The Virtual Community:

We begin by discussing the use of the different modalities of the Internet and proceed into the concepts of the virtual communities. We then discuss the issue of judging what we can believe from the information derived from the Internet. Following these general discussions, we move to specific discussions ranging from pregnancy and childbirth to chronic illness like arthritis and cancer. This conclude with a discussion of the general paradigm shift in the level of responsibility in our healthcare system in the United States, driven in part by the enormous opportunities available via the Internet.

How Do I Use the Internet?

"Email" or electronic mail is the most frequently used portions of the Internet. Each person on the Internet has one or more unique email addresses to receive correspondence delivered from other Internet users in the form of digital files. These files can be plain text or they can come in the form of binary attachments (e.g. Excel spreadsheets, word processing files, images). A listserv is a specific mailing list formed to promote discussion around a specific topic. A listserv is a computer program running on a central computer with a given email address on the Internet. This program, called the listserv (or Majordomo as another brand), sends message from each subscribed member on the list to everyone else on the list. Everyone who subscribes to a specific mailing list received every message anyone sends to the list. Every subscriber can then respond. One of the advantages of a listserv is their asynchronous operation. Subscribers post messages to the listserv at their convenience. Other subscribers can read and respond (if they wish) to these message at their convenience. This asynchronous nature of operation of the listservs (and newsgroups) allows the subscriber to protect their time from interruptions. Most lists have a relatively narrow focus, such as breast cancer, asthma, etc. Most listserv services also archive all the messages so that newcomers can review past messages.

Internet news, commonly called Usenet news, is a network of newsgroups resembling a bulletin board or message center for people to converse by posting message on a newsgroup’s on virtually every topic including, computers, art, all the subsets of medicine, book publishing, aviation, and not surprisingly, sex. Most of the newsgroups publish a frequently asked questions (FAQ) list to keep down the number of repeat questions.

The World Wide Web, or "Web" for short, is the multimedia component of the Internet, making available libraries of information with text, graphics, photographs, audio and video. Information to be made available through the Internet is placed on a computer known as a Web server that is connected to the Internet. Each server has its own unique Internet address. There is virtually no limit to the amount or type of information that can be included on the site.

The key distinguishing feature of the Web is its interactivity. The interactive ability to connect documents is called hyperlinking. Click on a highlighted word in one document and you link to another document within the same service or perhaps on some other Web server elsewhere on the Internet. The user need not care where the information is located – they can focus on the information at hand. Most of the cancer sites throughout the world, for example, provide links to each other. Each document can be viewed on the computer monitor or printed out on paper.

The Internet Relay Chat (IRC) is a new way of conversing synchronously – in real time – with users either in a private or public forum on the Internet. While occurring via typed text, IRC is the closest analogy to the party-line telephone call. Indeed, the Internet Phone is digital voice version of the telephone network, only this network is the Internet. CUSeeMe is a fairly recent addition to synchronous communication and works by merging voice and slow video over the Internet, analogous to the picture-phone. CUSeeMe has the advantage of merging video and audio into a more comprehensive communication media – a forerunner of the future.

The Virtual Community

The "virtual community" combines the read-only behavior of the World Wide Web with the interactive parts of the Internet. People like to talk, and the ability to interact, to belong, whether within a closed group of professionals or completely publicly, is a powerful instrument for both participants and those who choose to merely listen (the lurkers). Interactivity started as email from one individual to another, grew to email from one individual to many individuals, and proceeded further into the world of mailing lists and newsgroups. Along the way, the methods of interactivity, such as real-time talk, chat, and video interaction (CuSeeMe) also grew. Each method has its own inherent benefits and flaws; what remains constant is the need to interact and communicate our findings. A central focus of a resource on medicine and the Internet would be the integration of interactivity and the many medical resources (e.g. libraries) now accessible on the Internet, as well as the reasons why this interactivity will make the Internet as commonplace as the telephone in our social and medical fabric.

The bounds of the "virtual community" are continually being expanded. Patients are seeking and finding clinical trials, for while the physician rarely has sufficient time to research the latest information on all of their patients – yet the patient has only one patient to research – themselves! This information is brought by the patient to the physician for review and discussion. Together the "Internet-savvy" patient and physician can work in partnership for their healthcare.

The concept of the patient providing medical information to the physician is controversial. The information contained on the Internet often does not undergo the peer review scrutiny received in medical journals and thus should be reviewed carefully. Indeed, patients, physicians and other well-intended individuals can make mistakes and extrapolate inappropriately from their own experiences. The strength of the virtual community is the easy give-and-take among the participants and the clarity in identifying the sources of posted information. The information may have been correct at one time, but has since replaced by more extensive research, alternate circumstances or newer methods of treatment.

The patient-physician relationship also changes to more equal footing when the patient shoulder’s their responsibility for their health and works in partnership with their healthcare team. In today’s society, this equal footing is often not the case. For patients experiencing major acute or chronic illness, the physician often ends up in a dominating position, dictating what the patient will do with their life. This unequal foot partially stems from the patient’s tendency to see the physician as an idealized and trusted parent, to whom the patient turns for healing, advice and the power to make everything better. This seriously distorted view contributes mightily to the malpractice boom in the U.S. It causes people to expect god-like powers from their physicians, who are then punished for not being able to heal all ills. It causes patients to become passive, putting themselves into the hands of all-knowing, all-seeing doctors, when what they should be doing is consulting them and then weighing what they are told against informed judgement.

With time, education on the part of the patient and their caregivers, and genuine caring, a true healing partnership between the patient and physician can develop. Like every other human relationship, this demands mutual respect, consideration and honesty. It depends on trust built over years of experience. While this relationship takes time and effort for both the patient and physician, ultimately both parties will benefit.

How Do You Know What to Believe?

Five Pointers For Determining Quality The Internet is evolving to supply an almost unlimited supply of healthcare information online. There is also a large quantity of inaccurate, misconstrued and misleading information online. Five specific guidelines for reviewing the quality of the information are as follows: Has the treatment been evaluated in clinical trials? Has it been reported in reputable (peer-reviewed) scientific journals? Do the practitioners of an approach claim that the medical community is trying to keep their cure from the public? Does the treatment have a secret formula that only a small group of practitioners can use? Are there any conspiracies or information that "cannot be revealed for public review"? Does the treatment rely on nutritional or diet therapy as its main focus? At this time, there is no known dietary cure for diseases like cancer, multiple sclerosis, AIDS, etc. Do those who endorse the treatment claim that it is harmless and painless and that it produces no unpleasant side effects? The treatments may be "completely natural" and "completely safe". All treatments have some risk associated with them and "natural" ingredients can have extremely powerful side-effects. Most treatments for cancer have profound on the body.

If you were talking to someone in your physician’s waiting room with a similar medical problem, would you elect to have exactly the same type of treatment? More likely, you would first consult your physician. You might get a second opinion or research the problem at the local medical library. You might seek out people who have already experienced your current situation and seek their counsel. You would ask them what experts they consulted and what treatments worked for them. Certainly before deciding what you would do, you would attempt to get sufficient information to make a knowledgeable decision.

This behavior of seeking fair and substantiated information translates well to the Internet world of listservs, newsgroups and web servers. Just as we asked if you would follow the suggestions you believe you overhead while riding a bus, would follow the experiences of one individual on the Internet? What is different online is the number of people and the variety of their opinions. Some of these people are experts in their field, while others have little experience. Some participants will have biases or other unseen agenda that may cloud or confuse the issue. Just because an online conversation is particularly heart-rendering or appears to be just the thing for you, doesn’t mean the protocol is appropriate or will result in the same outcome.

Since some areas of medicine do not have well accepted protocols for treating a disease, the experts will differ in their practice of medicine. One oncologist treating prostate cancer might feel surgery followed by radiation to be superior in most cases. Another leading prostate cancer expert might suggest watchful waiting or hormonal treatment. Which expert is right? Medically, it depends on many factors. In addition to the individual physician’s experience, other factors include the individual’s specific type and stage of cancer, their tumor response to therapy and their own choices for selecting a treatment based on the expected morbidity of the protocol. The physicians bias may show through by their specialty: a surgeon generally recommends a surgical approach, a radiation oncologist generally recommends using radiation, and a medical oncologist often will recommend a chemotherapy approach.

Once you have joined a newsgroup or listserv with information relevant to your concern, you should follow the group for awhile and identify the individuals who present logical and up-to-date referenced information. You might wish to contact the individuals by private e-mail and ask more detailed questions, both about material they have discussed publicly as well as ask about their background. Most will be happy to talk. If you can engage an ongoing discussion, you should ask for references to learn more about their ideas as well as to learn more about the acceptance of the method in the general medical field. Is there a plausible explanation for how the therapy might work? If the individual is well published, you can also explore the individual’s creditability as judged by their peers. In examining a protocol discussed online, you need to ask if a specific protocol could be reproduced by other individuals at other institutions with similar results? Does the thinking fit within the framework of accepted medical practice, perhaps at the forefront of research or reflects the approach of a specific style of medicine. Indeed, the way cancer is treated in France may be very different from an American approach or a Finnish approach. Is one country’s approach better than another?

If the individual online is a patient just like yourself, you can ask the very same questions that you would ask the expert: What are your sources of information? Are there references in peer-reviewed literature? What other institutions are following the same lines of thinking?

While following up discussion with private e-mail, it is worthwhile reexamining the forum where the original message appeared. Did your question spawn a conversation where there may be a disagreement by another expert? You never know when a seemly simple question may touch off a lively and informative debate, revealing information you never knew to ask! You will soon realize different healthcare practitioners with varying backgrounds and training will arrive at different conclusions on the same medical issue.

You can also learn about the creditability of the participants by watching how they respond to other postings. Do the same people always jump in and give the same answer regardless of the question asked? For example, do they always recommend treatment XX for a variety of conditions and stages? Are the patients always directed to join a particular group or subscribe to a particular newsletter or clinic? Is the advice the individual received from their physician always wrong in the eyes of these forum members? If the answers to these questions are predominately "yes", you might wonder if these members belonged to a special interest group with another agenda.

Three general areas of online communication which promote the spread of miscommunication include: anonymity, unbalanced contributions, and lack of accountability. The Internet currently does not have a reliable way of authenticating the identify and credentials of contributors. An individual can communicate with an alias name or pseudonyms, while others may use their full name but misrepresent themselves as a healthcare practitioner or patient with a similar problem.

Unbalanced contributions can be difficult to discern for someone just learning about a disease or treatment. If the participants of an online forum favor one approach or treatment over another, filling the message traffic with laudatory comments and a large following of supporting individuals, this may provide a highly slanted perspective that "everyone is doing it". Conversations might focus on the experimental treatments because the participants chiefly participate because they may be the small percentage who have failed conventional therapy. A first timer might conclude that everyone fails conventional treatment and the experimental approaches are the only way to go.

When you see a healthcare practitioner, follow their advice and are harmed, you usually have a recourse through the legal system and medical licensing boards. If following advice garnered from the Internet is harmful, your recourse is much more limited. It may be impossible to identify the individual responsible for the advice and hold them accountable. At this point, the malpractice laws have not been applied to electronic communication, especially where no monetary reimbursement occurs. At worst, you have no legal protection.

Alternatives to the conventional treatment abound. Commonly contained under the umbrella term of "alternate medicine", these approaches may include leading-edge scientists pushing the frontiers of medicine to salesmen of snake-oil pushing a potion that will cure whatever you are willing to pay.

Some of the former practitioners of "alternate medicine" pushed the envelope of medicine and were almost laughed out of the practice by the "peer reviewers". One example is the use of intrathecal methotrexate given to children with acute lymphoblastic leukemia where there was no evidence of spinal or CNS involvement. The criticism ranged from concern over exposing the child to treatment when there was no apparent indication of disease to must stronger accusations endangering a child’s life. Over time, it became apparent that intrathecal methotrexate given prophylactically resulted in a much lower relapse rate in pediatric acute lymphoblastic leukemia patients. Another example is the suggestion that many ulcers might be due to a bacteria named Heliobacter pylorii. John Marshall, the physician advancing this idea, took many years of ridicule and criticism from practitioners of conventional medicine before this idea became accepted and a simple antibiotic therapy provided a cure.

Other alternatives approaches to treating a disease might indeed be difficult to substantiate in the conventional literature. The miraculous cure for your problem might be snake oil. While there might be anecdotal information online in the form of testimonials, the responsibility for researching these treatments and deciding your course of action is up to you. If you are genuinely interested in an alternative treatment, take the time to investigate online and offline. Ask focused questions and attempt to get as many different and substantiated views as possible. Some participants of these forums will become interested an tap into research databases like Medline to provide as many facts as possible. However, don’t presume you will get the whole story online. If you want more information, correspond with individuals you feel are knowledgeable, creditable and unbiased by private e-mail. Question the credentials of anyone who makes a claim about a product or therapy. Ask the individual to substantiate any claims with additional information. Above all, be an intelligent consumer and assume nothing.

Pregnancy/Childbirth

The types of resources available to this audience will continue to blossom, driven both by young professionals willing to share their experiences, entrepeneurially minded individuals targeting a young audience who has grown up in a computer-literate world.

Arthritis

Cancer

The listservers and newsgroups pertaining to cancer went from three in 1994 to many in 1997 and show the explosion of growth in the 'virtual community' of on-line individuals interested in cancer. While there are some groups catering to healthcare professionals, most groups are a combination of patients, caregivers, interested parties and healthcare professionals. Physician participation in these groups grows, as they realize the mutual benefit to participation. Physicians interested in learning from their patients can watch the exchange of information and bring helpful comments and suggestions to the forum. Unlike a one-to-one encounter in the office or hospital bed, participating in a listserver or newsgroup is more like performing on-stage before and unseen audience. Millions of participants may be present, of which a few hundred may actively participate in the conversation. A list of the cancer oriented listservers and newsgroups can be found in the list actively maintained at the following URL: http://www.carelife.com/cancer_faq/cancer_faq.html

The Paradigm Shift

This problem of massive amounts of information is no different from a child looking at endless expanses of candy in a candy store, or an adult reviewing extensive magazine collections when seeking one or two issue to take on the plane. Some individuals will dive in indiscriminately, yielding to the plea: "I want to know it all". A portion of these individuals will immerse themselves so deeply in this information, they will practice a form of denial, never confronting the question of what will they do but becoming quite knowledgeable of treatment protocols, clinical trials, historical issues, etc. Another portion of this group will realize they are overwhelmed with information (i.e. information overload) and begin to distill knowledge from the information. Aided by clarifications and rankings provided by individuals from the virtual community, the knowledge will begin to transform this class of individuals into a well-informed partner in their healthcare.

With knowledge, the informed patient can come back to their healthcare provider and begin looking at important issues. One of the first issues is to develop a rapport with their healthcare professional. Some physicians are challenged by a patients who ask detailed questions and find the changing balance of knowledge to be unacceptable. These physicians are used to holding all the knowledge and decreeing to the patient what they decide is best for them. A confrontation with a patient who asks too many questions or who knows the current literature better than they, can undermine their ego and their sense of authority. Most understanding patients and physicians realize medicine is changing very quickly and new insight from a patient willing to learn and work in partnership is eagerly solicited! A patient taking an active part in their healthcare is usually more compliant with the protocol, since they understand the purpose, risks and potential benefits. Some patients may even provide a learning experience for their physician to gain a greater insight into treating the whole patient, and not just the diseased organ system.

The presence of the virtual community of individuals linked initially around common interest points of cancer, diabetes, multiple sclerosis, etc. is probably much more profound a paradigm shift than the Web. By nature, humans are social animals who like to exchange experiences, observations, and newly acquired information. Sharing the discovery of new clinical trial, rejoicing the continuing remission of a patient several years off chemotherapy, and mourning the loss of compatriot is something that touches the very sole of many of the online participants of the cancer virtual community. Healthcare professionals who participate in these virtual communities, either actively or merely as lurkers, often find many insights to enhance their practice of medicine. Often, they realize their office or bedside explanations are poorly understood. Watching the successful transfer of information online provides insight to do a better job next time in the office. The virtual community may not cure any particular disease, but it provides a place to socialize, learn, claw back the loneliness and help think about planning your life. After all, if you were diagnosed with a life-threatening disease completely new to you – where would you go? Who would you talk to? There probably is a place on the Internet to begin learning.

Summary

Note: This essay was extracted from Chapter Two of Patient Resources On the Internet: 1997 Guide For Health Care Professionals, L. Wingerson Ed. p. 63-75., 1997.