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5 The Effectiveness Initiative: Retrospective and Prospects William L. Roper I have a great affection for the Effectiveness Initiative, now an initiative not just of the Health Care Financing Administration (HCFA) or even just of the Department of Health and Human Services (DHHS) but of the entire government. It is a far-reaching endeavor that I think will bear fruit long into the future, and I am delighted to have had some small part in beginning it. One of the things that I am most proud of concerning my tenure at HCFA is the attention that the agency gave and is continuing to give to the whole area of quality and quality measurement, and effectiveness and outcomes research. I think this work has boosted the image of the agency not only before the outside world, but also in our own eyes. HCFA is no longer seen as an agency that does bad things to people. It is one that is in the process of producing very worthwhile information and good things for the American people. THE GOVERNMENT'S ROLE IN EFFECTIVENESS RESEARCH Let me comment on what it seems to me the government is doing in this Effectiveness Initiative. First, government has the unique capacity to call the nation's attention to an area of interest, to set something high on the nation's list of priorities. In the business of health care and health services research, I think that is what the government has done over the last couple of years. A matter that was formerly of passionate interest to only a few pioneering health services researchers is now an item of national importance. The government is also in the business of setting priorities as to how this research is going to be done. That is what Michael Fitzmaurice, at the National Center for Health Services Research, and HCFA are doing in part- nership with the IOM and other organizations around the country. We are 31

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32 EFFECTIVENESS AND OUTCOMES IN HEALTH CARE saying that these are the areas of greatest interest; this is where research should be done first. Yes, we would like the best information that could be developed on how to practice medicine, what works in medical practice across the board now, but we cannot do that, and so we have got to set priorities. That is what this whole exercise with the IOM is about. A second thing that the government is doing is committing unique resources to this research enterprise. My former colleagues at HCFA are the custodians of immense amounts of data, information that is of very great value to health services researchers. Henry Krakauer and others are shaping that information in ways that will be of real utility. Of course, we aspire to create data sets that will be even more useful in the effectiveness research that will be done in the future. The government has resources that go well beyond those of anyone in the private sector. What has now happened is the government has said we are going to make this information widely available and spur research in that fashion. The third thing that the government is doing is funding research in medical practice and clinical effectiveness. The Congress is working its way through appropriations for DHHS for next year. Thus far it has not seen fit to fund fully what the President asked for in his budget for effectiveness research. We hope that Congress will become convinced of the need to go yet higher in this area. We need to have a loyal cadre of people across the country pushing for the notion of health services research. I have for the last several years been convinced by my own rhetoric of the essential virtue of this endeavor. But I think it is going to take some arm-twisting as well. Anyone who has an interest in this had better get to work. A fourth thing that the government is doing is developing partnerships with a wide array of organizations and individuals to carry out effectiveness research. There are partnerships with foundations that have an interest in funding research themselves; with other payers, such as insurance companies, corporations, and Blue Cross plans; with organizations such as IOM and others; but especially with practicing doctors. It is absolutely essential that doctors across the country take hold of this idea and push it forward. It cannot just be an ivory tower matter, and it surely cannot be just a gleam in a bureaucrat's eye, however dedicated and smart that bureaucrat may be. It has got to be something that the average doctor in America sees as useful to him or her. That is why I think the American Medical Association's embracing this concept is such an important element in the whole Effectiveness Initiative. PROSPECTS The effectiveness and outcomes research enterprise has been given a high priority, not just by those of us who used to be in DHHS but by Louis

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POLICY AND RESEARCH ENVIRONMENTS 33 Hays, at HCFA; by James Mason, Assistant Secretary for Health; by Secre- tary of Health and Human Services Louis Sullivan in a number of respects; and, indeed, by President Bush. The President at Dr. Sullivan's swearing-in in March named research into cost-effective medical practice as a priority. I think this sets the tone for what the Bush Administration is going to be pushing for, from the top down. Second, I think Congress will increase support for research into medical practice. The leadership of the Congress Willis Gradison among the House Republicans, Henry Waxman and others of the House Democrats, Senate Majority Leader George Mitchell, David Durenberger, a leading Republican- are all pushing hard to further this enterprise. Individual members, even those not on the relevant health committees or appropriations committees, are being convinced that we must develop a much better knowledge base for medical practice and health care financing than we now have. It is not sufficient to say that we do not like the fact that we are spending 12 percent of our economy on health care. We have got to say, "How can we spend that money better?" The answer, it seems to me, is to develop a research base for guiding medical practice in the future. Finally, as I alluded to earlier, the future of medical effectiveness and outcomes research does not depend on leaders in government, whether they are in the executive branch or the legislative branch. These people are distracted with other things and have transient tenures. The long-term future of this depends on broad support across the country in academic research centers, among practicing physicians, and the American public generally. Support is growing, but it needs to grow much more widely, much more quickly. That is why conferences like this one are so very important.