Articles and Information
by Members for Members

Medical Information on the Web

by James A. Lewis, MD

About five minutes after volunteering to give this talk, I had two insights: I am probably the least technically proficient member of the club, so offering my expertise in using the computer was laughable; and, given the ease of finding information on the Web, the need for a special talk on medical information was unrealistic, maybe even anachronistic. What I decided I really wanted to do was discuss the use of medical information more than locating information. Rather than a travel guide, this is a discussion of some fundamentals about doctors, diseases, the medical process and communication.

Language:

Like every profession, the medical field has an extensive vocabulary of words that sound like English, but may have special meanings — terms of art, technical terms and jargon. Remember the discussion in Goodbye Columbus, between the boyfriend and girlfriend, concerning the use of the home pregnancy test? Did a positive test mean you were pregnant, or not pregnant? Which was the most “positive” outcome? If you think about what a doctor does, the obvious answer is: diagnose and treat diseases.

What is a disease? Surprisingly, the answer is not absolutely clear-cut or obvious. Biologically, any condition that impairs the chances of the individual or species surviving, is a disease. Homosexuality and driving in NASCAR races ought to be diseases, but they are not; and many conditions which would almost universally considered to be diseases are not actually life-threatening, but only discomforting. They produce dis- ease. Technically, a disease is a condition in which a known cause (the etiology) causes a distortion in normal structure and/or function of the organism (the pathophysiology) , thus producing various symptoms (subjective states that the patient is aware of) and signs (objective markers of altered function, e.g. a dilated pupil, irregular heartbeat etc.).

Diseases have an expected course over time (the natural history) and some anticipated outcome (the prognosis). To diagnose means to come to know thoroughly. Vast numbers of conditions that lead to a doctor visit do not have known causes, their course and manifestations may be obscure, outcomes confused etc. These conditions which seem to represent distinct entities, but are not totally well-defined, are called syndromes (a set of signs and symptoms which travel together).

For every known disease, there are probably hundreds of syndromes, many of which are subject to intense debate, discussion, and partisan divisions within medicine…just ask a group of doctors about fibromyalgia or chronic fatigue syndrome. So, a diagnosis may end up with a label referring to a disease, or a syndrome. In either case, the diagnosis is in some sense an action-statement which carries the covert message: This is how you treat the patient.

Medical doctors treat mostly by giving medicines; surgeons, by plying the cold steel; psychiatrists, by talking to the patient. In virtually all cases, when the doctor proffers a diagnosis, when he says “You have X, and need to do Y…” what he really means is: “Considering what you have told me and what I have seen on my examination, I think it is very likely that you have X, and in my opinion, the best course of action would be Y.”

These are always statements of statistical understanding. It is explicitly understood by the doctor (but often not the patient) that there is a differential diagnosis for any set of complaints and findings, a list of possible conditions which would more or less fit the situation; and that selecting THE diagnosis from the list of possible explanations is more an act of faith and hope than a statement of fact.

Selecting the best treatment for any condition is even more problematical. We currently talk a great deal about evidence-based medicine, meaning that the treatments we consider have been subjected to intensive scientific scrutiny, usually by a process of randomized, placebo-controlled clinical trials that satisfy an endless series of restraints for statistical significance. Many of our favorite treatments have never been studied in this way.

Expectations:

In the medical encounter, like many other interactions one enters into, both parties have expectations about what is going to happen, how it should happen, and what the outcome should be which are sometimes so deeply held that the players may not even be aware that they exist. It is widely believed that good health is the “normal” state of affairs, and deviations from good health are both uncommon, and often serious. In fact, studies have shown that about 20% of the population feels ill or unwell on any given day.

It is almost universally stated that “being sick” is a bad thing, and probably nobody in the world would admit that they might choose to be sick rather than well at any given moment. However, people who are sick often are relieved of duties that might not always be fully rewarding; and sick people often become the focus of loving attention in a family. In some cases, society has created mechanisms that reward illness or injury. The doctor expects that some clients will present nonexistent complaints in order to get these covert or overt rewards; this is called malingering, and is reasonably rare in most medical practices.

Equally rare are a small number of patients who simply enjoy doctor visits, or for some reason feel that medical treatments (even extreme ones like surgery) are in some way rewarding, so they consciously pretend to be sick. This is called factitious illness. Curiously, most people who do this have no diagnosable psychiatric disease.

Finally, there are people who sincerely believe they are sick, but are not. Those with obsessive concerns for their health, which persist despite endless and repeated failures by doctors to find any satisfactory diagnoses or treatment, are said to have hypochondriasis, or somatiform disorders. Often the line between malingering, and unconscious production of problems is poorly defined and may become a point of contention between doctors, lawyers and patients. The family physician in general expects about 30% of patients to have no real illness, or at least, nothing terribly serious. Perhaps 10% of people who regularly see their doctors are thought (by the doctor) to have most one of these “functional” conditions. I believe the “dead men DO bleed” mindset is a huge clue toward the diagnosis of a somatiform disorder.

Another expectation that is widely held by patients is what I call the Ocean's 11 scenario, after a scene in the first movie with that title. The patient says: “Give it to me straight, doc…is it Big C?” The doctor turns to his view box, which displays a chest X-ray (upside down in the movie), glances at it for a moment, and then grimly nods to the patient. This implies that there are signs of a disease which are infallibly present (the pathognomonic sign); that lab tests can reveal these signs; that the results are immediately obvious to the doctor; and implicitly, that they are always right. None of this is true. There are, for all practical purposes, no pathognomnic signs for any disease. Many conditions have no lab tests that will help to diagnose them; many lab tests are very difficult to read, and all lab tests will produce both false-positive and false-negative results. A lab test is simply an extension of the physical exam, a way of eliciting signs of a disease. What a lab test “tests” is the hypothesis: My patient has disease X, so sign Y should be present.

Drug treatment:

This topic is so huge and so intricate that it would take hours to even begin to scratch the surface. I will mention only a few salient points. I mentioned placebo controlled trials above. A placebo is a treatment thought to have no reasonable chance of helping the target condition, and so benign that it could not possibly harm the patient. In a drug trial, a group of patients are gathered who have disease X by the most appropriate studies; they are randomly assigned to take the active treatment or the placebo. The placebo is disguised so it can not (hopefully) be differentiated by taste, appearance etc. from the active drug. A proportion of the patients take the placebo, the rest take the active drug, and (in a double blind study) neither the patient nor the examiner know who is taking what until the study is over. When a drug is proven to help disease X, the FDA approves it for this purpose; and it is sold under the manufacturers' chosen brand name (a proprietary drug). After seven years, competitors can start making the drug and selling it in a different pill or capsule, with a different brand name (a generic drug). The active ingredient is the same in the two cases, but the structure of the pill or capsule is usually different. Only very rarely are there any real differences in the effect of a proprietary drug vs. the generic form. People who are allergic to some drug are almost always allergic to one specific molecule. A drug with the identical effect, which might be different only very slightly on the chemical level, is not likely to produce an allergic reaction simply because the first drug did. There are no patients who are allergic to “narcotics” or “blood pressure pills” etc. as a category.

FINALLY, some sites:

I think there are several levels of information on the web. They vary in the degree of confidence a user can have that the information received is true and unbiased. The best sources of information that I know of come (surprisingly) from the government. My number one most useful source is the National Library of Medicine. The home page will direct you to tutorials, FAQs, breaking news, and the two best information sources around: PubMed, and MedlinePlus. PubMed contains approximately 25 years of all published information from medical journals (mostly in the form of abstracts – you will frequently find a link to a journal where you can find the complete article, but you usually have to pay for it). Medline is a patient-information site.

Cdc.gov (Centers for Disease Control and Prevention) contains information about epidemics, infections, and epidemiology in general. You can get the MMR on this site, which is the weekly report of morbidity and mortality for the entire country. FDA.gov tells you about approved or pending drugs. The Government Printing Office has health and medicine materials for sale at reasonable prices.

About the same level of value can be found at sites created by providers. There include virtually all hospitals, large clinics and medical schools. See mayoclinic.com, Clevelandclinic.com, MGH.com, etc. Every professional medical organization has its own site. The American Academy of Neurology (and certainly an endless number of specialty groups) has a specific site for patients, thebrainmatters.org.

Perhaps one step less pure information comes from patient support organizations. Every disease has a support group, and they all have web sites. Some diseases, like epilepsy, have several ( Epilepsy Foundation of America and International League Against Epilepsy, listed by initials). There is a group for people with rare diseases and a group for people whose doctors haven't been able to diagnose their condition (sorry – I couldn't find the name for this one). If you blush too much, sweat too much, shake – whatever, there is a home for you on the web.

Sites prepared by people or groups with less definite agendas – often simply commercial providers of information – can be excellent. One of the most widely visited sites is WebMD. Healthfinder was recommended by one of the town doctors. Medscape and AOL Health seem OK. There are many sites that are clearly maintained by people whose main interest is in generating business (or believers in their offbeat treatments). There are some, apparently frequently visited, that I can't really judge: Diagnose Me, My Electronic MD, and Just Answer.

Every drug company, and indeed, every drug as far as I can tell, have their own site. The proportion of hype to knowledge is probably higher than on most of the less partisan sources already mentioned.

Woman's health is a highly focused topic. Several doctors in the community suggested: womanshealth.gov, mymidwife.org, maternitywise.org and epigee.org. I ran across 4women.gov. The National Assoc. for Visually Handicapped is at navh.org. American Autoimmune Related Diseases Association has aarda.org. The Public Library of Science seems like an ambitious project that should be useful; but doesn't have much medical information, at least when I checked it recently (plos.org). You can read the acceptance speeches of Nobel Laureates at nobelprize.com.

Additional useful sites include the NIH's senior health site's stroke pages and

James A. Lewis

11/27/05