Gaps in unbiased medical information can be painful

This NY Times essay by Jerry Avorn titled "The Sting of Ignorance" presents the problem of information gaps in healthcare that instead of re-interpreting what he wrote I'm just printing his essay in its entirety below.

LATE on a summer afternoon not long ago, the water at Lucy Vincent Beach on Martha’s Vineyard was warm, and the toxic jellyfish that had plagued bathers weeks earlier had floated out to sea. Body-surfing in on my last wave, I suddenly felt as if someone had whacked my leg with a lead pipe studded with nails. On the 1-to-10 pain scale we use with patients, I would have called it a 14. When I rubbed the area with my hand, my whole palm stung. Apparently those toxic jellyfish hadn’t all left.

A crowd of passers-by gathered to offer tips from the tainted well of conventional wisdom. “Use ammonia.” “Rub in some meat tenderizer.” “Apply vinegar.”

Soon a small army of bronzed youths in official-looking tank tops arrived carrying enormous medical kits. One poured sterile water on the sting area; another rubbed it with an ice pack. A third worked an alcohol-based anesthetic into the wound. Each treatment made the pain worse.

Eventually our group attracted the attention of a nurse strolling down the beach. A year-round Vineyard resident, she had seen her share of vacation-related medical emergencies. “You’ve removed the tentacle, haven’t you?” she asked matter-of-factly. No one, including the medical-professor patient, had thought of this. She took a piece of gauze and pulled off a slimy, transparent string laced with neurotoxins. It had continued to send those toxins into my leg for the first 20 minutes of my care. They are particularly activated, I would later learn, by distilled water, by mechanical pressure (as from an ice pack), and by alcohol-based topical medicines — all the treatments I had so earnestly been given.

Now the pain began to abate. I drove home and reached for three of the most useful medicines I know: aspirin, acetaminophen (Tylenol) and the Internet. As the first two began to take effect, the third revealed a study published in February in The Medical Journal of Australia.

The clever Aussies (whose beaches are also infested by toxic jellyfish) had conducted a clinical trial that randomly assigned sting victims to application of hot water (to deactivate the poison) or icepacks. The trial was stopped halfway through because the hot-water group did so much better that it would have been unethical to continue. I didn’t discover this through any proprietary medical search engines. I used Google and Wikipedia, and it took about two minutes.

Coincidentally, much of my work is about defining which medications work best for which conditions, and how to close the gap between that knowledge and the care patients typically receive. My research group constantly comes across effective treatments that are underused, and poor-choice drugs that are widely prescribed. Even when good clinical trial data on a regimen or medicine exist, no coherent system ensures that the message gets out to doctors and patients. As a result, many treatment choices are driven by habit, old information or glitzy promotional campaigns.

My aquatic encounter was a small example of what millions of patients confront daily, in much more serious circumstances. The nation faces two yawning medical information gaps. First, we need more studies comparing treatments to each other, as that simple Australian trial did. Drug companies don’t usually do such tests, preferring to evaluate their new products by comparing them to placebos. (The drugs usually win.)

The National Institutes of Health, facing its first real-dollar budget cut in generations, isn’t likely to expand its mandate in this direction. But what about the insurers, private and governmental, who pay such a large share of the nation’s $220 billion annual drug bill? They could support such studies with the rounding error of their annual budgets — and then save billions if the findings were put into practice.

The second problem is that much of the knowledge we do have is not communicated to the people who need it. Drug companies are adept at barraging doctors and patients with slick messages touting their most expensive products — even if they are no better than older, more affordable standbys. Maybe if Merck held the patent on hot water, my well-intentioned beach squad would have known all about the Australian study. But that’s a poor way to ensure that patients receive the right care.

We need an unbiased, efficient system to get the word out to practitioners on what works best. My colleagues and I have done pro bono research aimed at developing such an approach. Because the drug industry is so adept at changing beliefs and practices, we’ve taken a few leaves from its book.

In a program financed by the Commonwealth of Pennsylvania, called the Independent Drug Information Service, we scan the medical literature for the best evidence on how to treat a given medical problem (like high cholesterol or arthritis), boil it down into user-friendly packets of information, and then send nurses and pharmacists out to doctors’ offices to recommend optimal treatments. The information we provide is unbiased and noncommercial, and we don’t offer free trips to golf resorts. The resulting savings from more cost-effective prescribing could more than cover the costs of programs like this.

The approach has been adopted in several Canadian provinces, and Australia runs a continent-sized program to update its primary care doctors (though I don’t know if it addresses jellyfish injuries). The government covers expenses, but scientific content is determined by nonprofit professional organizations. Their recommendations are transmitted in person by “outreach educators,” in concise newsletters, and electronically to doctors, health workers and patients.

If the Vineyard beach first responders had known of the latest research results, they wouldn’t have done everything they could to transfer toxin from the jellyfish tentacle to my leg. All of us need access to current, noncommercial medical information. Besides helping to contain our runaway medication expenditures, programs of this kind could prevent a lot of needless suffering — by patients and doctors alike.

(I bolded certain lines to emphasize the main points.)