Reliable Information on the Internet

Written by Maryann Napoli at the request of the New Zealand Guidelines Group in anticipation of her appearance at the National Consumer Summit in Auckland, October 31, 2005.

  Much as I’d like to respond to this assigned topic with a list of sure-fire ways to identify trustworthy Web sites, I’m sorry to say that I cannot. From this USA-based consumer advocate’s point of view, there isn’t much I can wholeheartedly recommend out there. I wouldn’t think of relying on the standard sources like the American Heart Association and the National Cholesterol Education Program given their considerable pharmaceutical industry funding.

  And the fact that a board of academic physicians oversees a Web site’s content is no guarantee of high-quality information. Case in point is the U.S. National Cancer Institute’s Physicians Data Query (PDQ) database www.cancer.gov  I still see it as the best source of evidence-based cancer treatment information, despite the fact that I have found numerous gross errors in this Web site over the years. Lobular carcinoma in situ, for example, was described as a breast cancer (leading women to think immediate aggressive treatment is critical); whereas LCIS is merely a marker for cancer. In another instance, prostatectomy was described (in 1989) as the most common first choice treatment for prostate cancer—a misleading statement given the fact that there is no evidence that proves it superior to no treatment at all. Worse, the no-treatment option appeared in the “health professionals” section of the database but not in the material directed at “patients.” My critiques of the PDQ have always been taken seriously and often led to changes. “Watchful waiting”, for example, now heads the list of treatment options for men with early-stage prostate cancer…in both the “patient” and the “health professional” sections of the database.

  The American Cancer Society, on the other hand, was unresponsive when I asked why it instructs doctors to tell their patients about the risks and benefits only where it concerns the PSA screening test for prostate cancer. After all, that’s not the only cancer screening test with risks as well as benefits.

 Though the explosion of information available on the Internet is gratifying in many ways, it is still hard to find certain information crucial to informed decision-making. Just take a decision many of us will have to make: Should I take a prescription drug for the rest of my life? Millions of healthy adults around the world have accepted the idea that risk factors like bone loss and high cholesterol should be treated with lifelong drug therapy. 

 The woman with osteoporosis told to take the bone drug Fosamax will find lots of information about how the drug improves bone density. But how good is it at reducing the rate of hip fracture, the most serious consequence of osteoporosis?  It’s not easy to ferret out the three-year trial which found 2% of women on the placebo experienced a hip fracture, compared to 1% of women on Fosamax. These results are enlightening, considering how heavily promoted this drug is. Only 1% of the women on Fosamax actually benefited from the drug; and only 2% had a hip fracture without the drug. You can find this information at the U.S. Food and Drug Administration’s Web site (www.fda.gov). but it takes some doing. First, you must find your way to the right section of the site and then slog through reams of fine print of the drug labeling information that the pharmaceutical company publishes with FDA oversight.

  Even then, you wouldn’t know that this three-year trial provides the best long-term effectiveness information on Fosamax—and it applies only to elderly women with osteoporosis and at least one fracture. That doesn’t represent the primary Fosamax users in the USA, thanks to misleading drug advertising aimed at physicians. When Fosamax first came on the market ten years ago, its maker Merck mounted an advertising campaign featuring white women in early middle-age. No mention of prior fractures, but plenty of encouragement for bone-density testing (screening creates customers). As an antidote to this market-driven poison, osteoporosis researcher Susan M. Ott, MD, University of Washington, maintains an advertising-free Web site that helps women and doctors determine when drug therapy is and is not appropriate (http://courses.washington.edu/bonephys).

  Anyone about to go on an open-ended drug regimen would want to weigh the benefit against the odds of having a serious adverse drug reaction. Three years ago, when writing about the popular cholesterol-lowering drugs called “statins” (Lipitor, Zocor, Pravachol, etc.), I was pursuing that question on behalf of my readers with high cholesterol but no heart disease.  Fortunately, I found my way to a trustworthy source of drug information, Therapeutics Initiative in British Columbia, Canada (www.ti.ubc.ca Letter 48). It was the only place I found the odds of benefit compared to the odds of having a serious adverse drugs reaction. Five major trials have compared statins with placebos in people without heart disease. Only two trials, however, have released their serious adverse events (SAE) data! Working with what they had, the Canadian researchers combined the results of the two trials and found only one modest benefit to statins. These much-touted drugs reduced the odds of a non-fatal heart attack by 1.8% (in men only). But this modest benefit was canceled by a 1.4% increase in the rate of SAEs among the statin users! And if someone wants to check whether a particular statin—or any other drug—is so risky it should be taken off the market, there’s always the Washington, DC-based Health Research Group (www.citizen.org/hrg).

  Consumer advocates willing to take the time can find some gems of hypocrisy at the most mainstream of Web sites. Every November the federal government in the form of the U.S. Centers for Disease Control and Prevention scares us (via the media) with influenza death statistics. This has the desired effect of making people think they’re going to die if they don’t get a flu shot. (The death stats, by the way, are deeply suspect.) One consumer advocacy organization, the National Vaccine Information Center (www.909shot.com), led the media to transcripts of the FDA’s Vaccines Advisory Committee meetings freely available at the FDA’s Web site (though, once again, difficult to find). There for all to read were the flu experts saying in early 2003 that they had screwed up. One key viral stain had been omitted from the flu shot that was promoted vigorously as the 2003-04 flu season approached. Federal health officials just couldn’t bring themselves to be honest with the American public until the time to get a flu shot had passed. After all, we might not line up for our shots, and then the vaccine companies would have to discard their unsold products. Go to flu vaccine reviews at the Web site of the Cochrane Collaboration (www.cochrane.org), and you’ll find that, worldwide, flu vaccines haven’t worked very well in the last 35 years.

  I know people don’t want to hear this, but you practically have to become an investigative reporter to find what you want…or don’t yet know you want. One has to sift through a considerable amount of information on the Internet to learn how to determine what’s valid and what isn’t. My parting advice: No matter what the topic, start with a Google search (www.google.com). It produces a wealth of information—both good and bad—and often free access to entire articles.

Maryann Napoli, Center for Medical Consumers ©, November 2005

MALPRACTICE IS THE PROBLEM,
NOT JUST THE COST OF MALPRACTICE INSURANCE
By Maryann Napoli
(February 2003)

We are in the grip of a malpractice insurance crisis because doctors have threatened to strike, relocate, stop performing risky procedures, or increase their patient load. If you believe the media reports, the cause is "skyrocketing insurance premiums." Pregnant women are unable to find an obstetrician, and some areas of the country will be left without any surgeons. The cost of insurance premiums is rising, we are told, as a result of astronomical malpractice awards, many of them frivolous. The only solution is to put a cap on these awards. The double-digit health insurance inflation will be controlled once state legislators and Congress pass laws putting limits on awards for pain and suffering.

That's pretty much the scenario conveyed by the media whenever a malpractice insurance crisis resurfaces every five to ten years. Somehow the crucial issue of malpractice itself and ways to reduce injuries to patients rarely seem to enter the story. The crisis is always going to be solved by limiting the amount of money the injured person can receive. This is what passes for tort reform. Yet the last time a major study looked at malpractice, it found that the majority of people who were victims of malpractice did not sue, and of those who did go to trial, most lost their cases.

Interestingly, the dramatic increases in insurance premiums have nothing to do with the number of lawsuits or the relatively rare multi-million dollar malpractice awards. Like most of the country, the insurance industry lost money investing in the stock market, and the increased cost of premiums is intended to make up for it. Some insurance companies lost money because they did a poor job predicting future claims and made mistakes in setting prices for their policies. Moreover, federal government statistics show that the number of malpractice judgments has not risen nearly as fast as the premiums doctors are expected to pay.

Surgeons and obstetricians are in for the largest increases because they tend to get sued most often. In some areas of the country, they have fought back by withholding services, and now a physician financial crisis becomes a public health crisis once people are denied elective surgery or sent out of state for critical care.

The malpractice insurance debate centers not on compensatory damages but on the money awarded to people for pain and suffering. This has traditionally been a way to equalize the inherent unfairness in a legal system that bases the amount of compensatory damages on lost earnings, as well as medical costs. A malpractice-related death of an 80-year-old, a low-wage worker, or an infant are examples of cases that would automatically result in low compensatory damages. The pain and suffering award is used to level the playing field.

Last month, President George W. Bush proposed, "frivolous lawsuits be curbed with a $250,000 limit on pain and suffering awards by juries in cases that go to trial." Though the President contends that he is concerned about pregnant women and poor people without access to physicians, his position clearly mirrors that of the insurance industry and physicians.

The repeated use of the word frivolous in conjunction with malpractice lawsuits misrepresents the situation. In a recent letter to the editor of The New York Times, law professor Stephen Gillers wrote, "The president would put a $250,000 cap on a patient's damages for pain and suffering. But if a patient is entitled to any compensation for pain and suffering, her claim is by definition not frivolous. Frivolous claims are thrown out of court." Furthermore, many states have had a requirement to pay for an independent review of the case to determine whether there is good reason to even initiate a malpractice lawsuit.

Early last year, the American Medical Association identified New York as one of several states where the medical malpractice situation was considered to be a crisis. The Medical Society of New York State organized public protests against what it called an out-of-control medical liability system and warned that New Yorkers, especially pregnant women, would lose access to physicians. The culprit: "skyrocketing premiums."

With several other advocacy organizations, the Center for Medical Consumers looked into the allegations and found that organized medicine had launched a campaign of deception. Despite all the hype, there was no significant increase in medical malpractice premiums last year or in the number of medical malpractice lawsuits. Even the scare tactic of high premiums leading to a loss of physicians didn't pan out. New York State physicians have been paying the highest malpractice insurance premiums for years, yet it has the second highest number of physicians per capita of any other state.

We also found that-during the 1990s-a large percentage of malpractice payments were made on behalf of a small number of physicians and nearly 90 percent of New York physicians had never made a malpractice payment. Here is where organized medicine has completely dropped the ball, despite protestations that it is acting on behalf of patients.

The American Medical Association and other medical trade associations have effectively killed the Institute of Medicine's 1999 recommendation for a mandated reporting system for serious medical errors, which would be made available to the public. Furthermore, the IOM recommended that a system be created for periodic re-certification of physicians to assure that they keep their skills and information up-to-date. This is also opposed by organized medicine.
Once it was determined that a few physicians account for most of the malpractice claims in New York State, we supported legislation that would require the State Health Department to review these claims as an obvious way to identify problem physicians. Health care providers should tell the patient or the family members when they make a mistake that causes serious harm. This is a requirement of the physicians' own code of ethics.

But organized medicine continues to oppose the most basic reforms that might prevent injury. Isn't it time to ask why Congress and state legislatures are stampeding to adopt "tort-reforms" rather than embarking on a national effort to improve patient safety?

For More Information

-The New York State Malpractice Report is available at our web site (www.medicalconsumers.org).

-Each year between 44,000 and 98,000 Americans die as a result of medical errors, according to the Institute of Medicine. Read the IOM recommendations in its 1999 report entitled To Err is Human: Building a Safer Health System (www.nap.edu/books/0309068371/html). The report can be purchased in paperback from the National Academy Press, Washington, DC.