JAMA Forum: Bill Would Gut Patient-Centered Outcomes Research

Aaron Carroll, MD, MS

Aaron Carroll, MD, MS

Last week, the House Appropriations subcommittee on labor, health and human services, and education approved a spending bill, which moves along this week to the full committee for consideration and possible amendments. Then, it’s on to a vote in the House of Representatives.

The bill is generating a fair amount of attention because it takes some drastic steps with respect to government funding of research. Specifically, per Academy Health:

[I]t completely eliminates the Agency for Healthcare Research and Quality [AHRQ] (Sec. 227), and prohibits any patient-centered outcomes research (Sec. 217) and all economic research within the National Institutes of Health [NIH] (Page 57, line 19).

I have to state my conflict of interest right off the bat. I’ve been funded by AHRQ in the past, and I continue to have some of my research funded by them today. But that doesn’t mean I can’t discuss the important work that might be eliminated if this bill were to pass as currently written.

Let’s start with AHRQ. The agency’s mission is “to improve the quality, safety, efficiency, and effectiveness of health care for all Americans.” Its budget in 2010 was $372 million, and about 80% of that money was invested in grants and contracts to fulfill its mission. Its areas of focus include:

  • Comparing the effectiveness of treatments
  • Quality improvement and patient safety
  • Health information technology
  • Prevention and care management
  • Health care value

We spent about $2.6 trillion on health care in 2010. For all that, we have a system that isn’t close to universal and that by many measures is often shockingly low in quality. It would seem that it might be in the best interest of the health care system in general to reduce spending and improve quality.

More than any other NIH agency, AHRQ is specifically dedicated to these goals. It has been singularly focused on health information technology, which many people believe can help improve care and perhaps make things more efficient as well. It also has been committed to quality, value, prevention, and care management. Additionally, AHRQ has been the place researchers could go to seek funds to improve care for diseases and care processes that don’t easily fall into the biological interests of other NIH agencies.

AHRQ has had somewhat of a rocky history. When it was originally authorized in 1989, it was called the Agency for Health Care Policy and Research. But concerns that its focus might be more on policy and less on science led to its changing its name in 1999. Still, some of its research foci remain unpopular, especially those dedicated to comparative effectiveness research.

The chairman of the subcommittee, Rep Denny Rehberg (R, Mont) maintains that this decision is not based on AHRQ’s focus, but on a need to bring the budget of the government into line. That’s hard to square, though, based on the fact that AHRQ’s funding represents about 1% of the entire $30.9 billion NIH budget.

Moreover, the research AHRQ funds will not be funded by any private industries. Pharmaceutical companies will continue to invest in research to develop new drugs. Medical device companies will continue to invest in research on new devices. But the broad areas of prevention, patient safety, and value are not the domain of industry. They are part of the public good. If the government will not fund them, it’s unlikely the research will occur at all.

Moving past AHRQ, the bill targets all patient-centered outcomes research. This is likely a direct attack on the Affordable Care Act because it established the Patient-Centered Outcomes Research Institute (PCORI). As the House has now voted to repeal the ACA more than 30 times, it’s not surprising that Republicans have targeted this new institute, established by the law, as something that has to go.

Many lawmakers have also made public their distrust of comparative effectiveness research. But PCORI has a much broader mandate. Much research in the past has been focused on the outcomes that we as clinicians value. But there is a growing sense that outcomes that matter to patients, such as quality of life, are just as critical. PCORI is tasked with finding new ways to measure these types of outcomes and researching ways to make them better.

This kind of work is expressly prohibited by the bill. Not only would PCORI be gone, but so would any research that focuses on patient-centered outcomes. Why? Does the subcommittee feel that patient-centered outcomes don’t matter? Should they be expressly prohibited? It’s hard to imagine why this should be the case. It would be nice to hear an explanation of why this is a good idea.

Finally, all economic research in the NIH is prohibited as well. Given that something like 18% of our economy is health care, it’s likely a good idea to conduct some research into the area.

I would not presume to tell anyone how to feel about this measure. But I can’t ignore the implications of the bill, and I feel compelled to point out what they might mean. Research in certain areas is a public good. When that’s so, it’s the role of the government to fund it. No one else will.

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About the author: Aaron E. Carroll, MD, MS, is a health services researcher and the Vice Chair for Health Policy and Outcomes Research in the Department of Pediatrics at Indiana University School of Medicine. He blogs about health policy at The Incidental Economist and tweets at @aaronecarroll.

About The JAMA Forum: To provide ongoing coverage throughout this election year, JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide insight about the political aspects of health care. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.



Categories: Comparative Effectiveness, Evidence-Based Medicine, Quality of Care, The JAMA Forum

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