“I get a little help from my friends”. Where would we be without the help of others? When you are looking for information to guide your decisions about your health, how do you know who to trust? There is a lot of information out there on the internet, and not all of it is sound or accurate. That is why your health care provider may cringe when you mention googling your symptoms or condition – it can become quite the trip down a rabbit hole. Besides, it is always appropriate and safer to seek diagnosis from a trained health care professional rather than “Dr. Google”.
Who do you turn to for reliable information?
Now in my years of practice, I always welcomed patients’ questions, lists and print-outs. However, it was often very time-consuming to go over everything they brought in. I often made recommendations about where they could look further. For example, start by looking at the source of information. Credible sources of medical information include (Links provided at end of blog):
- Federal and public health websites such as the Centers for Disease Control and state public health departments
- Medical association guidelines, such as the American College of Gastroenterologists (ACG) and American Urology Association (AUA).
- Condition-specific foundations often have a medical board to ensure information is up-t-date and accurate. Examples include the Peggy Lillis Foundation and The C Diff Foundation for c diff.
- Medical associations, medical school and teaching hospital sites, such as the Mayo Clinic and The Cleveland Clinic and The American Association of Family Physicians.
- Medical content providers, such as WebMD.
These websites will present information based upon current clinical data. We call this “evidence-based medicine”. For example, we use drug “A” to treat a specific condition because we have studies that shows “A” works for that condition and is safe. We aren’t guessing or assuming it works. TIP: Look for citations to studies. A reputable source will cite the sources they used to provide the information. They may be within paragraphs or at the end of the piece.
Keep in mind that not all studies are conducted with equal diligence. Bias is common. However, if sources are listed, you know some research has been done on the subject.
What are some examples of reliable sites?
Federal and public health departments are a good place to start. They produce public education using the latest clinical data, bench science, clinical trials and health policy. The Centers for Disease Control comes to mind as the foremost resource in the US. The National Institutes of Health is a good resource for clinical studies. During the COVID pandemic, I have been receiving and monitoring regular reports from my state public health department, the Oregon Health Authority.
I often go to medical association sites. These are intended for providers to access, but many make their guidelines for treatment and diagnosis available to the public. Some don’t. Simply google “urology association” or “cardiology association” and the site should show up. Once on an association site, look for a tab for guidelines. These guidelines are written based on best available data or consensus, and help providers diagnose, treat and manage a condition. For an example, see guidelines on c diff here Clinical Practice Guidelines for Clostridium difficile Infection in Adults and Children: 2017 Update by the Infectious Diseases Society of America (IDSA) and Society for Healthcare Epidemiology of America (SHEA) (idsociety.org). Guidelines are updated from time to time as new information comes out. They are, by necessity, pretty wordy and nerdy but you can look up a condition, like IBS or COVID and see what is recommended for testing, diagnosis and treatment and get an idea of your options.
Foundation websites can be helpful too. The American Urology Association has a website called the Urology Care Foundation that allows public access to patient handouts. You know, the stuff your provider may hand you in clinic about a condition, like kidney stones (they have GREAT resources for you there, including a cookbook for stone patients). As mentioned above, you can google a condition and find foundations like the Peggy Lillis Foundation for c diff. Look for medical staff on the board of directors on the “about” link. That ensures there is some medical oversight of the information presented on the site. You can find info on clinical trials, and often good patient information about the condition. They may have a support group or telephone access to educators and even patient conferences you can attend.
Medical facilities, teaching hospitals and medical schools often have databases of medical conditions, and documents like protocols and discharge instructions you can access. They also have links to their clinics and providers. I accessed these types of sites when researching protocols for fecal microbiota transplants, so my surgeons could set one up for me.
Content providers like WebMD also cover a wide range of topics. In addition, WebMD now uses the Natural Medicines Comprehensive Database platform to allow you to look up herbs and supplements! I subscribed to the NCMD for many years. This is a patient based, way less comprehensive version, but it does give you some indication of what is known about a given compound. I highly recommend it as a resource for supplements. While it doesn’t get into the nuts and bolts of all available research, it does let you know about drug interactions and suggested dosing for specific uses.
What are less-reliable sources of information?
You may need to more carefully assess the quality of information on sites such as:
- Blogs (OK, I know you are reading MY blog right now! Just look critically at the information provided.)
- Websites from individuals, like “Dr. So and So” or celebrities.
- Sites selling product, especially supplements. In all fairness there is sometimes good information on pharmaceutical websites, for example, Rebiotix, who is waiting for approval on a new treatment for c diff. But beware of info from someone selling something. They have a bias.
Also consider the platform. I would not advise looking for health information on TIk-Tok, Instagram You Tube or Facebook. Information presented on those platforms, often from “influencers” is not vetted for accuracy or appropriateness. Think “Tide Pod Challenge”. Not where you will likely find sound medical information.
I generally do not recommend websites from individuals, like a doctor or some other type of professional. While some of the information on these types of sites may be accurate, this is where information can get a bit murky and become hard to sift through. Often these individuals are selling something – a book, a diet plan, direct to consumer lab tests. Anyone selling you something has an obvious bias to provide information that promotes their product. I just looked at such a site this morning. While there were citations of research, they did not support the claims being made about the product. When he discussed that a supplement supported the microbiome, he cited research that was about improving symptoms of reflux. Not the same thing.
How can I evaluate medical information?
Here is a good link to a discussion about evaluating health websites, from the University of Pittsburgh Medical Center, an example of health information on a website from a large university medical center How to Find Reliable Health Info Online | UPMC Healthbeat .
Next post, let’s explore a technique you can use to combat anxiety. See you then!
Centers for Disease Control and Prevention (cdc.gov)
National Institutes of Health (NIH) | Turning Discovery Into Health
Guidelines – American College of Gastroenterology (gi.org) Guidelines – American Urological Association (auanet.org)
Home – Peggy Lillis Foundation (peggyfoundation.org)
What Is Cdiff? – Cdiff.Foundation
Diseases and Conditions – Mayo Clinic
Medical Questions & Answers | Cleveland Clinic
Trusted Health Education from Family Physicians | familydoctor.org
WebMD – Better information. Better health.
Rebiotix Inc. Microbiota Restoration Therapy™ Drug Platform Explained
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