TRIBUNE PHOTO: JONATHAN HOUSE - OHSU oncologist Dr. Vinay Prasad has released a study showing how medical studies get deceptively hyped.Medford resident Michael Framson knows he is setting himself up for some heat. He’s an intelligent man and he reads a great deal — especially now that he’s retired.

Framson is a volunteer for a national anti-vaccine organization, putting his name on op-ed pieces warning parents about the dangers of vaccines.

Framson, 67, knows there is a wealth of scientific evidence showing that all children benefit when all are vaccinated. And he has read material debunking the idea that childhood vaccines cause autism. But there’s this other idea that just won’t go away.

Framson reads media reports of the latest medical studies and then he goes and reads the actual studies, starting with the last sections, where researchers list the limitations of their studies.

“If you really unpack them and critique them you find where the weaknesses are, and those weaknesses are rarely articulated in the media,” Framson says.

That idea that won’t go away? Framson doesn’t trust scientists, not like he used to.

Forgive Dr. Vinay Prasad if he saddens when he hears that. Not because Prasad, an Oregon Health & Science University oncologist, agrees with Framson’s view of vaccines. He does not. It’s because he’s becoming all too familiar with at least one of the reasons people like Framson hold such views.

Last week, Prasad published the second in his series of studies looking at exaggeration and hyperbole in scientific reports. This latest study of focused on cancer drugs, and revealed that media reports about new experimental drugs consistently use words like “miracle,” “game changer” and “breakthrough” even when the research provided little science to back up the claims.

For that, Prasad says, both scientists and the media are to blame. But his study last year shined the light squarely on the deception practiced by researchers. In one year Prasad found 29 studies published in scientific journals that used the word “cure” in describing new cancer treatments.

As far as Prasad is concerned, in his lifetime there has been only one new cancer drug that fits his definition of cure — Gleevec, developed by OHSU’s Brian Druker.

Prasad’s research revealed that nearly half of the oncology articles that used “cure” in their titles used it in reference to cancers currently considered incurable. Fourteen percent of the studies that used superlatives involved compounds that had not yet even been tested on people — they were still in the laboratory stage.

“The reason that’s so bad is, the likelihood that something at that level of study will help somebody coming to the clinic is akin to winning the lottery,” Prasad says.

“People have been duping people who are sick and dying for many, many years. This is the modern incarnation,” Prasad says.

Which brings the OHSU physician to one of the hot topics in research these days — the number of studies that were not reproducible when other scientists tried the same experiments. In 2012, researchers at California-based biotechnology firm Amgen replicated 53 landmark studies and found they produced the same results in only six of them.

“The pressure to find a single finding is so great in biomedicine that people are finding them all the time and reporting them all the time, but very few of them are actually true,” Prasad says. “It’s all exaggeration, and I think it leads to mistrust.”

Cutthroat business

Maybe, says Yale University cardiologist Harlan Krumholz, who for years has been calling for more transparency and honesty in medical research. As far as research hyperbole goes, scientists are just acting like everyone else these days and most people understand that, Krumholz says.

“There was a time when scientists were extraordinarily humble and wouldn’t exaggerate their claims,” Krumholz says. Now? Funding for science is a cutthroat business.

“Everyone’s selling their idea and their products, and (scientists’) studies are their products,” he says.

The exaggeration is so blatant, in Krumholz’ view, that most intelligent people don’t take too seriously the claims they read in newspaper headlines.

“If even 1 percent of all the promises were true everyone would be living forever,” he says. “People know there’s a lot of hype.”

OHSU’s Prasad isn’t so sure the exaggeration in science is harmless. Or that scientists and physicians shouldn’t be held to a higher standard than most fields. Even if most people understand hype, it’s the most vulnerable — cancer patients, for instance — who are the most likely to be duped. Every few months, he says, a cancer patient comes to him with a copy of a report on a new medical study, full of hope based on the claims in the report. Just last week he saw one that touted “cancer fighting grenades” in its headline.

Often, Prasad says, he becomes the guy “that has to let the air out of the balloon.” Not all the way, he says, because as a cancer doctor he’s always trying to balance hope and realism. But when he finds the report is based on studies done on mice, and the patient is asking if the new drug can help him or her, the conversation becomes a difficult one.

Prasad says the hyperbole used in cancer studies affects the way patients think about their disease. He’s got a theory that patients taking drugs which have had news reports labeling them “game changers” or “breakthroughs” are more likely to stay on the drugs if they start experiencing dangerous side effects.

Media bias

Prasad isn’t letting the media off the hook, by the way. One of his studies analyzed which of the thousands of research studies made it into newspapers and discovered a bias — papers choose stories where the claims are more sensational but the science not as strong, he says. Observational studies that purport to show that blueberries are good for you are pounced upon, while more rigorous randomized clinical trials are more often left unpublished.

“All the people who are players in the game contribute to this,” Prasad says.

But it’s the scientists and their backers who are looking to make make financial gain out of the misleading headlines, says Alan Cassels, a drug policy researcher with the School of Health Information Sciences at the University of Victoria. Cassels has studied newspaper coverage of new drugs, and he’s seen the stock prices of pharmaceutical companies jump immediately after releasing a report with exaggerated claims.

Genentech does it

He recalls attending a conference in Atlanta 10 years ago when Genentech released a report about the breast cancer drug Herceptin. The company originally released an abstract without real data, Cassels says, but that didn’t matter. Health journalists seized on the news and touted Herceptin as a breakthrough without digging deeper. Which was just fine with Genentech, Cassels says. Its stock price rose.

“The company loves this sort of hype,” Cassels says. “It created a buzz and gets the investors excited. A lot of the preliminary results that are exaggerated with superlatives, that’s the purpose ... to get investors on board.”

Or to get bought out, says OHSU’s Prasad. For some researchers, he says, the immediate goal isn’t necessarily to develop a breakthrough drug. It’s to get enough publicity so a large drug company wants a piece of what they are developing — and mainstream media headlines often are enough.

“I don’t even have to have a product that works,” Prasad says. “I just have to have a product you think works.”

Science skeptics

It’s that type of scientific tomfoolery that John Charles says he detests. Charles, president of the Portland-based Cascade Policy Institute, a conservative/libertarian think tank, considers himself a climate change skeptic. And he catches a lot of flak for that. But Charles’ reasons for doubting global warming come right back to Vinay Prasad’s research — he doesn’t trust scientists.

“There’s a huge amount of money and there are financial incentives for researchers to have public discussion cut off, to say, ‘We know all this. We must do something,’” Charles says.

In Charles’ view, what’s not being reported or studied is as important as what is, a perspective in line with Yale’s Krumholz. Krumholz is campaigning for what he calls “open science,” which would encourage scientists to more easily replicate and verify each others’ research. In medicine, studies that produce negative data on a drug or therapy often are never released, and even successful research can keep some data private.

Charles says the leap from Prasad’s study to his own beliefs is not so great. “I believe there is a connection,” he says. “If the concern is people don’t have as much faith in science, I can see why. When I see what is said in the debate (over climate change) and the way people like me are demonized for being skeptical, it makes me think, ‘Well, then you’re manipulating society for political purposes.’ Why wouldn’t that apply in fields I know no nothing about, like cancer research?”

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Truth or consequences? The uncertainty principle

Sure, modern-day medical researchers are hyping their work and betraying the public trust, says Harvard University professor David Jones. They’re just building on a long tradition, says Jones, an expert in the history of science.

“In the 19th century there was essentially zero trust for physicians and there wouldn’t even have been a category for scientific researchers,” Jones says.

Physicians were among the original snake oil salesmen, Jones says, touring the country and making money off of phony cures. In 1890, Robert Koch, who a few years earlier had discovered the cause of tuberculosis and a few year later won the Nobel Prize in medicine, announced the discovery of tuberculin, which he labeled a cure for the disease. Tuberculin turned out to be something of a scam.

Today, Jones says, the public is wise to at least some areas of medical research. “Nobody has trust at all in government nutritional recommendations or scientific research,” he says. And most people have developed a healthy skepticism regarding gene therapies after years of failed promises. But overall, Jones says, scientists and physicians still rank near the top when national trust surveys are conducted.

“Is there faith in science?” Jones asks. “It’s really item specific.”

But it’s important, says Jay Odenbaugh. Odenbaugh isn’t a physician or a scientist or even a media expert. He’s a philosopher, at Lewis & Clark College. The truth matters, he says, especially with science.

“When we distort and exaggerate and tell white lies, they come back to bite us,” he says.

Odenbaugh notes a recent study that looked at predictors for people’s view of climate change. Whether someone was a Republican or Democrat predicted if they believed in global warming better than how much science they knew.

In Odenbaugh’s view, that spells trouble because science is supposed to be the one place where we can assume objectivity. Viewpoints should depend on how much science you know.

“The big worry I have is when we politicize science or make emotional appeals that exaggerate, we erode the public’s trust in science as a neutral arbiter of the facts,” Odenbaugh says. “We think of science as just another commentary on public events.”

Science is supposed to be different, according to Odenbaugh. Uncertainty is a fundamental part of science and scientists should be trying to convey that to the public — not hyping potential breakthroughs

“One thing (scientists) should be doing more is communicating the uncertainty of results,” Odenbaugh says. “That also means the public has a responsibility to understand that science is uncertain.”

Clinical trials require trust in science

Skepticism of science could also be at least partially responsible for one of the major obstacles hindering medical advances — the recruitment of patients to participate in clinical trials.

An OHSU study a few years ago revealed that the university wastes about $1 million each year setting up trials that get canceled because of too few enrollees. Hundreds of trials are canceled each year at OHSU after no one, or one person, enrolls. Other medical centers report similar problems.

There are a number of reasons patients are reluctant to enroll in trials, according to experts. People are afraid of becoming research guinea pigs, or don’t want to invest the time. Often, poor communication between community physicians and the physicians heading clinical trials means patients don’t even know about trials for which they might be eligible.

But low recruitment is holding up critical research that could save lives in the future, researchers say. At OHSU, only about three to five of every 100 adult cancer patients participate in trials. Some researchers say a growing skepticism about science is one of the reasons.

“I think mistrust of science is definitely a factor that makes people wary of investigations,” says Dr. Eric Orwoll, an endocrinologist who oversees clinical research at OHSU. What isn’t so clear, Orwoll says, is how much of that skepticism stems from the hyperbole of research reports.

“The public is obviously hungry for answers and hungry for easy ways to prevent sickness and death. So grabbing on to the next best thing is kind of an expected, natural human phenomenon,” Orwoll says. “Scientists need to do a better job of communicating perspective and implications for their work.”

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