
Getting Health and Medical Information on the Web
by Guest Blogger, 3/12/2002
One market segment of the Web that has lured audiences, advertisers, and investors is the health and medical information services sector. It's no wonder: In 1999, over 25 million American consumers, physicians, and health care providers were expected to have gone to the Web for all manner of health and medical information, according to the research group Cyber Dialogue. Some of the more popular sites included WebMD and Medscape.
These sites, in particular, represent large-scale collaborations between health care providers, news organizations, corporate and academic medical research communities, and nonprofit health advocacy organizations to increase both consumer and practitioner access to medical news and information via the Internet. These services operate under a portal model that seeks to build a community of subscribers that actually generates the content, which in turn attracts eyeballs, advertisers, and more subscribers. WebMD and The Health Network do this by providing a variety of discussion areas and online surveys. Medscape goes one step further by providing a mechanism for the actual dissemination of research and findings.
WebMD is an Internet-based healthcare network targeting physicians, hospitals, insurers, and consumers for services like access to insurance verification and referrals. It is distinctive, given its focus on services for insurers and hospitals. WebMD also offers a range of medical information from media sources, experts, reference sources, and practitioners. WebMD merged with Healtheon in 1999, and also acquired former competitor The Health Network.
The Health Network was the marriage of a 17 million subscriber-household health cable television network (owned by Rupert Murdoch's News Corporation/FOX Entertainment Group) and a commercial website, with each partner mirroring the other's content. THN was a consumer focused resource of both basic health and wellness reference information drawn from a variety of media and expert sources, as well as original content from the cable channel. Among THN's big claim to fame was the first live webcasting of both a single-baby and a triplet birth on the Internet.
Since its inception, WebMD has been able to secure big marketing arrangements and co-branding partnerships with the Cable News Network (CNN) and the Lycos web network. WebMD agreed to a two-year partnership with CBS to be the exclusive provider of health information for CBS's SportsLine website. SportsLine will, in turn, be the sole merchant of golf equipment on the WebMD site. Medscape gears its services towards information on clinical medicine. Most of Its more than 1 million registered subscribers are physicians and health-care professionals. Medscape is currently set to launch a consumer health website later this year in partnership with CBS. The arrangement will include news content from CBS and Medscape-generated online reports.
Online health resources provide a range of services for built-in audiences who are evaluating the quality of information available based, in part, upon the trust and credibility of the partners behind the site, especially the nonprofits involved. An increasing number of medical researchers, nonprofit health societies, health care organizations, and clinicians are going online to generate ideas, test theories, conduct research, and gather and share their findings. For any of this work to have validity within the broader scientific and medical communities, however, it still has to be published in an established peer-reviewed print publication or journal. This means an author must submit their findings in the form of an article that then gets reviewed by a range of peer experts in that particular topic. If the article is accepted, it is printed anywhere from a few weeks to many months later.
Critics of the peer-review process argue that the journals are more interested in hoarding information in order to manipulate the publicity attendant with major research, than with providing useful information to their subscribers and the interested public in a timely manner. To address this concern, Medscape launched the first Internet-based peer-reviewed general medical journal, Medscape General Medicine (MGM), in 1999. MGM seeks to provide an expedited peer review mechanism, which would post the latest research on the Web as soon as it is reviewed.
Dr. Lawrence Altman's 8/24/99 New York Times article on medical journals outlines some of the pressures print journals are facing as well. Journals are now increasingly responsible for shaping the nature of the not-for-profit medical societies that own them, often pitting business and editorial considerations against one another. Both JAMA and NEJM, for example, removed their head editors in 1999, in part, because of changing economic considerations. The introduction of online journals to the mix makes the marketplace for research even more competitive.
The editor-in-chief of Medscape's journal, in fact, is the former head of the prestigious Journal of the American Medical Association (JAMA). The firepower is expected to help boost Medscape's credibility and prestige, resources that do not come easy when you are competing with more than 25,000 established print medical and scientific journals like the 116 year-old JAMA or the 187 year-old New England Journal of Medicine (NEJM). Todd Woody's 4/30/99 piece on Medscape for The Industry Standard points out that journals like JAMA and NEJM don't accept previously published materials and articles, and do not expedite their review processes unless a matter of public health is involved, or a rival publication is about to publish a similar article.
Medscape General Medicine is hoping that by offering an ongoing schedule of peer review and publication, more information will be made available more quickly. The other expectation is that because Medscape General Medicine is free, unlike JAMA and NEJM, more people will be able to participate as peer reviewers and subscribers, which will help open up the range of perspectives offered. A number of print journals do have websites, but the number of online users do not yet surpass print readership. Only 15% of NEJM's 200,000 subscribers, for example, utilize the Web version of the journal. Also, access to online journals is usually closed to the membership of the medical societies that sponsor them.
The critics of Medscape's journal have been pretty vocal. There are the basic objections to a commercial entity providing a free service that undercuts or supplants, rather than supplements the existing efforts of established nonprofit journals. There is also concern about the possible erosion of the available base of subscribers and author submissions. Keep in mind, that JAMA and NEJM, according to Altman, may each be earning as much as $20 million dollars annually from their subscriber base and drug company advertisements. Moreover, they are in a position to reject many more articles than they receive. A large number of smaller journals, which compete for research findings to publish, take advantage of work that may not be considered by larger journals. There has also been a significantly larger body of public policy material that has made its way into the pages of medical journals.
There are also worries that a "fast-track" method of peer-review, however efficient, might also compromise scientific integrity and accuracy. The traditional review process, while possibly slow, is thought to ensure confidence in the data provided online. Medscape is not the only effort that has come under fire for trying to alter the traditional method of peer review by publishing research directly on the Web.
Back in May of this year, the director of the National Institutes of Health circulated a proposal for an online journal called "E-biomed". E-biomed would provide users access to all the latest biomedical research reports drawn from clinical studies and basic scientific research. Rather than owning the site, NIH would provide the basic startup resources, with the responsibility for editorial and review guidelines falling to the user base (mostly researchers). Potential authors could either request a peer review of their article by editors of a specific journal, and if accepted, it would be published on the E-biomed site before it is printed in the specific journal. If the work were rejected, authors could seek review by another journal, or submit directly to E-biomed for consideration by two reviewers picked by the E-biomed governing board.
As with Medscape, there is concern about an online publication serving as the first point of publication for medical research that might not otherwise pass a more, formal rigorous peer review process. Even more scrutiny, some argue, should be placed on research that is generated for the benefit of practitioners, especially in a field like clinical medicine.
The crux of the concern lies with the nature of research journals themselves. Print journals devoted to basic sciences and laboratory research are utilized mostly by working researchers and scientists who are already knowledgeable of a particular subject. The expectation is that this readership can figure out what all the data means for itself. In this instance, an online journal that provides up to the minute data and research findings might be beneficial, as it would give researchers more information to work with more efficiently. Clinical medical information, however, is trickier for the folks who use that information practice medicine. This is the type of information that health care providers use to help their patients. Because the disciplines involved draw upon many different fields of expertise, clinical information relies upon editorial context to help make the information useful and digestible for busy practitioners. This is why the stakes are so high for information that directly impacts the consumers of health care resources online.
Medscape and E-biomed critics argue that data, even bad data, can be tested and proved (or disproved) in a controlled environment, usually before the consumer is affected. If clinical information, however, is released to the public instantaneously, without any context or expert commentary, the results can be potentially harmful, especially if the information contains bad data. This concern may not be that far-flung.
Sandra Boodman writes in her 8/10/99 Washington Post article about how websites with medical and health information in some instances contain inaccurate and outdated information, or data not reviewed by scientists. Boodman describes how a group of researchers from the University of Michigan Comprehensive Cancer Center looked at some 400 web sites for information about a rare form of cancer called the Ewing sarcoma. The researchers picked this particular cancer because it was assumed that given its relatively rare occurrence (around 250 Americans annually, mostly young adults, are diagnosed with it), the amount of information available on the Web would be relatively limited.
The researchers looked through some 27,000 web pages found by using four different spellings of the cancer entered into seven of the leading search engines. The results were compared with a leading oncology textbook. Their findings, published in the 8/1/99 issue of Cancer, the journal of the American Cancer Society found that 6% of the sites contained bad data, and many other sites had bad editorial context for the data.
One of the statistics the study used to evaluate the quality of information available online was the survival rate for those with Ewing sarcoma. Most oncologists predict a survival rate of 70-75% for this cancer; the study found, however, that sites ranged in their estimates from 5% to 85%. The Encyclopedia Britannica, by comparison, cites a 95% mortality rate. The study also found that many sites did not distinguish between appropriate and inappropriate treatments for the sarcoma, or did not list the original source of information from which the treatment was derived.
The issue is more pronounced when talking about health and medical resources, regardless of the consumer-- doctor or patient. More patients today are looking up information for themselves to better prepare for consultations with physicians. If physicians must spend more time addressing bad information, it can provide a drain on resources. If there is also huge variance with medical or scientific fact or commonly accepted knowledge, the results might lead consumers to not seek treatment if the numbers or outlook is bleak-even if the data is wrong.
The concern is this: any consumer of information would seek out a respected online information source of information with the reasonable expectation that the information provided is accurate. Instant access to large amount of information and data can attract a lot of attention, especially if a solid brand name is attached to that source. Depending upon the brand name or reputation, people will take the information an online resource provides as fact, with little question. If, however, there is no way to check or review content, or provide some mechanism through which corrections or updates can be provided, then bad data can get passed along and cited as fact.
Ryan Turner
NPT Project
OMB Watch
Resource
Cyber Dialogue
WebMD
Medscape
"Inside Medical Journals, a Rising Quest for Profits" New York Times 8/24/99Dr. Lawrence Altman
Journal of the American Medical Association (JAMA)
New England Journal of Medicine (NEJM)
The Industry Standard, 4/30/99Todd Woody
E-biomed
"Medical Web Sites Can Steer You Wrong"Washington Post, 8/10/99Sandra Boodman
Cancer, 8/1/99American Cancer Society [subscribers only]
Other Resources
American Cancer Society
American Heart Association
American Medical Association
Centers for Disease Control and Prevention
Consumer Gateway
Department of Health and Human Services
Food and Drug Administration
Healthfinder
National Cancer Institute
National Institutes of Health
National Institute for Allergies and Infectious Diseases
National Library of Medicine
