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METAFORIX MAIL Volume 1, Issue 44 June 13, 2001 Sites and insights for the Information Age
Thanks for reading! CONTENTS AT A GLANCE: ON
MY MIND: Health on the Web ON MY MIND [From the Editor] Online Medical Information: Good for Your Health? Almost 100 million American adults use the Internet to find health and medical information for themselves and their families. "Cyberchondriacs," as the Harris Poll calls these folks, make up 75% of wired adults.Medical professionals, healthcare industry organizations, consumer advocates, and others are increasingly interested in e-health, particularly in light of the new federal regulations governing medical records privacy. Whether their motives are financial, political, or altruistic, these groups are displaying a growing interest in how the public finds, interprets, and acts on medical information. According to a poll conducted in March, the average cyberchondriac seeks Web-based medical information about three times a month and is most likely to begin by entering the name of a disease, drug, or treatment into a search engine. The search engine returns dozens, hundreds, or thousands of results, just as it would for most other popular topics. And, just as with any other search, the user is confronted with a host of implicit questions about privacy, security, collection of personal data, and trustworthiness of the information posted on the resulting sites. But this is healthcare. So the quality and accuracy of the search results can have potentially life-altering consequences. Over the past five years, a number of organizations have developed ethical standards for web sites. They have issued guidelines meant to help consumers assess the quality and accuracy of medical information on the Net and to gauge how well sites protect their privacy and confidentiality. Both the practices of the e-health industry and the sophistication of cyberchondriacs have a long way to go. However, I can tell you from my work with the Internet Healthcare Coalition and its partners that progress is being made on both fronts, fueled by the interest of policymakers and the public in protecting consumer privacy on the Internet. I have also observed that faced with the choice between seeking medical information online from the comfort of their own homes, or making a trip to the library and possibly having to ask for the help of a librarian, most people choose the Net. So a recent study published in the Journal of the American Medical Association, "Health Information on the Internet", really piqued my interest. Conducted by the RAND corporation for the California Healthcare Foundation, the study attempted to assess whether online medical information is "sufficiently complete and accurate to support consumer decision making." Board-certified physicians, trained searchers, and trained abstractors were employed in a "structured review process" to rate the "accessibility, quality, coverage, and accuracy of key clinical elements" in online information in English and Spanish. The study focused on four common medical conditions: breast cancer, depression, obesity, and childhood asthma. The complex and elaborately designed study used a a predetermined set of criteria to assess medical information on the Web. The researchers concluded that online medical information in both English and Spanish has a number of serious deficiencies: - Information is difficult and inefficient to access by means of search engines and simple search terms. - Coverage of topics is "inconsistent," with information considered critical by the physicians frequently incomplete or missing. - High reading levels -- high school or above -- are required for comprehension of the information, even though the sites are intended for lay people. (In contrast, the New York Times is written at an eighth grade level.) To remedy these deficiencies, the authors suggest improved indexing methods, more complete coverage, removal of conflicting information, development of a standard rating system for medical sites, and simplification of the reading level. I do not challenge the deficiencies reported in the study. I fully agree that remedies like the ones suggested are desirable. I'm encouraged that various organizations are already working toward these kinds of improvements. Here's what boggles my mind: The study ignores other sources of medical information available (or, often, unavailable) to consumers as an alternative to the Internet. This lack of attention to other sources raises a number of questions: - How easy is it for consumers to locate medical information in a public library or a book store, particularly if issues of privacy make them reluctant to ask for assistance? For that matter, how easy is it to travel to a library and to arrive during hours when it is open? - How complete and consistent is the information provided by physicians to their patients, in the rushed and relatively impersonal environment of managed care? - Under a standardized review system governed by board-certified physicians, what would become of information on alternative and complementary treatments, newly developed drugs and procedures, and innovative approaches? - How does the reading level of Internet-based medical information compare to that of printed materials? In short, although online healthcare could stand a great deal of improvement, the researchers do not consider the possibility that the Internet is providing more accurate and timely information to more people than has ever before been available. Rather, there is an implicit caution to patients against seeking medical information on the Internet until it has attained a higher level of quality. While acknowledging the Internet's "potential to be a powerful resource for meeting some of the public's health information needs," the article concludes by recommending further research on "how the public's use of the Internet facilitates, compliments, or complicates patient-physician communication and on how patients and health professionals can make better use of this resource." In my view, it is disingenuous of the authors to focus their recommendations entirely on measures that can be accomplished with no public input whatsoever, such as web site improvements, rating systems, and further research. Why not also recommend immediate efforts to educate the public about how to judge the quality of online health information? I can't avoid the possibility that this blatant omission stems from the antiquated, paternalistic attitude that patients are subordinates, rather than partners, in their own healthcare. "Internet-positive patients" who present their doctors with pounds of offprints that can't possibly be digested during a brief office consultation undoubtedly pose a problem. But it's condescending and unrealistic to tell people, in effect, to forget about the genuine benefits of e-health until the professionals give them the okay. Now that we have rigorous, highly-publicized documentation of what's wrong with online health information, let's not use it to justify keeping patients only as well informed as their individual physicians want them to be. Instead, let's use this major research study as an opportunity to press for widespread community education on how the Internet, right now, with all its imperfections, can make positive contributions to the public's health.
Cordially, Lois C.
Ambash, Editor
INFORMATICON You're No Dummy! "Attention, non-techies: don't be embarrassed by your problems with computers. If you have a question, send it to me at mossberg@wsj.com, and I may select it to be answered here in Mossberg's Mailbox. Just remember: you're not a 'dummy,' no matter what those computer books claim. The real dummies are the people who, though technically expert, couldn't design hardware and software that's usable by normal consumers if their lives depended upon it."Walter S. Mossberg, computer columnist, The Wall Street Journal
MEDIA Shipman dispatched most of his victims during afternoon housecalls by injecting them with the painkiller diamorphine. Most were elderly women, whose deaths Shipman later certified as due to "natural causes." Had he not falsified the will of one victim, he might never have been arrested in 1998, and the government might never have conducted the statistical analysis that revealed the scope of Shipman's crimes. The story is still available on the Times web site, accompanied by a multimedia feature that expands on the story with photos and video. What I find most fascinating about the feature is the "Reporter's Notebook," in which Eichenwald discusses how he became aware of the Shipman case and what he sees as its true significance. Originally, Shipman was tried and convicted of fifteen murders, prosectors having decided that the legal system could not handle a trial in keeping with the true magnitude of the crime. Eichenwald learned of the case when the government released its statistical analysis. He was struck most forcefully by the fact that Shipman had committed his crimes "In Plain Sight," as the multimedia feature is called. Eichenwald's report, he says, is fundamentally a story about how Shipman's "spree" and the government's response "fractured" the faith of the British public in both its doctors and its system of justice. Listen to Eichenwald's comments, read his story, and see what you think. To access the report, go to: www.nytimes.com/2001/05/13/world/13KILL.html
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CYBERSPEAK Snooping by Any Other Name . . . Dataveillance, as defined by Paul McFedries, is "the ability to monitor a person's activities by studying the data trail created by actions such as credit card purchases, cell phone calls, and Internet use." Coined in 1988 by an Australian professor of computer science, the word is "an inelegant blend of data and surveillance."The term may be inelegant, but McFedries web sites are anything but. This definition comes from The Word Spy, a site devoted to "lexpionage: the sleuthing of new words and of old words used in new ways." At the URL I've given, you'll find more on dataveillance and links to other privacy-related terms. It's also a good place to begin exploring the rest of McFedries sites, all of which deal with computers, Web design, words, or all three.
Time Out of Mind Calendars through the Ages offers historical, astronomical, and etymological facts about the world's major calendars. The site consists mostly of text, with a few attractive images. I think it drew my attention because I'm always hoping to find a way to expand the number of days in a week and hours in a day.No luck on that score, but I did discover that Calendars through the Ages belongs to a family of sites called WebExhibits, which highlights online "illustrated educational exhibits" on a wide variety of subjects. WebExhibits rates exhibits (from three stars to none) and welcomes suggestions for new additions to the list. To explore WebExhibits' other resources, go to: http://webexhibits.org/
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Volume 1, Issue 43 June 7, 2001
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