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Can Useful and Reliable Online Health Resources be Produced by 'Medically Unqualified' Persons?
"Medical Web sites created by medically unqualified individuals (i.e., persons who are not physicians) are unreliable and should, de facto, be considered medically unsound. Don't you agree?"
This is a question I'm often asked when I present a talk or workshop. I try to explain that it's not that simple. While you may be considerably less likely to find inaccurate, misleading, or self-serving information on most professional sites, this is by no means an ironclad quality guarantee. And when it comes to addressing the principal concerns of the patient in a helpful and useful way, professional sites often compare unfavorably to patient-produced sites. Some of the very best health sites are produced by just such 'medically unqualified' persons.
An interesting case in point: psychcentral.com, a highly-respected behavioral health site produced by psychologist John Grohol, one of the latest recipients of our Outstanding Achievement Award (see #5, below), provides an annotated list of the best mental health sites for layfolk. (A separate section lists recommended sites for professionals.) Of the 143 consumer sites listed, sixteen have received John's coveted "Grohol Top Site" Award.
Of these all-star sites, as far as I could determine after discussing them with John, 62.5% were produced by lay self-helpers, and 31.25% by mental health professionals. The remaining site was the work of media artists at the Xerox Palo Alto Research Center and didn't really fit into either category. A listing of all sixteen top-rated sites appears below-see article #2.
The patients who produce these sites certainly don't know everything a physician might know, but they don't need to. Good clinicians must have an in-depth working knowledge of the ills they see frequently and must know at least a little about hundreds of conditions they rarely or never see. Online self-helpers, on the other hand will typically know only about their own disease, but some will have an impressive and up-to-date knowledge of the best sources, centers, treatments, research, and specialists for this condition. A smart, motivated, and experienced self-helper with hemophilia, narcolepsy, hemochromatosis or any number of rare genetic conditions may well know more about current research and treatments for their disease than their own primary practitioner. And when it comes to aspects illness that some clinicians may consider secondary-e.g., practical coping tips and the psychological and social aspects of living with the condition-some experienced self-helpers can provide other patients with particularly helpful advice. The things clinicians know and the things self-helpers know can complement each other in some interesting and useful ways.
The take-home lesson: Being qualified to provide clinical care is neither a requirement nor a guarantee of proficiency in creating useful and effective online health resources. Quality standards developed for other media, while useful in many respects, do not provide a complete solution to quality concerns in the online world. New methods of online quality control are emerging. John's site, with its system of recommendations and awards, provides one notable example. Both health professionals and lay self-helpers are capable of creating reliable and useful sites.
When I interviewed online self-helper Samantha Scolamiero, founder of Brain Tumor Mailing List, for my book, Health Online, she summed it up quite nicely: "List members-layfolk and professionals alike-have moved beyond the old, obsolete mindset that holds that only certain 'qualified' medical professionals may create and disseminate medical information. We layfolk are learning that we are qualified through our experience, our knowledge and our concern. We now see that we are capable of contributions no professional can make and that by linking our efforts [with those of professionals] in a coordinated team, we can advance the well-being of all."
Published in The Ferguson Report, Number 5, July 1999
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