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Online Medical Information: Good for Your Health? by Lois C. Ambash
You are probably a Cyberchondriac, yourself. HarrisInteractive's polling data show that as of last November, 106 million American adults -- 83% of those online and 52% of all adults -- qualified as Cyberchondriacs, and the numbers continue to grow. This trend is certain to affect the relationships between healthcare consumers -- sometimes referred to as "patients" -- and their physicians, pharmacists, HMOs, and other businesses and organizations that provide health-related services. The Internet allows highly targeted communications from insurers motivated to cut costs and drug companies motivated to increase sales. These organizations have already begun using the Internet to build relationships with individual customers. Thus far, doctors have generally been loath to loathe to communicate with their patients by e-mail. Their reluctance is due, at least in part, to issues of confidentiality, legal liability, and compensation. Efforts to resolve these issues are underway -- and not a moment too soon. HarrisInteractive points out that if physicians do nothing to meet the challenge of well-funded relationship marketing by pharmaceutical companies and HMOs, they will lose "the battle for the hearts and minds of Cyberchondriacs" by default. Cyberchondria’s implications transcend the bottom line. 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 May 23/30 issue of 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 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 alternatives 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 good deal of improvement, the researchers ignore 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. © 2001 Lois C. Ambash, Metaforix Incorporated. All rights reserved. Also read: Lois's Six Laws of Internet Research Home | True
Stories Copyright 2001 2Young2Retire.com, All Rights Reserved
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Lois C. Ambash
is President and Chief Infomaven of Metaforix Incorporated, whose mission is to help
individuals and organizations respond to the challenges of the Information Age. A guiding
principle of her work is that people and organizations can discover within themselves
solutions to the challenges they face, if they ask the right kinds of questions. Lois
holds a Ph.D. in American Culture and Writing from The Union Institute, along with
Master’s degrees in Public Policy and Library/Information Science and a Bachelor's
degree in English. Before she founded Metaforix, Lois spent over 20 years in public higher
education, where she created and managed a variety of educational programs geared
specifically for adult learners. She is a member of the Board of Directors of the Internet
Healthcare Coalition and an advisory board member of MyDoc.com, "the first
fully-integrated, 24-hour online healthcare service," and speaks frequently at
professional conferences and meetings around the country. Metaforix Mail is Lois’s
free weekly e-letter on information- and Internet-related topics. To subscribe, e-mail: