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First published in Hospitals & Health Networks OnLine, October 6, 2009
Research serves a pivotal role in health care, providing critical information that can move both clinical and structural efforts forward. Much of this research is invaluable, especially when providers respond to it. On the other hand, health care research has some major problems, and, given the fiscal stress in our sector these days, legitimate questions should be raised about how we spend public funds in the research arena.
First, I want to make it clear that I think research makes health care's world go 'round. It teaches us what we have done right and wrong; it evaluates what we are doing now; and it points the way to how we might do things better. Were it not for research, we would be without such aids as antibiotics, prostheses, vaccines, modern imaging, information about the uninsured and underinsured, proper methods for preventing infections in ventilator-dependent patients, and evidence of practice pattern variations, to name just a few.
Furthermore, I'm a research writer, as anyone who has ever visited my paper- and file-strewn hurricane of an office can attest. I conduct research myself, I interview researchers, and I report on research. I love research.
And it is for these reasons that I am concerned about how tens of millions of public dollars are misspent in the research arena, whether on useless or marginal studies, repetitive studies that tell us what we already know, self-serving studies, or out-and-out malfeasance.
The dogs were the final straw.
I had just covered a big research meeting and was pretty frustrated; although there were some excellent presentations, many of the studies were covering very old ground indeed, and some duplicated each other. During one time slot, two presentations addressed exactly the same topic, the answer to which a 12-year-old could produce: to wit, that people who have previously been uninsured and then acquire health insurance use the health care system more than they did before. Duh.
And then the press release came in: Federal researchers, armed with nearly $2.3 million in public funds, came to the astounding conclusion that the reason that dachshunds, corgis, basset hounds and other short-legged dogs are built that way is due to a genetic mutation. Apparently the mutation occurred within a relatively short time frame. No kidding; really?
Another study by the same researchers — I don't know how much it cost; I was too irritated to find out — stated that a small number of genes are responsible for determining the length of dogs' fur from one species to another. Gosh.
I am hardly the first person to peek into publicly funded research and be appalled about what is under some of its rocks. The champion of exposing such problems was the late Wisconsin Sen. William Proxmire (D), who in 1975 initiated his famous Golden Fleece Awards, by which he "celebrated" the stupidest publicly funded research project of the year. Among his best picks were:
(Sen. Proxmire died in 2005, with perhaps his greatest achievement not being the Golden Fleeces for which he is remembered, but congressional approval, after he fought for it for 20 years, of an international agreement to oppose genocide. Not that it has ever been enforced, but it was a nice thought.)
In 2000, at Proxmire's request (he was retired and ill), Taxpayers for Common Sense reinstituted the Golden Fleece Awards. Among their honorees was the infamous Alaskan "bridge to nowhere." A sister organization in Oregon recently honored a lavish ($1,932 per month) health insurance program for employees of the Portland, Ore., Tri-County Metropolitan Transit District — the highest cost in the country. (I'm in the individual market, and I don't pay that much!)
Just so you know how bad it gets, in 2000, Taxpayers for Common Sense inducted into their Hall of Fame ("honoring lifetime achievement in defending the American taxpayer from waste"), then-South Carolina Rep. Mark Sanford (R), the current (married) governor of the same state who has a "soul mate" in Argentina he repeatedly used government resources to visit, allegedly on official business.
Faced with this foolishness, I decided to visit a few federal Web sites (and I didn't even scratch the surface) to find out how this country-with nearly 50 million uninsured people, a public education system that would make the Third World blush, a crumbling infrastructure and a national debt the size of some countries' entire budgets-spends its health care research dollars.
Among the standouts were these investigations and findings:
But here's the best one: Someone got funding to investigate sexual dysfunction in women by studying sexual dysfunction in female marmosets. (Maybe they should discuss the situation with the male marmosets involved. Besides, that could be another six- or seven-figure grant….)
The computer tech was visiting again the other day — not an unusual event in my life, given that I can barely operate a toaster and yet am required to use extremely complex machines powered by buggy, dysfunctional software — and we were talking about the fact that the idiots who promulgate viruses and produce the crummy software and hardware that are incompatible with other software and hardware and so forth have created a new industry.
Yes, automobiles do develop problems, and we have to get them fixed-but that is nothing compared with the wonderful world of information technology, where nothing works for long and where the techies of this world are producing billions of dollars for their employers, fixing problems that should have been addressed before the stuff was ever foisted off on the public. But if the hardware and software manufacturers ever cleaned up their acts, then where would the geeks be?
Well, it ain't no different in health care research. I have examined thousands of research studies, and rare is the instance when the researcher ends with anything more than the ubiquitous phrase, "more research is needed." Of course! God forbid that we should ever actually find something out definitively! Then we might do something about it! No, instead we are trapped on this hamster wheel, conducting more and more research on the same subjects, when we knew the truth a long time ago. Because researchers do research, and so more research is needed. Always.
Yes, I'm being extremely cynical. But I do think that accountability in health care research is lacking. And there are several other problems.
First, for lay folks like us to find out how much money went to which researchers, and for what, and what was learned, is nearly impossible. The National Institutes of Health (NIH) were forced by a 2006 law to list who gets what grants, for how much and to what end, but there are more than 200 categories of grants, many efforts are multiply listed, and all you get is an abstract without any indication of findings.
Second, the results of many of these studies are published in peer-reviewed journals (which is necessary in order to verify the results; I'm a reviewer, and we are not paid for this work). But most of these journals require subscriptions, so even though you paid for it with your taxes, you can't learn about it unless you pony up. This is not appropriate for publicly funded studies.
Third, a good bit of research doesn't turn up a whole lot of new knowledge. At a recent meeting I attended, the presenter's final slide read: "There is some evidence that the program is effective in reducing mortality, but it is hard to draw definitive conclusions. Given the size of the program, detecting an effect, if there is one, is difficult."
"More research is needed," obviously. I don't oppose that, but I must ask why, if this was such a small sample or there were other limitations, the researchers didn't go back to the drawing board before they started the darned thing.
Fourth, not all research projects are well designed, which dooms them to failure (although everyone will get paid, anyway). My favorite example is the proposal, years ago, that a study be done of the health insurance status of homeless people; the funder suggested that this survey be conducted by telephone.
Fifth, priorities get skewed, which is largely political. You need a certain vote in Congress, and cancer research gets a boost. A Parkinson's patient testifies before Congress, and Parkinson's gets a boost. Someone in the administration has a relative with mental illness, and mental illness gets a boost. And if you don't happen to have a powerful advocate, you lose.
According to its own Web site, in 2008, the NIH did not give out a single grant for research on health disparities or women's health. Not one.
Sixth, many researchers are steeped in conflicts of interest. When Bernadine Healy, M.D., was director of NIH under George H.W. Bush, she ruled that individual researchers or research organizations could patent individual human genes. So much for service to humanity. Most researchers are now allowed to patent or copyright their products, even when the work that produced them was funded with taxpayer money, and then, if a patient can't afford the thing when it becomes available, well, tough.
I gave a talk about this once at a research meeting, suggesting that maybe, just maybe, if the public funded your research, then you should repay the public before you go out and make millions on their backs. It was not the best-received speech I have ever given. These folks had dollar signs in their eyes, and because of that fiscal myopia, they had completely lost sight of the fact that some of the money they were using came from uninsured janitors and cancer patients who had lost their coverage.
Seventh, a related point is that there has been, and likely still is, a great deal of corruption in health care research. Federally funded researchers produce favorable reports about new drugs whose manufacturers are paying the researchers for speaking and consulting, often in the hundreds of thousands of dollars — researchers who form their own biotech companies, approve the product, then patent it for their own profit.
You think I'm being overdramatic? Earlier this year, a noted academic researcher was found to have received $2.8 million from a drug manufacturer, five of whose new drugs he was researching. The facility involved received a total of $251 million in federal funding in the last fiscal year. Another NIH researcher took $110,000 from drug companies while evaluating their products (obviously, he was not as skilled a negotiator as his compadre). This is a cesspool, and I do not think it will be cleaned up easily.
Eighth, when research does ignite a spark, and health care providers respond — refusing to give antibiotics for a viral infection, or reducing nosocomial infections, or integrating acute and long-term care — then why shouldn't some of the money go to the providers? Is there some reason that academic researchers are a higher form of life than visiting nurses or infection control workers or emergency physicians?
Can anything be done about this? It's tricky, because no one, including me, wants to cripple meaningful, productive research. But that doesn't mean that the public should be lied to or ripped off. So, for whatever it's worth, here's a research ethics agenda:
First, researchers should not have any financial ties to organizations whose products or services they are investigating (be it drugs or insurance practices or anything else); failure to disclose such ties should result in forfeit of the grant and prohibition of any future grants. In other words, conflicts of interest should not be tolerated. One strike and you're out.
Second, if a publicly funded product or service is found to be marketable as a commercial entity, the public's investment should be repaid. This could be done through a revolving fund that supports "unprofitable" research, or a fund that subsidizes (at cost) use of the product or service by low-income or uninsured individuals, or by some other means. In any case, the taxpayers have a right to some kind of return on investment.
Third, more research is not always needed; as I told a colleague a while back, after all the studies that have been published, I could probably personally describe most uninsured Americans. Let us stop going over old ground again, and again, and again, and agree that when we know that something is wrong, we should do something about it. Enough, sometimes, is enough.
Fourth, let's stop spending most of our money identifying problems and start identifying and funding solutions. And that means (horrors!) taking some of the money from academic theoreticians and policy wonks and spending it on identified best practices employed by people on the front lines.
For example, African-American women die in childbirth more than members of any other racial or ethnic group. We have known this for decades. Why don't we find out which providers are doing the best job in reducing African-American maternal mortality? Why don't we throw money at those who are addressing the problem, not those who are identifying something we have known about for a hundred years?
But the structure of research funding makes this difficult. Big academic entities with track records are favored; little guys in the trenches are not. Some years ago, I learned of a program at a hospital in a low-income minority community that was training formerly homeless women who had turned their lives around to become nurses. The program ended because the hospital couldn't raise any money for the effort. It couldn't afford a grant writer, it didn't have a marquee name, and it didn't have the right connections. The only thing it was doing right was doing right.
Fifth, the current presidential administration has made "transparency of information" one of its hallmarks. So let's include health care research. Any research effort that receives federal financial support should be subject to public scrutiny: Who's doing the work, to what end, and with how much funding? What was learned, if anything? Did any marketable products come out of it? How much money was made? What benefit accrued to the taxpayers?
This information should be available, on demand, without the inquirer having to jump through hoops or figure out incomprehensible language or get stuck with a brief abstract and no further information. If it's good research, those who are conducting it should be willing to share it with the people who paid for it. If it isn't good research, shame on them. And shame on us for continuing to fund it.
And if you happen to run into a lady marmoset, ask her about her sex life; it could be worth millions.
Copyright ©2009 by Emily Friedman. All rights reserved.
Emily Friedman is an independent writer, speaker and health policy and ethics analyst based in Chicago. She is also a regular contributor to H&HN Weekly and a member of the Center for Healthcare Governance's Speakers Express service.
First published in Hospitals & Health Networks OnLine, August 4, 2009
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