Cyberspace: The Final Frontier
The Internet as an Untapped Medium of Medical Web-Education
A Physicians's Perspective
Kirsti A. Dyer, MD, MS, MCBT
"Cyberspace: The Final Frontier...."
With over 100 million users and projections of 250 million ‘on-line’ by the year 2000, the Internet is a reality of daily life. With more than 15,000 websites devoted to health care , up from 10,000 cited in March , the Internet is also a reality of daily medicine. It is estimated that 3 million people use the Internet for medical information, and nearly 40% of all Internet users searching for medical information on the Internet. With certain populations this percentage may be even higher.  A recent Harris Interactive poll of chronically ill people discovered that 59 % used on-line commercial health care sites for medical information. 
"These are the voyages of physicians in the 21st century."
While many physicians were in residency training programs or just trying to keep up with the expanding medical knowledge base, the explosion of computer usage since 1994 has been exponential. Many physicians have been slow to embrace this field or incorporate computers into their daily patient practice for a variety of reasons. One is time. It is difficult enough just keeping up with the changes in the practice of medicine, let alone finding the time to become computer literate. Another is financial. Many practices’ expenditures are governed by groups, who don't want to spend the resources to get their physicians on-line. A significant factor is fear—of the unknown, of the technology, and most of all of appearing to be less than an expert in a given area, e.g. being ignorant. Several of my colleagues admit to suffering from computer-phobia, being apprehensive of turning a computer on, thinking it might blow up, or worse, crash during use. Many physicians lack the basic typing skills needed for operating a computer keyboard. Others use the computer for personal reasons—personal e-mail, playing games, or watching stocks, but not for medical ones. This phobia of computers is pervasive within the medical field. I believe the main obstacle is getting physicians to admit a knowledge deficiency in an area they have never had the time to study. Once this is realized, there are many courses and resources available to get physicians "up to speed" and navigating the Internet. Fortunately, those in the upcoming generation of physicians have grown up with computers and used them in training. Consequently the next generation is much more comfortable with computers, have embraced the new technology and want to use it in their practices. The dilemma is how to get the middle and older generations of physicians, those of us over 35, to become computer literate, without insulting our intelligence.
The benefits to computer and Internet literacy are numerous: access to on-line CME credits, journal articles, and medical searches previously only available in libraries. Another benefit is the ability of the Internet to "link" and connect other physicians together. With the new technology physicians in different countries with expertise in a particular area can share medical information and resources without having to travel. Physicians can work together, ‘chatting’ via e-mail, and collaborate on papers and projects.
"Your continuing mission: to explore strange new worlds...."
Combining medicine, psychiatry, poetry, prose and images to create a unique web experience, the website I designed, Journey of Hearts http://www.journeyofhearts.org is just one example of how this new technology can being used to create a "new on-line world," which is reaching grieving people around the world. Few medical websites can claim "Visit the website and call me in the morning," but the Journey of Hearts website deals with a unique subject matter—grief and loss. Often what is needed is the virtual hand-holding in the middle of the night. This website utilizes counseling, self-assessment and educational materials applying them in an Internet setting, to help people through the grief process. By providing web-education about the overlooked areas of grief and loss, many patients, families, friends, co-workers, and survivors have a better understanding of the grief process. By understanding more of a subject, one is able to overcome fear of the unknown; Knowledge also returns a sense of control over what often seems like a random occurrence. We have received numerous "thanks" from visitors around the world who have found the site in the middle of the night. One colleague describes Journey of Hearts as "a life saver on the Internet; it provides a way to keep someone afloat on troubled waters, until help arrives, or they paddle to the shore." With over 81,000 visitors since April 1998, the Journey of Hearts website has been able to help far more people in coping with the grief response, in far less time, than a strictly office-based practice could have done.
With the potential for combining different subject areas and different artistic modalities into a web-education tool, unlike that which is available in print or in the television media, the Internet is an untapped medium that can be used to enhance patient education. The innovative use of the Internet for education has been utilized by many backers of health sites—pharmaceuticals, alternative practitioners, health care organizations and medical entrepreneurs. I anticipate the medical Internet will be used by a growing number of physicians as a way of reaching their patients, once they know how.
"...to seek out new life..."
It is relatively easy to create a cyber-presence or hang up a cyber-shingle. Several medical websites provide free templated web pages for physicians who want to create a cookie-cutter website. In exchange for free advertising for the medical organizations or physician-driven websites and a few minutes of typing, the physician can create an instant Internet presence, with a URL that can be added to a business card. For the more adventurous creating a website requires an Internet Service Provider (ISP), registering a domain name (URL), the capabilities of creating or coding webpages, and the means of transmitting files to the ISP. Many physicians are exploring this "new life" on the Internet by putting up their own site, often for the simple reason of providing answers to basic patient questions.
All of this patient access to medical knowledge is changing the doctor-patient knowledge balance. The Internet can be utilized to positively reinforce the patient education already started in the office, but it is also impacting how physicians practice with this mega-access to health information. We are starting to see a new type of patient—the Internet savvy one—who brings in 10-12 downloaded pages with the "latest" information, having already self diagnosed their condition, and wanting the latest treatment being touted on the Internet for a particular disease. Frequently, the information patients are accessing is from an unknown web resource of questionable reliability or motives. Articles are surfacing in the Medical Journals with advice for managing the "Internet-Positive Patients" and tips for communicating with patients who think they know more than you do.  One of the best methods for dealing with Internet savvy patients is by becoming an Internet savvy physician, further underscoring the need for physicians to get on-line.
Having so much available medical information comes with a price—time, reliability, authenticity and accuracy. It is difficult to ascertain the credibility, the motives, and the sponsorship of websites. Several of the disease specific websites and some of the most heavily trafficked health sites are sponsored by or are supported by advertising from pharmaceutical companies or managed care organizations. Many of the health websites are profit motivated, instead of patient care motivated—desiring to sell a product or bias towards a particular medication, rather than promoting accurate information, or educating patients. On-line health data, particularly commercially-based, is not monitored for quality, yet these are the sites where our patients are getting their information. There is no existing central government agency that monitors the quality of health sites on the Internet. If the government attempts to stifle non-defamatory or inaccurate information over the Internet, this may violate the first amendment—free speech.  The current situation relies on self regulation of medical information, which sites may or may not choose to do.
There have been several attempts by different organizations, journals, medical entrepreneurs and individuals to determine some measure of credibility for the Medical Information on the Internet. One of the earliest on-line organizations, the Health on the Net Foundation, http://www.hon.ch, established in 1996, created a set of principles—A Code of Ethics, as a way of bringing some credibility to health and medical websites, by asking that they conform to and follow a list of guiding principles. There is no price to subscribe to the HON Code of Conduct. In 1997 the Journal of the American Medical Association proposed guidelines for medical websites  promoting that medical Internet sites should provide the same documentation as printed text—authorship, relevant copyrights, ownership disclosures, date the content was created and any updates to the material. Since then many other medical web entrepreneur sites have established their own code of ethics for websites to comply with and obtain their "seal," or "certification." Several business web entrepreneurs will, for a price, validate a website as being one you can trust or believe in, by encouraging their licensees to supply information on privacy, disclosure, and informed consent. Yet there are growing doubts of the ability of these non-profit initiatives to protect consumers' privacy or enforce their privacy rules.  One has to wonder, "Is a paid-for 'license' any more valid or any more valuable than subscribing to an on-line medical code of ethics, especially if there is no enforcement?"
In October out of a growing demand from users of the medical Internet for reliable health care information combined with the increasing recent media attention to this issue and a number of calls to action by industry leaders, two organizations are responding. Much of the recent uproar has centered around several health-information sites that have not entirely disclosed their relationship with advertisers. There is a growing movement to create clear medical ethical Internet standards that clearly separate medical information from advertising. The Internet Healthcare Coalition (IHC) http://www.ihc.net announced they will host a high-level working summit in Washington D.C. on February 1-2, 2000. The IHC is a non-profit organization dedicated to quality healthcare information on the Internet. At the summit they plan to formulate a set international standards and ethical principles that can become commonly accepted and applied to health-related Web sites. "Ethical conduct does not happen by accident," said Dr. Helga Rippen, chair of the Internet Healthcare Coalition. "It requires leadership, vision, and integrity." It is the hope of the IHC that by the end of 2000, a set of principles will exist that can help to guide the health Internet community. In addition the American Medical Association, along with six other national physician associations, announced the formation of a new for-profit company, with plans for launching a high quality health information and communication site on the Internet. They hope to bring their collective credibility to the creation of this super health site.  Notably absent from the organization are those organizations most associated with primary care, the Family Practitioners, and the Internists. One wishes this venture luck, for the sake of patients, but wonders how well these organizations will make the leap into Cyberspace, and how their advertising and medical ethics policies will significantly differ from the other 15,000 current health sites. According to a recent article in the Industry Standard, "The medical societies are betting that the pedigree or their for-profit offspring will overcome better-funded competitors like Drkoop.com [commercial site] and InteliHealth.com [John’s Hopkins Health Information site]."  Perhaps the early track record of the AMA puts this organization in an unique position to be looking at leading this movement. Much of the early activity of the AMA was devoted to combating the quackery in practice before and after the turn of the century. Notably in 1849 the AMA established a board to analyze quack remedies and nostrums and to enlighten the public in regard to the nature and danger of such remedies,  and in 1913 establishes a "Propaganda Department" to gather and disseminate information concerning health fraud and quackery. 
There is a growing, perhaps unspoken concern that the health field has returned to where we were at the beginning of this century, when crassly commercial businessmen, quacks and charlatans were promoting themselves as first-rate health care providers and peddling their products and potions as "safe," "effective," "natural," and "health promoting." As physicians we owe it to our patients to protect them from those who might take advantage of them. We need expose those practices, practitioners and "snake oil peddlers," now flooding the Internet who may be detrimental to our patients. At the same time, we need to be able to determine what web resources might be beneficial.
With so much confusion and disorder surrounding medical Internet sites, physicians need to educate their patients on what to look for when visiting a website, whether the source is credible, and if they can believe the information from that site. Only by providing some structured critical analysis of the myriad of health websites, will our patients be able to find the reliable information they can use.
"...and boldly go..."
The Internet is changing the Doctor Patient relationship and the paradigm under which medicine has been practiced for centuries; one based on the hypothesis that in order to treat, the physician must see and touch to diagnose, treat and connect with the patient. This paradigm has been shifting with consultations occurring between Doctor and Patient over the phone or e-mail, and the emerging field of Telemedicine, where a patient is ‘examined’ remotely. We are in an era where often the best consultant for a case may be just a modem call away and Internet savvy patients often confess more to their on-line support group or net pals than they tell their physician about their medical condition. The medical profession must start to reconsider, and redefine what we envision as the traditional Doctor-Patient relationship, and explore how this relationship might extend to an on-line doctor-patient one.
The Internet has the potential to be an excellent adjunctive resource for patient web-education. It also has the unfortunate potential of exposing the public to an unprecedented, unregulated volume of misleading information on health and illness. The goal for medical professionals in the next millennium will be to help sway the balance towards good, reliable medical web-information. With Internet technology as a new medium with tremendous potential for patient and physician education and information exchange, as we enter the New Millennium let us explore and seek out the emerging challenges, and go:
no one has gone before."
 Internet Train is rolling: But no one knows where it's going. American Medical News. October 4, 1999: 42: 23-24.
 Brundtland GH. Health for the 21st Century. Speech delivered for the World Economic Forum January 30, 1999. Available at: http://www.who.int/inf-dg/speeches/english/davos_30011999.htm Accessed March 7, 1999.
 Ward B. "Internet-Positive Patients" Driving You Crazy? Find out How to Get Online and Cope. Internet Medicine 4 (7):1,6 1999. Available at: http://www.medscape.com/LWW/1999/v04.n07/im0404.01.html Accessed October 25, 1999.
 Woody T. AMA Jumps Into Online Biz. The Industry Standard. October 28, 1999. Available at: http://www.industrystandard.net/articles/display/0,1449,7280,00.html?home.tf Accessed October 28, 1999.
 Morgan, P. How to Communicate with Patients Who (Think They) Know More Than You Do. Medical Practice Communicator 5(3):3 1998 Available at: http://www.medscape.com/HMI/MPCommunicator/1998/v05.n03/mpc0503.04.html Accessed October, 26, 1999.
 Hodge JG, Gostin LO, Jacobson, PD. Legal Issues Concerning Electronic Health Information: Privacy, Quality, and Liability. JAMA. 1999;282:1466-1471. Available at http://jama.ama-assn.org/issues/v282n15/full/jlm80037.html. Accessed October 31, 1999.
 Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet. JAMA. 1997:277:1244-1245. With the redesign of JAMA, information prior to January 1999 is not yet available on this site. Previously available at: http://www.ama-assn.org/sci-pub/journals/archive/jama/vol_277/no_15/ed7016x.htm Accessed October 29, 1998.
 Lemos R. Can you Trust TRUSTe? from ZDNet News, November 2, 1999. Accessed November 3, 1999. Available at: http://www.zdnet.com/zdnn/stories/news/0,4586,2387000,00.html?chkpt=zdhpnews01
We considered registering the CyberMed Catalyst, Medical Internet Forum and the Alliance of Internet Professionals as being ‘trust-worthy’ sites, but at a price of $300/year to do so, realized that this equaled our cost to host these sites, and was not within our operating shoe-string budget. Instead we opted to create our own Privacy Statement. To quote from Prof. Kingsfield of "Paper Chase" fame, "You have to earning it." We will have to earn our trust the old-fashioned way, by example, rather than paying for a "seal of approval," of questionable validity and worth.
 News Release. AMA, Six Other Physician Groups launch Internet "Supersite" with Health Information Patients can trust. October 28, 1999 Available at: http://www.ama-assn.org/ad-com/releases/1999/991028.htm. Accessed October 30, 1999.
 AMA website, About AMA: Who We Are Our Illustrious History. Highlights in AMA History 1847 to 1899. Available at: http://www.ama-assn.org/about/1847_99.htm Accessed October, 31, 1999.
 AMA website, About AMA:Who We Are Our Illustrious History. Highlights in AMA Highlights in AMA History 1900 to 1939 Available at: AMA http://www.ama-assn.org/about/1900_39.htm Accessed October, 31, 1999.
 Dyer, K, Thompson C. Lessons & Insights learned from Creating a Unique Integrative Medical Website for Web-education. Presented at MEDNET '99 The World Congress for the Internet and Medicine. Available at: http://www.journeyofhearts.org/mednet99/end.htm.
This article originally appeared in the November 1, 1999 issue of The CyberMed Catalyst: Journal of the Alliance of Medical
Internet Professionals. (JAMIP). © 1999 Kirsti A. Dyer, MD, MS, BCBT, Cole D. Thompson, MA & JAMIP. At that time the links were found to be working.
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