While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
Since its beginning as a national philanthropy in 1972, the Robert Wood Johnson Foundation has been in the business of fostering social change. To a great extent, whether it has done so or not has been measured by its effect on policy, particularly at the federal level. A Foundation-funded program that leads to a new law or federal funding is considered the equivalent of hitting a home run.
The idea of a philanthropic home run being determined by the federal government’s adoption of a new law or policy runs smack into the dominant political and economic belief system of our day—that market forces are the best, and perhaps the only, way to bring about change and that government, especially the federal government, should play a minimal role at best. In this environment, it is fair to ask whether it is reasonable to expect the government to pick up and expand programs that the Foundation started. In baseball parlance, should the Foundation continue to swing for the fences?
The Robert Wood Johnson Foundation Anthology may be able to shed some light on these questions and provide a historical context from which to approach them. The Anthology attempts to give readers an understanding of what the Foundation did, why it did it, and what it and others have learned from the experience. Some of what has been learned has to do with the process of going from demonstration projects to policy change and determining when, where, and how it is possible.
In the 1970s, the Robert Wood Johnson Foundation developed a model on which its reputation was based for many years. It funded large demonstration projects—testing an idea or variations of an idea in a number of locations—in the hope that the federal government would adopt the idea, expand it nationwide, and give it continued funding. At a time when people believed that it was government's role to improve their well-being (and that government could do a good job at it), this approach worked in a number of cases.
One of them was the development of an emergency medical services system. Working hand in glove with the federal government at a time when hearses, because of their ample leg room, doubled as ambulances, the Foundation funded demonstration projects that led to the creation of the system of emergency care we have today. It was a home run. Another home run was the establishment of the fields of nurse practitioners and physician assistants. In the early 1970s, with the expectation that national health insurance was just around the corner, the Foundation tested different approaches to making sure that trained personnel would be available to meet the expanded need for care, including a new category of what was called at the time “physician extenders:” nurse practitioners and physician assistants. Employing an approach built around demonstration projects but also including a large training component, fellowship programs, and even the formation of professional societies, the Foundation was able to work with and influence the federal government to promote the training and deployment of nurse practitioners and physician assistants.
With the election of Ronald Reagan in 1980, the social and political landscape changed dramatically. Government, especially the federal government, was seen as part of the problem, not part of the solution. The solution was considered, by and large, to be the market. Funding of social programs devolved to the states through block grants, and the likelihood that the federal government would pick up even a successful pilot program diminished significantly.
Still, the Foundation did hit some home runs in the 1980s. One of them was the Health Care for the Homeless program, funded jointly by the Robert Wood Johnson Foundation and the Pew Charitable Trusts, through which thousands of homeless people received health assessments, services, and referrals through primary care clinicians located in shelters. The program became the template for the hundreds of clinics supported in many cities under the 1987 McKinney Act, the major federal legislative response to homelessness. Another was the AIDS Health Services program, which between 1986 and 1991 tested a San Francisco community-based model of providing prevention and treatment services. As one of the few foundations funding AIDS services, the Robert Wood Johnson Foundation worked closely with federal officials in planning, implementing and evaluating the program. The program provided the basis for the Ryan White Act of 1990, the primary federal AIDS legislation.
The change in Washington during the 1980s prompted a rethinking of strategy at the Robert Wood Johnson Foundation. Although Washington remained a focus of the Foundation’s efforts, more attention was given to state governments and to organizations outside of government. For example: A pilot project in Florida that provided health insurance to children through their schools blossomed into a statewide program that was then picked up by half a dozen other states.
The Dental Training for the Care of the Handicapped program (which began in the 1970s), in which 11 schools of dentistry incorporated services for handicapped patients in their curricula, led to the American Dental Association’s decision to include care for the handicapped as a specific teaching area to be evaluated during accreditation site visits. During the 1980s, programs for instructing dentists in how to treat handicapped patients were started in virtually all of the nation’s dental schools.
In 1978, the Foundation funded an experiment in Elmira, N.Y., conducted by David Olds, under which trained nurses visited disadvantaged pregnant women during their pregnancy and for a period of time after birth. The experiment was repeated with various permutations in other locations through the 1990s. During this time, the idea of nurse home visitors caught on and was adapted by at least four state governments (Colorado, Hawaii, Missouri, and Oklahoma) and was taken nationwide on a limited basis with funding from Ronald McDonald House charities.
With the fall of the Berlin Wall in 1989 and the collapse of the Soviet Union, the triumph of the market was unchallenged, and social change—in the health field and elsewhere—was built around market forces. In that context, the prospect of health care reform, based on competing managed care organizations, dominated the early 1990s. The possibility of health care reform provided the Foundation with an opportunity to hit a game-winning home run—to parlay the many years of demonstration projects, research, and leadership training it had funded into national health policy. Health care reform at the national level did not, of course, materialize, and its failure was followed by a wave of privatization and consolidation in the industry.
With the potential home run having been caught, as it were, on the outfield warning track, the Foundation turned to a different approach to expand insurance coverage. Rather than trying to catalyze governmental change, it assisted the implementation of existing government policies and programs. The Covering Kids Initiative, for example, supported Medicaid and the State Children’s Health Insurance Program by letting families of eligible children know that they could enroll their kids in these government programs. It evolved into Covering Kids & Families, which sought to help states to expand coverage not only to children but to other eligible family members. The Medicaid Managed Care program attempted, among other things, to improve the way state governments purchased medical services for their Medicaid populations. At the same time, the Foundation did not give up on the idea of promoting affordable health care coverage for all. It funded research on national health insurance options, convened meetings of key players, and to keep the issue alive in the public’s consciousness, developed an annual communications campaign called Cover the Uninsured Week.
In the 1990s, the Foundation also developed new strategies to bring about social change in the context of its initiatives to reduce smoking and to improve end-of-life care. Success in these endeavors was measured not only by policy change—although that remained important—but also by changes in the public’s attitude and in the behavior of individuals. This called for a wide-ranging approach, one that evolved during the decade.
Tobacco control illustrates the variety of means used by the Foundation. In 1991, at the urging of the Foundation’s new president, Steven Schroeder, the board adopted a new goal of reducing the harmful effects and irresponsible use of alcohol, drugs and tobacco. With respect to smoking, the Foundation gave a series of grants to strengthen the research base and develop a corps of tobacco-policy researchers. Foundation-supported tobacco research focused largely on policy; it funded research, for example, which found that tobacco taxes reduce smoking among teenagers. Complementing its scholarly initiatives, the Foundation funded the Center for Tobacco-Free Kids, a high-profile Washington, D.C., advocacy group, which played a visible role during the tobacco-settlement negotiations and which worked with state organizations to reduce young people’s access to cigarettes. It funded the SmokeLess States® program, housed in the American Medical Association, which helped state coalitions improve tobacco-control policies, particularly those focused on raising tobacco taxes and reducing secondhand smoke. In its efforts to help people stop smoking, the Foundation funded the development of tobacco-cessation standards, which were adopted by the federal government and used as a tool for businesses to measure the quality of managed care organizations. The breadth of the Foundation’s tobacco-control strategy is suggested by its funding of programs targeted at getting pregnant smokers to quit, publicizing the dangers of secondhand smoke, making counseling on tobacco cessation a normal component of preventive care in HMOs, and persuading young people not to start using chewing tobacco. In sum, the Foundation’s approach to tobacco control was a comprehensive one that worked on many levels to bring about policy, systems and behavioral change.
The Foundation adopted a similar wide-ranging approach toward end-of-life care in the mid-1990s after a large Foundation-funded research study found that the wishes of hospitalized terminally ill patients and their families were routinely ignored. It funded initiatives that developed palliative care programs at major medical centers, increased the attention given to end-of-life care in medical and nursing textbooks, produced a series of articles in medical and nursing journals, and organized coalitions of people working to improve end-of-life care. Its efforts, and those of the Open Society Institute, led the New York Times to conclude, “The sharp increase in research on death demonstrates the growing power of philanthropy almost to create an academic field.” In fact, the efforts of the two foundations helped advance the field inside and outside of academe.
In the 2000s, it became clear that market forces would continue to dominate political and economic thinking and that the role of government—at least the federal government—would continue to be minimized. The federal government’s deficits led budget cutters to apply the axe to social programs, and financially strapped state governments were forced to cut back on social programs such as Medicaid. Not promising terrain for a foundation seeking to be an impetus for government policies or programs directed toward social change!
Under the impetus of Risa Lavizzo-Mourey, M.D., M.B.A., who became the president and chief executive officer of the Robert Wood Johnson Foundation in January, 2003, the organization developed an “impact framework” that articulates its long-, medium- and short-term goals. With one exception—the coverage team that seeks “enactment of a national policy ensuring stable and affordable coverage for all by the year 2010”—the goals set by the Foundation are not targeted toward government. For example, the childhood obesity team, which has set a goal of cutting the percentage of overweight children by half by 2015, plans to do so by working with schools and communities, funding policy research, and developing communications strategies. The disparities team, whose goal is reducing racial and ethnic disparities in the care of targeted diseases by 2008, is working with health care plans, providers and purchasers.
As Lavizzo-Mourey notes in her foreword to this volume, the Foundation is now working to bring about social change by using a variety of approaches—what she terms “the five Cs.” Not only is it funding research, training, advocacy, public-private partnerships and communications, it is also using its influence to bring people together, generate partnerships, coordinate a variety of efforts, and give prominence to issues it judges to be important.
A similarly broad strategy has been associated with some of public health’s success stories. In areas as different as auto safety, lead-free gasoline, fluoridated water, and tobacco control, change was brought about through a combination of research, advocacy, media attention and legal and regulatory action.
To answer the question with which we began: Yes, it is possible for the Foundation to hit home runs—to affect major policy change at the federal level. But in the prevailing economic and political circumstances, it is difficult. This does not imply giving up on improving U.S. government policy, but it does signify the need to use all the means available to the Foundation and to consider all levels of government and nongovernment as opportunities to foster social change. Although it is still possible to hit a home run, one can also score with singles, doubles and deft base running.
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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