complex and technical issue. Gene mapping and genetic testing have become front-burner issues since passage of the -For-Kennedy Health Insurance Reform Bill (S. 1028) in 1996. The legislation, which provides for portability of insurance coverage, also prohibits exclusion from coverage on the basis of preexisting conditions. The bill specifically prohibits exclusion from coverage on the basis of genetic testing. Lobbying activities related to the Kassebaum-Kennedy legislation provided ample opportunity for public airing of issues focused on discrimination on the basis of genetic information. According to the author, the debate on genetic information and insurance discrimination has attracted "educators"

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from the insurance industry, the genetic research community, the biotechnology industry, and consumer groups. None of these groups is monolithic. Each has its own agenda. For example, as genetic information is becoming a household concept the research community wants to make sure that the public is on its side. The biotechnology industry's information campaign is focused on the right of Americans to have access to genetic testing, preventing insurance discrimination on the basis of test findings, and limiting the hand of federal regulation over the industry. The information of most interest to consumers focuses on how genetic information is being used to discriminate against individuals with disabling conditions and health risk factors. The insurance industry finds itself trading information in the interest of uniform regulatory requirements across states and assuring the public that only limited genetic information derived from specific laboratory tests might be subject to special premiums. Therefore, around an emerging, poorly understood, and polarizing issue, Congress may find itself in a virtual Tower of Babel. In areas of policy formulation where information is often used to champion a cause, the challenge is to raise the level of independent and objective data that may contribute to more informed legislative resolutions. In addition, the author suggests that the debate in the 104th Congress around genetic information as it relates to insurance discrimination highlights the importance of identifying the precise questions and problems that need to be addressed. In its absence, the dialogue gets diffused and distracted by other, competing issues. "The Information Trading Process: The Case of Medicare Payment Equity," by Susan Bartlett Foote, provides a number of valuable perspectives on the information trading process as it unfolds on Capitol Hill. The author identifies three key players: the producers of information, the consumers of information, and the information agents. Often derided as "special interests" or "mere lobbyists," at their best they can help to interpret and translate a complex and highly technical knowledge base and serve as catalysts to convert policy research into policy results. From the perspective of having played all three roles, Susan Foote reflects on information trading as it has unfolded around the current debate around payment inequi-

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ties in Medicare's average adjusted per capita costs (AAPCC). In the case of AAPCC, the major stakeholders have had a special interest in keeping the issue under wraps, given the significant and for the most part adverse financial consequences of any change. Plans advocating a fairer and more equitable payment formula had to "get the story out," do important coalition building and hone a compelling message in the context of current congressional debate related to Medicare reform and budget reductions. From her key role in developing the Fairness in Medicare Coalition, the author offers three important points for any new group wanting to become an effective player and voice for change: (1) welcome the opportunity to testify at a public hearing—being a witness gives a group new on the scene important visibility among the trade press and key members of Congress; (2) develop principles and guidelines for what the group wants to accomplish, but maintain some flexibility as various legislative proposals are drafted; and (3) develop a cadre of dedicated champions. Anyone interested in public policy and affecting the policy process will find valuable lessons and pointers in this volume. The art of information and information trading in a political environment, while ever changing, continues to be a fascinating if not always edifying reality of the legislative process.