The Truth Shall Set You Free: Advising Patients on Seeking Health Information on the Internet
Primary Care Blog
There’s probably not a physician in practice who hasn’t had a patient come to the office with a briefcase or an iPad loaded with information that they have downloaded from the Internet and want to ask you to review their research and ask for your opinion.
One of the most common uses of the Internet is increasingly for gathering health information. Research by the Pew Research Center's Internet and American Life Project and the California HealthCare Foundation (CHCF) found that 80% of Internet users look online for health information, making it the third most popular online pursuit among all those tracked by the Pew Internet Project, following e-mail and search engines. The most likely groups to look online for health information include caregivers, women, whites, younger adults, and adults with at least some college education.
The Internet provides hundreds if not thousands of cancer cures. There are all kinds of connections and unusual or bizarre treatments that will sell themselves because of claims that there’s a conspiracy of silence in the medical community. At the end of the day these Internet sites are trying to sell our patients a myth or based on a testimonial of the hidden or secret cancer cures.
The Internet is loaded with rumors, urban legends, and myths that are spread as scientific fact. There are many ideological groups spreading misinformation to promote their particular worldview. There are also plenty of people who are trying to separate our patients from their money by making false or misleading marketing claims or using hype rather than real information to promote a product or treatment.
Today it is easy for anyone to create a snazzy website and make it seem like they’re an impressive organization. Here are some red flags to warn our patients:
1. Beware of so-called institutes or organizations that seem to be doing nothing more than promoting a single individual. Beware of sites that seem to be trying to sell you something; they are probably distorting information to make that sale.
2. Beware of sites that are clearly one-sided. For example, The Institute of Syndrome X has only one purpose and that is to promote their treatment and elixir that can cure your patients of their various maladies.
3. Advise caution about patient and disease-oriented groups. These groups are well-meaning and may honestly want to do what’s best for patients, sufferers, and society, but they don’t have culture of science and no evidence-based facts to support their testimonials or claims.
4. Discourage patients from trusting testimonials. They are just anecdotes and do not represent scientific data. A good site has opposing information and it is good that patients see that there is a controversy surrounding a new treatment or drug.
We need to provide our patients with trusted sources. These are some reputable institutions, universities, and national societies: Yale, Harvard, the Mayo Clinic, Johns Hopkins, National Institutes of Health, the National Cancer Institute, and the Muscular Dystrophy Association. Also, we can suggest our professional organizations, such as the American Academy of Pediatrics, and the American Urological Association.
Finally suggest that patients look for peer-reviewed evidence. That’s where the rubber really hits the road when other physicians and scientists weigh in on the treatment or drug. Of course, having a peer-reviewed article is not a guarantee that the results will hold up over time or that they’re 100% accurate, but it’s at least a good starting point for our patients to do their research.
For doctors who are looking to do this research themselves, go to the website PubMed.org.
Bottom line: the god ol’ days of only the doctor having access to medical information are over. Today, with the help of the Internet, patients can be as knowledgeable as physicians. It has become our responsibility to lead them to the right sources.
Neil Baum, MD, is Clinical Associate Professor of Urology, Tulane Medical School, New Orleans, LA, and author of Marketing Your Clinical Practice: Ethically, Effectively, and Economically, Jones Bartlett Publishers.