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The Web wasn't created, it grew. Like an organic jungle with a will of its own, it has grown and evolved based on individual, personal, and usually uncoordinated efforts from around the world. This simple fact is sometimes overlooked, but the consequences are quite visible. The Web looks like an enormous library where every page of every book is scattered on the floor in disarray, with new pages springing into existence every moment. From the perspective of a patient and caregiver looking for information, or from the perspective of a healthcare provider looking to publish information, it can be quite overwhelming.
Nevertheless, providers, patients, and caregivers are boldly going forward and using the Web. They're putting information online, trying to find healthcare information, and often wrestling with issues such as "I just did a search on AltaVista for AIDS information and got back 50,000 hits, now where do I start looking for accurate information?" and "I want to publish useful information about our medical center, but what exactly do patients want to find on the Web?"
Websites created by major tertiary care medical centers and small community hospitals are out there. Even some private practices and physician networks are out there, along with sites create by national and international patient support organizations. There has also been a huge increase this year in the number of healthcare Websites create by lay people, with patients and caregivers trying to help other patients and caregivers online. Where is it all going? What are the trends and successful strategies, both from a patient and a provider perspective, for "success" in using the Web? What are web-publishers putting on these websites, and what exactly are the patients and caregivers looking for?
To address the question "where is it all going," it is important to first ask "how did it all start?" In the beginning, it was primarily the medical centers and hospitals who had access to to Internet and the Web. Hard-wired to the global Internet, physicians and medical researchers were using the Internet largely for email and file transfers long before the Web was a glimmer in Tim Berners-Lee's eye (http://www.w3.org/Summary.html). When the Web was first popularized by the release of the Mosaic web browser from the NCSA (National Center for Supercomputing Applications in Urbana, Illinois), many "internet-aware" medical departments jumped on this opportunity to publish information online. Most often without any coordination with "upper management," medical center and hospital departments created websites full of department-specific information. Basically, the development of "online brochures" describing themselves.
This can be described as a "leaves without trees" type of growth. Individual clinical department websites sprouted without any "connection" to a central medical center website "trunk." Most of the initial entries in the HospitalWeb (http://neuro-www.mgh.harvard.edu/hospitalweb.nclk) list of hospitals on the web were for such websites, and I frequently received email that began with "My hospital has no main website, but my individual clincial department has lots of information online. Please list us!" Over time, departments within a hospital would cross-link to each other, creating networks of interlinking departments. Some of them were full of information, while others were embryonic in terms of content.
It is important to remember this independent, department-specific type of growth because it reflects why many medical center and hospital websites look the way they do today. Eventually, "upper management" noticed the importance of the web, and medical center websites became more centralized. Sites such as Massachusetts General Hospital (http://www.mgh.harvard.edu) evolved into a more centrally organized web "presence" and major healthcare corporations came online with very focused approaches, such as Columbia/HCA Healthcare Corporation (http://www.columbia.net), Tenet Healthcare Corporation (http://www.tenethealth.com), and Partners HealthCare (http://www.partners.org). Some hospitals started over from scratch, creating a common look-and-feel and a homogeneous level of content for each department. However, many of the hospitals and medical centers on the web today still retain uniqueness on a departmental level. This is simply because of the decentralized way in which websites tend to develop. Some departments continue to expend a great deal of effort and creativity to put information on the Web, while others choose not to or simply do not have the personnel or time resources. The best approach overall when developing a medical center or hospital website from the "top down" is to try and create a baseline of information about each department (it looks very bad when departments are conspicuously "missing"), yet provide the opportunity for individual departments to express their individuality and creativity if they so wish.
What have medical centers and hospitals put on their websites besides individual departmental information? Initially, they create collections of electronic brochures. Fundamental information that usually already exists in paper form. This provides a wonderful way of centralizing all of the various bits of paper that float around the central organization, such as hospital newsletters, information about special services, general patient-oriented healthcare information, maps and directions, personnel listings, etc. All of this information is of practical use to the patient, particularly if the information is updated on a regular basis. The next phase is usually Intranet-specific, typically information that is only accessible "internally" to the organization via the Web such as order forms and even patient record data (with the appropriate security measures, of course!). Finally, some organizations are experimenting with more interactive web concepts, such as admitting patients via the Web and creating discussion forums where patients can ask physicians medical questions.
All of these efforts are basically successful, if there is an ongoing committment to keeping them updated. Fundamentally, patients should be able to obtain useful information about the healthcare center or hospital without having to talk on the phone or have brochures mailed to them. They want information about the services offered, the details of treatments they will receive, and basic healthcare information. Most of all, patients enjoy and crave the feeling of "knowing what's going on" at the medical center or hospital. Armed with information before they physically arrive, they are greatly empowered. Healthcare institutions are generally overwhelming and often a bit faceless and impersonal to patients. By accessing information over the Web in the comfort of their own home, the "institutional" stigma of a hospital or medical center can be minimized for the patient and caregiver.
When the Internet virtually overnight became "a big deal," (remember the first time you saw a URL or email address on a roadside billboard?) there were suddenly thousands of patients and caregivers online, and all of them hungry for information about hospitals, medical research, and specifically their own illness/disorder/condition. Usually, they found precious little. Whatever information the medical centers and hospitals had put online was "it." However, they quickly discovered something even more interesting on the Internet. Namely, they found each other.
In the "real world," patients and caregivers have always found each other. People with similar illnesses/disorders meet in person or through telephone/mail contact, and often form "real world" patient support organizations. Some of them are informal and local, while others have evolved into national organizations such as the American Cancer Society (http://www.cancer.org), the American Heart Association (http://www.amhrt.org), and the National Tourette Syndrome Association (http://tsa.mgh.harvard.edu). In time, most of these various "real world" patient support organizations have set up websites. These websites are vital, since they are bastions of accurate medical information on the Web. Created by respected organizations with real scientific advisory boards made up of knowledgable physicians, the information on these websites is guaranteed to be valid. Patients and caregivers generally respect these sites, and it is essential to the wellbeing of patients and caregivers to get this information on the Web. The disease-specific literature for patients and physicians, information about local support group meetings, new research findings, online newsletters, and information on clinical trials that these and other patient support organizations have is precisely the information that patients and caregivers are looking for online.
Patients often begin using Internet tools such as listservs (automated email distribution lists) and Usenet newsgroups in their search for information. These tools provide direct communication with other patients and caregivers in similar circumstances, and they share stories, information, and often develop friendships. However, once they discover the Web, they quickly realize that they have the ability to create their own "spaces" on the Web. With a website, anyone can be a publisher, with an instantaneous and global distribution!
Many patients create personal homepages that include information about their disorders, links to other patient homepages, and ask for email feedback in an attempt to make contact with other people dealing with the same illness/disorder. Some of these websites develop into detailed personal accounts, such as the website "Prostate Cancer meets Protons, A Patient's Experiences." (http://www.cyber.org/protons/index.htm). Many of them then evolve into informal support groups, such as the "Circle of Friends With Arachnoiditis" (http://members.aol.com/Ddzevie/index.html). Ultimately, a few grow into carefully organized patient support websites that contain detailed information, such as "Reflex Sympathetic Dystrophy Online" (http://home.ptd.net/~paulbarb/rsdweb.htm) and "Gaucher Disease Information" (http://www.gaucherdisease.org). The amazing thing to notice is that the vast majority of these types of pages are started by patients who are directly suffering from these disorders or concerned caregivers with afflicted family members, not by large healthcare organizations or profit-seeking corporations. They are truly "labors of love" on the part of individuals who are personally dealing with illnesses.
Patients who are dealing with rare disorders often find great solace on the Web. Unable to find anyone in their local town in similar circumstances, they soon realize that even the most rare disorders affect many people when one looks at the human population on a global scale. Accessing the Web, one immediately recognizes that it is an ideal tool for global communication. I have personally heard of patients walking into clinics holding printouts of patient support websites about their rare disorders and exclaiming to their physician "look, I'm not the only person with my condition!" Occasionally, even the physician learns something, as no clinician is an expert on every possible illness.
Patients and caregivers seek information on the Web, and if they don't find it they often create their own islands of information. However, they also desire a sense of community. Patient support websites, whether they be "official" organizational ones or informal patient-created, allow them to "belong" to a group of people in similar circumstances. Interactive technologies such as web-based chat rooms and bulletin boards are increasingly popular. At Massachusetts General Hospital, I run Neurology chat rooms and bulletin boards (http://neuro-www.mgh.harvard.edu/forum, http://neuro-www3.mgh.harvard.edu/interaction$chat) that by far get the most "hits" of anything on my websites. Static information is useful, but interactivity greatly adds to the support experience. Particularly with chronic illness where there is no "cure" or instant solution, the simple ability to communicate with people in the same situation is, to them, priceless.
One unfortunate consequence to these global communities of patients and caregivers is something that can be referred to as the "Babel Fish Effect." In a wonderful science fiction novel by Douglas Adams called "The Hitchhiker's Guide to the Galaxy," he describes a unique creature called the Babel Fish; a small symbiotic organisim that, when inserted into the ear of any intelligent lifeform, acts as a "universal translator" and enables the "wearer" to understand any language in the Universe. At first glance, a wonderful idea, but Adams then goes on to explain that by effectively removing all barriers of communication, the Babel Fish has been the cause of more bloody wars and raging galactic conflicts than any other device known to humankind. The Web is a type of "Babel Fish," allowing people from every corner of the globe to voice their opinions. Patients and caregivers often find themselves embroiled in "flame wars" and other conflicts with people of different opinions, and simple tolerance of opposing viewpoints needs to be strongly encouraged.
In summary, patients look for valid information about their disorders and communication with other patients. Unfortunately, the web also allows "quacks" and people of questionable background to post whatever they like on the Web. Miracle cure and radical treatment information is everywhere online. Patients and caregivers must learn to always question the source of information on the Web, which is why it is vital for respected patient support organizations to publish their information as an effective way to dispel misleading and sometimes dangerous misinformation.
There are big fish and little fish in the ocean. The healthcare industry also has big fish and little fish. However, with the Web anyone can create a website and have an immediate "presence," regardless of their organization's size in the "real world." This has led many individual physicians and private practices to set up shop on the Web.
Is this successful? Do these physicians actually get patients "in the door," or does it merely provide something fun to add to one's business cards ("Here you go. My URL is on there too!")? Hard to say, but a similar model to observe would be small business on the Web. Generally they are not that successful unless the small business has something extremely unique and interesting to offer, and in that case a website can attract many new customers. Also, if the business can actually provide the ability to order their products on the web via credit card orders, there is a tangible new source of revenue. Healthcare is obviously not provided and delivered this way and there is always the critical question of validity. If a single, unknown physician offers a "unique" treatment, how can one be sure it is legitimate and safe, and how can one know if they physician is even a real physician? A trip to the American Medical Association's website (http://www.ama-assn.org) can allow patients to look up registered physicians, but what if they are not in the database? Individual physician and private practice websites are prime territory for quackery and medical fraud, and patients should be very careful in checking their validity.
In general, it is difficult to measure success with physician and private practice websites. These are fundamentally different than small business websites and, unless the site is offering a unique and difficult to find medical treatment, it will probably be "lost in the noise" of the larger medical centers websites. For a couple good examples of individual physician webistes, look at Dr. Dowden's (plastic surgeon, http://dr-dowden.com) and Dr. Avanessian's (dental surgeon, http://www.demon.co.uk/osmose/avahours.html). They provide basic information about services and office hours, with additional information to educate the potential patient. Do these websites get dozens of new patients "in the door?" Most likely not, but they do provide a convenient way to give their existing patients additional information about their services. Patients like to be informed, and this is probably the most successful aspect of such websites. The patients feel more "connected" to their physician, and the physician can create a friendlier physician-patient relationship by empowering the patient with useful information about treatments and medical procedures being offered. Future evolution of such sites could involve the creation of special "private areas" for patients, allowing them to communicate with their own physician in private bulletin-boards or realtime chats, at the same time allowing the physician to publish healthcare information online specifically tailored for their own patients. Physician and private practice websites may have limited success as "billboards" to attract new patients, but could ultimately be extremely successful in these more interactive and personalized aspects.
The Web is not just an organic jungle, it is a jungle growing out of control. In July 1995, there were approximately 20,000 websites. Two years later, that number is now around 1,500,000 websites and rising (http://www.netcraft.co.uk/Survey/). What are some key points to remember for providers, patients, and caregivers as they don their pith helmets and bravely stride into this wilderness?
Healthcare providers primarily need to continually update their websites with useful patient-oriented information. It sounds simple, but there first must be a dedicated effort to provide information on the Web. Many hospital and medical center websites are still developed by people working "in their spare time," and there needs to be an "official" organizational commitment (financial and/or personnel) to creating these resources. Soliciting and carefully reading email feedback from patients is critical, even more important than merely tracking "hits." A "hit" merely indicates that someone looked at a page, it doesn't tell you if they found what they were looking for. If you need to know what visitors to your site want, they are often more than happy to tell you if you simply ask! There should also be continued support for departments and individuals within the organization who want to experiment with new ideas on the Web. Creativity is priceless and should be encouraged. (Take a look at "A Window on my Mind: Poetry and Neurological Disorders" (http://neuro-www2.mgh.harvard.edu/mind/main.nclk), a site I developed to allow patients to express their experiences through creative writing on the Web. In this case, the opportunity for creativity is given to the patients themselves!)
Official patient support organizations need to work to publish as much valid healthcare information as possible on the Web. They must also realize that many "informal" personal patient support websites are springing up, and they should encourage them by providing web-links to them when appropriate. Healthcare providers should try to assist patient support organizations whenever possible, by offering technical or editorial assistance to those organizations that are struggling to create websites. Patient support organizations have wonderful content, something the Web desperately needs.
Patients and caregivers should continue to be encouraged to "set up shop" on the Web as a way of finding people dealing with similar disorders. They also need to be acutely aware of the varying levels of validity of medical information on the Web, and encouraged to always "check the source" before believing anything they read online. Personal privacy is also a concern, and patients must be aware that publishing their email addresses or putting personal information on a website is an open invitation for global search engines such as Altavista (http://altavista.digital.com) to index their pages and make them keyword searchable to the entire world. Try searching for your own name in Altavista, and you just might be surprised to see where you pop up!
What does the future hold? First, the Web is evolving beyond just static "billboards" of information. There is a serious growth of communities in the forms of web-based bulletin boards and realtime chat rooms. Patients and caregivers are also creating more informal communities simply by cross-linking personal pages across the Web. Second, physicians need to become more "Internet-aware." Many phsycians are still sadly oblivious to the Web, and they need to be shown how this technology can greatly benefit patients and physicians worldwide. Physicians' available time to learn new technologies such as web-browers and email is often sorely lacking, and the "give them the software and let 'em go" approach often frustrates them in the extreme. A good quote to remember is one by Antoine de Saint Exupery, who observes "If you want to build a ship, don't drum up people together to collect wood and don't assign them tasks and work, but rather teach them to long for the endless immensity of the sea." Get physicians excited about the Web, and they'll make time to learn how to use it.
In conclusion, the Web is a fantastic tool, with amazing possibilities and yet to be seen consequences for our society. However, it is not a brand new concept. Take a moment to read and reflect on an article by Vannevar Bush titled "As We May Think" (http://www.isg.sfu.ca/~duchier/misc/vbush/). Printed in the July 1945 issue of the Atlantic Monthly, it describes the creation of a "global web" of information accessible by everyone. The Web is much more than a slick new computer gadget. Rather, it is an evolution of humankind's desire for and method of communication. Sit back, relax, and continue to watch what grows in this fantastic jungle. Perhaps even try planting a few seeds of your own.
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John Lester works as a Computer Systems Specialist for the Department of Neurology at Massachusetts General Hospital (http://neuro-www.mgh.harvard.edu) and consults with the Mind-Brain-Behavior Initiative at Harvard University (http://mbb.harvard.edu) on collaborative technology. He has a degree in Biology and has worked in medical research at Massachusetts General Hospital. John has been involved in the development and ongoing evolution of web-based projects at Massachusetts General Hospital, as well as working with national patient support organizations to design and create their websites. In an effort to keep track the development of hospital websites he created HospitalWeb (http://neuro-www.mgh.harvard.edu/hospitalweb.nclk), a global index of hospital websites, in 1994 and continues to update it.
John communicates with patients and caregivers daily via email, online discussion forums and real-time chats, and frequently gives presentations at Healthcare and Technology conferences on topics involving enterprise-wide Internet strategies in a healthcare environment. He is particularly interested in healthcare-related information design and computer supported methods of helping patients and caregivers worldwide.