The Internet as Medical Adviser?

While the future of health care is heatedly debated in this presidential election year, something less obvious, but possibly much more important, is occurring behind the scenes.  

The energetic role of the Internet is beginning to supplant the priestly physician in the medical advisory role.     

The hierarchic medical structure of the past—the doctors as high priests dispensing their knowledge in oracular fashion—is rapidly being replaced by the noisier, but vastly more knowledgeable Web.     

As the mainstream infectious diseases of the past fade into history, people find themselves affected by less common diseases, by rarer side-effects, by ailments with no clear etiology. But this is almost equally true of their physicians who, increasingly specialized and dealing with a few thousand patients a year, are unlikely to encounter your particular malady.    

The Internet, in contrast, has made it possible for victims of “rare” conditions to find ways to communicate with one another. These sites today are generally “noisy” and a bit paranoid; many of their sponsors and members see rare contaminants or industrial pollutants causes for almost everything. Nonetheless, they are maturing. While some argue we need government oversight of this profusion of speakers, the solution to bad information is not censorship but rather better information.     

These sites are likely to evolve. Many may develop into disease attack centers with their own privacy and information acquisition specialists, their own statisticians, and physician advisers. Some may even produce their own foundations to directly fund research the Web group believes offers promise for their diseases. Eventually, we may see disease advisory services that, over time, could sort through larger databases made possible by patients voluntarily sharing information and lab results.     

It’s possible some people may find this new, decentralized world a bit confusing. No one, however, is likely to be more confused by it than the Food and Drug Administration. After all, such a Web-centric world will challenge FDA’s basic operating premise, which is centralized control over drug and device use. Such control is unlikely to survive the pressures of this “take charge” Web-world.     

And so the FDA faces a choice. It could impose more and more draconian controls on information flows and therapeutic use or choose an entirely different route—that of an information provider whose power stems not from government fiat, but from earned credibility.     

Under the latter route, the FDA could become simply another certification agency, offering advice; “Here’s what we think; make your own decision.” FDA wouldn’t be the only such organization, obviously; other groups—some commercial, others nonprofit—would also arise, discussing the pros and cons of rival disease Web sites. This already is happening in nutritional debates, pitting organic food advocates against others.     

People would increasingly select those that “worked.” In disease areas with weak understanding or few remedies, extreme ideas and theories undoubtedly would persist. But the very scope and scale of these “why not try it?” groups would expand society’s exploration efforts.     

The Internet offers great hope for a healthier tomorrow. It has emerged when the centralized health technology gateway role of the FDA is already crumbling. For those of us who believe the FDA’s regulatory rigidity has disserved the public, by delaying need therapies and raising the cost of new drugs and devices, this emergence comes not a moment too soon.