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Patient Education - Getting Started

Caveat lector: A word of caution regarding medical information on the internet

Patient Education - Getting StartedIn the present age, there is no lack of available information. Good and reliable information, however, remains difficult to find. This statement is most true of medical information on the web. Most of the publicly accessible medical information on the web suffers from one or more of the following critical flaws:

  1. Lack of evidence base – information does not accurately reflect or derive from current scientific literature
  2. Lack of adequate context – insufficient background information or perspective provided, making interpretation of material difficult
  3. Excessive use of jargon – wording of material is unnecessarily complicated, restricting understanding by persons without medical training
  4. Bias due to financial interests

Of these, problem #4, bias, is likely the most pervasive. The unfortunate reality is that the people and organizations with the most powerful incentives to publish on the web are those that stand to gain financially from your medical decisions. Thus, a significant portion of available medical “information” is actually a form of advertising by commercial entities (hence the suffix “.com”).

Where can unbiased information be found?

Reputable Affiliates and Colleagues >>

Endocrine Resources >>

Information about healthy web surfing >>
(U.S. National Library of Medicine and the National Institutes of Health)

Evaluating Internet Health Information >>
(A Tutorial from the National Library of Medicine)

Several nationally-based, non-profit professional and governmental organizations support websites containing publicly available expert summary statements and guidelines. These documents, though technically worded, are based on scientific literature and are significantly less subject to bias than commercial material. Go to these

A small number of reputable patient-driven organizations publish medical information on the web. This literature has the advantage of being highly readable. Go to these

The Institute for Clinical Systems Improvement (ICSI) is an independent, non-profit organization committed to improving health care quality. ICSI publishes care guidelines for patients and also recommends medical information websites that have been evaluated for accuracy and readability.
Go to these

How can the quality of medical research be evaluated?
The knowledge we gain from medical research is far from perfect. Depending on their design, studies are vulnerable to different types and amounts of error.

Flawed research studies have led to major reversals of medical opinion in fields such as vascular surgery (1), women’s health (2, 3), and others. In some cases, the reversals have been sufficiently dramatic to cause the public to lose faith in medical science’s ability to provide clear answers, even to seemingly straightforward questions.

Medical science must be studied with a healthy sense of skepticism. Reputable scientific journals subject new research articles to a process of peer review (reading and critique by experts in the field) prior to publication. This affords some degree of safeguarding against study flaws, bias, and fraud. However, the system is far from perfect, as demonstrated by recent fraudulent publications in stem cell research (4).

The Institute for Clinical Systems Improvement has published an evidence grading system for use in evaluating the quality of research studies:
https://www.icsi.org/

Similar systems have been used in the creation of consensus statements and practice guidelines, such as the ones discussed above. It follows that medical recommendations are only as strong (or weak) as the research studies on which they are founded.

How can I access the original medical literature?
The best place to go for reliable information in the internet age is the same resource people have been using for centuries: the library. The National Library of Medicine (NLM) and NIH jointly provide a service called PubMed, which allows the public to search the primary (original) medical literature and read articles in abstract (abbreviated) format:
www.pubmed.gov

Similar search results can be achieved with Google Scholar ™, which has a more user-friendly interface:
http://scholar.google.com/

Persons without medical training may find navigating original articles overwhelming. Nonetheless, it is essential that all material you read make reference to the primary medical literature – otherwise, you have absolutely no way to gauge its accuracy. For all you know, it may be completely false and misleading

How can I make sense out of all of this?

  1. Be skeptical. Assume that all medical information you read is false until proven otherwise.
  2. Investigate people’s motives. Pharmaceutical companies, medical device manufacturers, and other private/commercial medical enterprises (“.com”s) are all trying to sell you something. Ask yourself whether their product or service will actually help you or merely enrich them.
  3. Make sure that the material you are reading is based on hard facts, i.e. the primary medical literature.
  4. See a doctor. Though patients are increasingly well informed, there is still no substitute for a face-to-face conversation with a physician you trust. Doctors are trained to make decisions based on medical science, and they are the only ones capable of recommending care that specifically applies to you.

Biased websites: "Riddle me this…"

A classic riddle involves a traveler that comes to a fork in the road, where only one path is correct. The traveler is confronted by two identical-appearing guards: one that always tells the truth, and one that always lies. The clever traveler is able to devise a single question that, when asked of either guard, reveals the correct path. See the answer

The riddle illustrates one obvious point (that uniformly truthful sources are informative) and one non-obvious point (that uniformly false sources are also informative, i.e. they can be disregarded). If one were to substitute two guards that are sometimes truthful and sometimes not, finding the correct path would become impossible.

Websites with the greatest potential to mislead, therefore, are those that contain a mixture of accurate and biased information. This is well known to the authors of such sites, who may deliberately intersperse truth and salesmanship to create a "smoke-screen" that keeps the reader off balance.

Patient education: our priority

We were motivated to design this portion of our site because of our patients – many highly educated professionals who struggled to make sense of medical information on the internet. On a daily basis, we try to provide clarification where patients have been misled by biased literature. We hope that you, the intelligent reader, will critically examine all medical websites that you see… including ours.

More on healthy web surfing from the U.S. National Library of Medicine and the National Institutes of Health:
http://www.nlm.nih.gov/medlineplus/healthywebsurfing.html

Continue on to disease information page

1. Tu JV, Hannan EL, Anderson GM, et al. The fall and rise of carotid endarterectomy in the United States and Canada. N Engl J Med. 1998;339(20):1441-7.

2. Enserink M. Women's health. The vanishing promises of hormone replacement. Science. 2002;297(5580):325-6.

3. Michels KB, Manson JE. Postmenopausal hormone therapy: a reversal of fortune. Circulation. 2003;107(14):1830-3.

4. Kennedy D. Editorial retraction. Science. 2006;311(5759):335.

The material on this page is solely for educational purposes and not intended to serve as medical advice.