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Researching the truth

by Emily Friedman

First published as the cover story in, 18 July 2005

Debunking Medicaid and Medicare myths.

One of the myths associated with the creation of Medicare and Medicaid is that it also created what is known as health services research, or HSR-the study of nonclinical aspects of healthcare, such as economics, quality and how the system works.

Actually, HSR can be traced much further back, even to Florence Nightingale, who believed that the outcomes of surgery should be made public. (We're still fighting over that 150 years later.) And long before Public Law 89-97 - the legislation that created Medicare and Medicaid - was enacted, statisticians, epidemiologists and economists were trying to understand what legendary researcher Kerr White dubbed "the ecology of healthcare."

Even the term "health services research" predated the law; the phrase was born at a meeting of National Institutes of Health researchers in 1959. Previously, it was called medical-care research, a term that confused just about everybody.

The involvement of the federal government in HSR also predated Medicaid and Medicare. Government researchers were conducting studies as early as the 1930s. And in 1955, the annual Hill-Burton Act appropriation included $1 million for research on "hospitals and medical facilities."

But what Medicare gave HSR was priceless: a national database of patients, each with a unique identifier, so his or her healthcare interactions could be traced. Dorothy Rice, former head of the National Center for Health Statistics, recalled that "some of us in the Johnson administration (she worked for the Social Security Administration at the time) felt very strongly that data collection systems should be part of the program." Indeed, a 1963 survey of American seniors conducted by Rice and her colleagues was pivotal to the passage of the Medicare-Medicaid law.

Once the federal government started funding healthcare in a big way, the need for more information became obvious, especially after underestimates of the programs' costs led to great concern in Congress. The National Center for Health Services Research and Development was established in 1968. It later evolved into the Agency for Health Care Policy and Research, and still later became the Agency for Healthcare Research and Quality. It both conducts and funds HSR. The Health Care Financing Administration, created in 1977, now the CMS, also began funding research.

Where there are grants, there are researchers, and as Medicare, Medicaid and the National Center grew, so did HSR. Rising interest in this research on the part of private foundations and states and other federal agencies didn't hurt.

The new field soon outgrew its uncomfortable role as a subset of other organizations' activities. Partially as a result of that discomfort, and partially because of sheer growth in numbers (no pun intended), the Association for Health Services Research was founded in 1981; it is now known as AcademyHealth. Its 2005 annual meeting drew 2,300 people.

David Helms, president and chief executive officer of AcademyHealth, says Medicare and Medicaid "gave an underlying purpose to the field. With new financing came important questions about how that financing could lead to improved access and coverage, and how that would affect outcomes and health status."

Today, HSR informs health policy decisions; shapes budgets and appropriations; and reinforces or demolishes proposals for system change, coverage and quality. It is also a huge enterprise involving thousands of people and affecting the lives of most Americans and millions of people in other nations.

But it has its problems, one of which came with the political territory. Medicaid data are spotty and inconsistent. Rice had urged the Health, Education and Welfare Department, now HHS, to establish a Medicaid database, but the bruising political fight over the law made federal authorities unwilling to dictate to states what data they should gather.

Other problems have to do with the research itself. For example, are the results relevant to anyone other than policy wonks? It might be interesting to learn, for example, how long chiropractors in Manitoba take for lunch, but the relevance of that information is, shall we say, highly limited. Also, data collection and research take time, and often by the time results are available, healthcare has moved on.

Even very relevant research often cannot get over the hump of inducing people to apply it. HSR has established beyond even a reasonable doubt that having a "medical home" - a physician, clinic, or other regular source of care - improves health and reduces costs; yet tens of millions of Americans still depend on a patchwork of emergency services and multiple providers. Perhaps HSR's greatest failure has been its inability to be translated into practice. At this point, we really should not have to be urging healthcare workers to wash their hands.

Two other issues involve ethics. In some cases, publicly funded HSR leads to a marketable product. Researchers have gained patents, formed corporations and made a great deal of money with little evident benefit recouped by the taxpayers who paid for the work. Years ago, ethicist George Annas pointed out that clinical research is often conducted on low-income people who will never benefit from its results. Sadly, sometimes the same is true for HSR.

But HSR's biggest challenge is politicization. Many HSR organizations tend to have an ideological bent. It is highly unlikely that the exact same study, using the exact same data, would produce the same conclusions from the conservative Heritage Foundation and the liberal Families USA. Not surprisingly, funders have been known to give money to researchers who share their ideology. Government is not exempt.

Years ago, Ronald Reagan purportedly said, "If you get in bed with the federal government, you can expect more than a good night's sleep." HSR continues to learn the truth of this statement. And when ideologically tainted research influences policy decisions, all kinds of mischief can result; it certainly was a contributing factor to the failure of the Clinton health plan.

Overall, the 40 years during which HSR, Medicare and Medicaid have coexisted and influenced each other have produced more good than harm. Although some countries are starting to catch up, the U.S. still knows more about its healthcare system than does any other nation. We continue to self-examine, to prod and test healthcare, tweaking it, hopefully improving it and trying to protect it and its patients from harm. Political though the environment may be, it is certainly better than trying to shape a system in the dark.

First published as the cover story in, 18 July 2005

Emily Friedman 2005

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