Nerdstream: A collection of interviews with science crusaders

Update: One of the founders of PubPeer, neuroscientist Brandon Stell, just revealed his identity in the journal Nature and at Retraction Watch. The Q&A below was penned by Stell and other PubPeer co-founders, who have chosen to remain anonymous.

When people talk about the flaws in the scientific process, they often raise the problem of peer review.

There are a few things we know for sure will make us healthy: exercise, don’t smoke, eat a variety of whole foods — but not too much — and watch your alcohol intake and sun exposure. Yet every day, we are bombarded with messages from celebrity culture about things we must do to be healthier and more beautiful. They usually involve gimmicks like juicing and detoxing, a new “miracle supplement,” shake, or body-firming exercise. Some advice is more extreme — such as Gwyneth Paltrow’s suggestion that women steam their vaginas.

And sometimes, even when celebrities don’t tell us what to do, we follow them anyway — going under the knife to achieve Kim Kardashian’s bum or seeking out advice about a double mastectomy because Angelina Jolie had the operation.

But this advice actually contradicts what the best available evidence tells us. When it comes to cancer, more health care isn’t necessarily better. That’s the difficult message Dr. Gilbert Welch, author of Less Medicine, More Health and a Dartmouth physician, has been trying to get through for years.

Over a decade ago, Welch started looking into the effects of mass screening programs for cancer that have emerged around the globe. These programs take otherwise healthy people and subject them to tests to find out whether they have lumps and bumps that may be malignant. This is different from using ultrasounds or other technologies to diagnose people at risk of a disease or who have symptoms that require investigation. It’s the type of preemptive screening that so many celebrities advocate.

Welch found something surprising: in many cases, screening wasn’t actually helping people or saving lives. The programs were turning healthy people into cancer patients unnecessarily, leading them to needless treatment and hospitalization, creating clubs of “cancer survivors” who actually would have lived even if their cancers were left untouched.

By the 1950s, Big Tobacco knew smoking caused cancer. By the 1960s, the companies knew nicotine was addictive and that smoking could lead to heart disease. But three decades later, tobacco executives stood up before Congress and, under oath, denied the facts.

The same story has played out with other major scientific issues of our time, from climate change to the health harms of various chemicals. As scientists build consensus, industry tries to obscure their findings outside the ivory tower, turning non-debates into ginned-up controversies.

A new documentary, Merchants of Doubt, shows exactly how for-profit players covertly shape popular thinking about the biggest science questions of the day. The movie helps explain that the fight about climate change — and smoking, and environmental chemicals — is actually about political ideology and questions of how people should live and govern themselves.

A couple of years ago, former Obama and Bush officials estimated that only 1 percent of government spending is backed by any evidence at all. 1 percent. Perhaps unsurprisingly, then, evaluations of government-sponsored school and work programs have found that some three-quarters of those have no effect.

Over the last six years, a group of evidence-based nerds in the White House have been trying to change the status quo by way of a quiet evidence-based revolution. By only funding programs — from home visits to low-income families, to pregnancy prevention and K-12 education — that have high-quality studies demonstrating they work, the White House has been trying to push government officials in a more science-minded direction.

If you haven’t been reading Dr. Ben Goldacre, you should. He is arguably one of the most interesting and important science writers working today. At a time when health journalism is clogged up with self-serving peddlers of bogus diets and magic miracle cures, Goldacre, a physician and former Guardian columnist, has made it his mission to “skewer the enemies of reason” and bring research and evidence to bear on the big — and small — health questions of our time.

Over the years, Goldacre has taken on everyone from sloppy journalists to pharmaceutical executives, vitamin proprietors, and disingenuous academics. He has illuminated the evidence, and lack thereof, behind detox footbaths, homeopathy, and ear candling. And, with every debunking, he has left behind lessons in the scientific method, epidemiology, and evidence-based medicine. His writing has changed policy and informed the public at a time when few in the media stand up for science in health.

In 2010, on a nerdish whim, Ivan Oransky — a medical editor and physician — co-founded the website Retraction Watch with his journalist friend, Adam Marcus. The plan was simple: they’d start tracking all the retractions that were announced at scientific journals.

At the time, retractions were not exactly well promoted and no one else was methodically shining a light on research that turned out to be bogus. Retraction notices quietly languished in databases that no one read, making fraudulent or erroneous studies difficult to spot.

This is a very scary fact about modern medicine: if researchers don’t like the results they get from clinical trials, they can simply hide them — and none of us, the people who use the various drugs and devices under testing, will ever know.

Results that might show a drug doesn’t work or has serious side effects can, under our current clinical trials system, never see the light of day. Studies have shown that we have a skewed picture of the evidence that underlies much of clinical practice because there’s no centralized system for disseminating information about clinical trials results, whether positive, negative, or inconclusive.

“Imagine your 10-year-old daughter was in the town’s annual gymnastics competition,” says Deborah Zarin, director of ClinicalTrials.gov. “She has been practicing for months. In the finals, she was up against the daughter of the judge. At the end of the competition, the judge goes into a back office, comes out and declares his daughter the winner. There is no transparency about what the criteria were, and how the decision was made.”

For over a decade, Dr. Zarin, a Harvard-trained MD, has been trying to change that. She has earned a reputation as a crusader for open data, quietly presiding over the world’s largest database of clinical trials, ClinicalTrials.gov. Established in 2000, and operated by the NIH, it now holds information from more than 180,000 studies in humans in over 180 countries.

The idea underlying ClinicalTrials.gov’s creation was a public record about which trials are going on as soon as they are started. That should, in theory, make it more difficult for researchers to hide trials that didn’t produce the results they wanted. The database also makes it easier for patients to know about studies being done, should they require access to an experimental drug, for example.

But there was still a problem: ClinicalTrials.gov, up until now, hasn’t required researchers to report the outcomes of their trials — only the fact they’re happening. Under a new plan, proposed by Health and Human Services last month, researchers who run clinical trials would be made to not only register them on the database within three weeks of signing up the first study participant, but also report a summary of results — no matter the outcome. This will vastly expand the trove of data on the site.

I spoke to Dr. Zarin earlier this week about why these changes are happening, why they matter, and what it means for medicine.

JB: Your registry has done more than just provide information to patients about what trials are being conducted; it has advanced the clinical trials transparency agenda globally. What does this mean for how medicine is practiced in this country?

DZ: When doctors make decisions about a possible treatment, you want them to base that decision on the best-available evidence. The only way to know whether a drug would help you is to rely on the published studies. But several years back, researchers started documenting that — for many drugs and other interventions — only some of the studies conducted were published.

Number of studies registered to ClinicalTrials.gov over time