Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web
edited by P. F. Anderson and Nancy J. Allee
While the preface gives you a rough overview of what we tried to do, and how, we would be seriously remiss if we did not acknowledge that there are ethical and philosophical concerns relating to this task. First of all, as in any effort of this sort, there is the question of how any author or authors can possibly attempt to address such a seemingly impossible task, no matter how well intentioned and hard working they might be. Next, while Internet searching for health information is one of the largest areas of growth on the Net, and the provision of what is called e-Health has become highly commercialized, this doesn't necessarily please everyone. As long as the Internet has existed, there have been concerns about how to determine the accuracy, quality, and ethical focus of any given bit of e-Health information found by the search engines. Those concerns have not grown less over the years, despite the enormous efforts of many fine and dedicated people to address them. Since we know that it is not possible to resolve these concerns, why, you might ask, would we feel compelled to make the attempt? A richer discussion of the background of the concerns and issues seems appropriate.
From the beginning of the Internet, people have taken the opportunity to reclaim the intentions present at the historical foundations of publishing and copyright. That is, first, to say what they believed was important, whether or not anyone else agreed with them, documenting their ownership of the ideas. Second, to offer a chance for dialog between the people who were providers of the information or opinions and the people who were consumers of the same. With respect to health information, perhaps more than in any other area, there has been a great deal of debate about whether or not this has been a good thing. One concern was that the most readily accessible information was, at least early on, likely to be the least medically sound. The U.S. government, state and other national governments, various health care organizations, academic medical centers, health care corporations, and individual health care providers rapidly addressed this issue by making available evaluated and reviewed consumer health information, and offering a variety of options for patients seeking health information.
Despite this, health care providers continue to hold strong concerns about the health information available on the Internet in general, and have had strong reactions to the Internet-based information brought to them by their patients. The debate has ranged across both extremes, and has found its way into the day-to-day life of most health care providers. We've heard of practitioners who expressed strong gratitude for the information brought to them by an informed patient, and proceeded to act on the information and incorporate it into the treatment plan. We've heard of practitioners who, in front of the patient, took the printout from the pharmaceutical company's Web site regarding the prescribed medication and its side effects and put it in the waste receptacle, solely because it was from the Internet, disregarding the source or quality of the information.
It is because of these vastly different reactions that we want to help the patient not only to find his or her own information but also to determine if the information is quality information. Then, how to present the information you have found to your health care provider so that they will also know you have found "good stuff"? Ideally, we would hope that knowing how to use the Internet effectively would help build trust in the clinician-patient relationship; a trust, which, according to other sources, seems to be on shaky ground.
Professional codes define professional responsibilities with ever-greater accuracy. Huge efforts also go into ensuring trustworthy performance. . . .The efforts to prevent abuse of trust are gigantic, relentless and expensive; and inevitably their results are always less than perfect. Have these countermeasures begun to restore trust, or just to reduce suspicion? . . . Patients, it is said, no longer trust doctors . . . and in particular no longer trust hospitals or hospital consultants. "Loss of trust" is in short a cliché of our times.1
Fundamentally, The MLA Encyclopedic Guide is about personal empowerment in one of the most intimate aspects of our personal lives. It is also about a belief that both access to quality information and shared health decision making nurture the trust that comes from a sense of how much personal control and power is possible in a situation that is, by definition, unpredictable and filled with personal risk. You may have seen or heard one of the many radio and television advertisements from the National Health Council with their very apt slogan: "It's your health. You call the shots."2 In some ways this is an expression of the peculiarly American perspective on the inalienable rights and responsibilities of the individual.
John Adams once said, "Liberty cannot be preserved without a general knowledge among the people. . . . The preservation of the means of knowledge among the lowest ranks is of more importance to the public than all the property of all the rich men."3 The concepts of liberty and pursuit of happiness are inextricably interwoven with the personal, and there is little more personal than our health. What John Adams says connects those core issues with access to the necessary knowledge to make informed decisions and applies to all general topics. Health information certainly cannot be excluded. With the availability of Internet access in public libraries throughout the United States, the vision of universal access to needed information has come closer than at any time in our country's history. David Brin has widely discussed the broader implications of this general concept for empowering our contemporary society.
What has worked -- the foundation of our liberties -- has always been openness and candor. Especially the ability to force the mighty out in the open where we can hold them accountable. All three of the greatest human inventions -- science, democracy and free markets -- depend on open information flows.4
The expression of similar concepts is not rare on the Internet. Indeed, free flow of almost any kind of information seems to be at the conceptual foundation of the Web, a kind of operating assumption. It is not difficult to find this assumption expressed in terms perhaps less noble and more targeted toward a kind of information guerilla warfare.
Information wants to be free
Access to computers and anything else which may teach you something about how the world works should be unlimited and total.
Always yield to the hands-on imperative.
Do It Yourself.
Fight the Power.
Feed the noise back into the system.
Surf the edge.5
It is this conceptual foundation, underlying both American democracy and the Internet, that has created the environment in which many health care consumers feel not just allowed but obligated to share information about their health issues and concerns. This is the same environment making possible a free dialog between health care professionals and health care consumers such as has never before occurred. Now, the type of patient called a "Clinic Cynic"6 by the Path Institute can freely flourish, and even be respected and integrated into the generation and review of health information. It seems fitting, given the immediacy and intimacy of health to the human condition and quality of each person's life, that health information has become one of the foremost arenas for resolving the variety of issues besetting this new information environment. A few of these issues, which will be discussed later in the book, include accessibility of the information, privacy, standards, ethics, and guidelines for how the information is provided. Across all of these lies an unstated assumption of the right of the individual to choose to make his or her own informed health decisions, a concept also sometimes referred to as "informed consent."
The concept of informed consent is somewhat at odds with a much older concept in the medical literature, that being that the physician or health care provider knows best. Another way of stating this second concept, which has resulted in substantial discussion and concern both within and without the professional health care community, is the phrase "noncompliant patient." In short, this is basically a patient not doing what he or she was told to do by the health care provider. Charles Atkins, a physician who admits to being a noncompliant patient himself, in his brilliant editorial for the American Medical Association, gives some richer insights into the complexity of the concept.
As I approach my 40s, I can just imagine what my response would be to a physician trying to push a drug that would make me fat, bald and stupid. Yet if I were to be recommended such a pill . . . and then neglected to take it, I would be branded as noncompliant. . . . So I start with Stedman's Medical Dictionary to ascertain whether this is even a word. I find compliance: "The consistency and accuracy with which a patient follows the regimen prescribed by a physician or other health professional. Adherence." Still, I don't care for the sound of noncompliance -- as if not following the doctor's advice is a sign of moral turpitude. The term hides a bigger issue: "Why is this person not doing what the doctor said?"7
The concept of noncompliance is so ingrained into the past of our medical system as to be represented in the medical dictionaries, as above. It can be traced back into medical history to the Prayer of Maimonides, including references to concern over the quality and source of information the patient acquires.
Grant that my patients have confidence in me and my art and follow my directions and my counsel. Remove from their midst all charlatans and the whole host of officious relatives and know-all nurses, cruel people who arrogantly frustrate the wisest purposes of our art and often lead Thy creatures to their death.8
Despite, or perhaps because of, this long history, there does seem to a recent trend in the medical community to question the concept and its validity, Atkins being far from the first. Warner Slack, M.D. discusses noncompliance at length in several places of his book, Cybermedicine, reiterating the following conclusion:
I believe that patients who want to should be encouraged to make their own clinical decisions . . . and that noncompliance should be regarded simply as disagreement with the doctor. Our data indicate that patients who elect to make their own medical decisions will be faithful to them, that they will do what they tell themselves to do.9
In Slack's discussions of noncompliance, he is explicitly confronting the issue of patients' looking for information on the Internet to help them make health decisions. Our personal belief is that it is neither realistic nor ethical to attempt to control or proscribe access to health information. Nor is it realistic or ethical to legislate or prescribe what health care consumers do with health information once they find it.
In The MLA Encyclopedic Guide, our struggle has been to balance this belief with an equally urgent concern for those health care consumers who do not find the best available information. This is through no fault of their own but simply the nature of the Internet and Internet search engines; however, it heightens the possibility of their making health decisions based on this less than ideal information, placing their own health or quality of living at unnecessary risk.
Anish Chandra points out the dangers of making decisions with flawed information: "A confused health care consumer is a dangerous patient. He or she may seek inappropriate alternative treatments, which may have adverse health effects."10 This confusion comes in part from the sheer enormous variety of information available on the Web, in part, perhaps, from the consumer's lacking the context to know what information it should be possible to find, and, in part, from struggling with what questions to ask and how to ask them. No one even tries to pretend, for example, that all information on the Internet is of equal quality, accuracy, or currency.
It can be a challenge even for a health care professional to decide which information is preferable for a given situation. "Overall, the results suggest that there is a fair degree of disagreement between medical experts when they are asked to rate medically-related postings from the Internet."11 If there is a lack of consensus among health care providers as to what constitutes quality information, then what is the role or expertise of the health care consumer in this search, discovery, and decision making process? The obvious -- they are the truest and only experts on their own bodies, its quirks and eccentricities, and how the disease process expresses itself in their personal experience. As Melvin Konner, M.D., Ph.D., puts it: "There is no life without illness, no day without healing. What we can do best is what doctors and medicine cannot do for us at all: develop an active sense of the balance of health and illness within ourselves, and develop tactics for tilting that balance more and more against illness."12
It is that process of using information in "tilting the balance" with which we hope to assist. That is the personal empowerment of which we spoke earlier in this section. We hope to help health care consumers better understand what kinds of questions can be asked and answered with Web resources, the scope and variety of information available, offer some of the tools and strategies that can help with finding the information. The very nature of information on the Internet means that we cannot guarantee that the information on a recommended site will remain the same, or that the site itself will continue to exist. In every section of the book, we make no attempt to be comprehensive, since to be comprehensive is neither a feasible nor logical effort. Instead, we focus on examples of types of information and types of Web sites one may reasonably expect to find. Remember, many wonderful and excellent sites could not be included in these books. This is just a beginning place. The emphasis of the work is on the strategies and techniques used to locate those representative sites.
Then, once the questions have been asked and searched, and hopefully good quality information found, we hope that you will use this information in collaboration with your health care provider as partners in making the best possible health decisions for you. We have seen no one who expresses this better than Tom Flemming in his disclaimer for his site "Health Care Information Resources," which, not coincidentally, resides on a server named Tiohnhe, a Mohawk name meaning "That which gives life."
Health Care Information Resources makes information about health and disease accessible in the belief that the informed consumer is a more satisfied consumer of healthcare. This service does not offer advice about health or healthcare and cannot substitute for a healthcare practitioner. Only personal contact with the qualified healthcare practitioner of your choice -- who knows your health history, who can examine you, and who can bring expertise and experience to bear on your situation -- can yield advice about how you ought to handle any of the information you obtain from sources accessed through this service. Decisions regarding your healthcare should always involve the assistance of a trusted healthcare practitioner.13
2. National Health Council. "It's Your Health. You Call the Shots." Retrieved February 3, 2004, from http://www.nationalhealthcouncil.org/. [Return to text.]
3. Adams, John. "Dissertation on the Canon and Federal Law." 1765. American Letters, Speeches and Documents On-Line Library. Retrieved February 3, 2004, from http://www.ashbrook.org/library/18/adams/canonlaw.html. [Return to text.]
4. Brin, David. "The Value -- and Empowerment -- of Common Citizens in an Age of Danger." The Futurist. 2001. Retrieved February 20, 2004, from http://www.futurist.com/portal/future_trends/david_brin_empowerment.htm. [Return to text.]
5. Branwyn, Gareth. "Cyberpunk Cut and Paste Manifesto: A 'C' Word Sampler." Retrieved February 3, 2004 from http://www.streettech.com/bcp/BCPgraf/Manifestos/Cut&Paste.html. [Return to text.]
6. PATH Institute. Understanding Consumer Health Behavior. Retrieved February 21, 2004, from http://www.pathinstitute.com/Understanding.htm. [Return to text.]
7. Atkins, Charles. "Patients Usually Have Reasons for Being Noncompliant." [Opinion columns: Commentary] American Medical News (April 9, 2001) 44, no. 14. Retrieved February 28, 2004, from http://www.ama-assn.org/amednews/2001/04/09/edca0409.htm. [Return to text.]
8. Maimonides. "Daily Prayer of a Physician." [Attributed variously to Moses Maimonides, 12th century C.E., or to Marcus Herz, 1793.] Retrieved February 3, 2004, from http://www.medterms.com/script/main/art.asp?articlekey=4247&rd=1. [Return to text.]
9. Slack, Warner V. Cybermedicine. Rev. ed. San Francisco: Jossey-Bass, (c) 2001, p. 42. [Return to text.]
10. Chandra, Anish. "Potential Influences of the Web on Health Care Patients and Professionals." Health Care on the Internet 5, no. 3 (2001): 5967. [Return to text.]
11. Craigie Mark, Brian Loader, Roger Burrows, and Steven Muncer. "Reliability of Health Information on the Internet: An Examination of Experts' Ratings." Journal of Medical Internet Research 2002;4(1):e2. Retrieved February 4, 2004, from http://www.jmir.org/2002/1/e2/. [Return to text.]
12. Konner, Melvin. Medicine at the Crossroads. New York: Pantheon, 1993, p. xxi. [Return to text.]
13. Flemming, Tom. Health Care Information Resources. Retrieved February 4, 2004, from http://www-hsl.mcmaster.ca/tomflem/top.html. [Return to text.]
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