We’re inundated with news of new medical advancements, new drug discoveries, and research on what’s good and what’s bad for you. It’s challenging to decipher just what is truly real and what is not. How can health care providers even stay current when so much happens so fast? How do I ask my provider about something I heard on the news or read online? These questions are all important ones for patients or even concerned friends and family members. Fortunately, there are some general guidelines to follow.
Take note of where you read it
First, if you hear or read something, try to capture where you heard it or read it. Usually, if it’s a news story on television or the radio, remember the station; you can go to their website and find the story. Same thing holds for newspapers — the stories are generally also available online. This is important because most of us won’t hear, or won’t remember all the details the first time through, so you’ll need to go over the story a second time. It sounds a bit like studying, but it’s the best way to see if the issue really relates to you or your loved one. It also helps, because if you have it handy when you go see your provider, you can quickly share it if the story is new to him or her.
Is anyone really in a good position to be able to look at a story and know if it’s true or not? That’s a really complicated question. Sometimes very reliable sources have published things that turn out not to be true. The more reliable medical journals have a process called “peer review.” This allows a group of qualified experts (peers) to review an article before it is actually published. Peer review is not perfect. When high-quality journals discover a problem, they retract the paper, but that does not make people forget it was there.
A classic example was the paper that claimed there was an association between some childhood vaccines and the development of autism. Not only was the paper retracted (12 years after it was published), but the main author had committed scientific fraud in the process of conducting the study. He is barred from practicing medicine in the United Kingdom, where the fraudulent research was conducted. Still, the paper and its conclusions had more than a decade to influence public opinion.
Additionally, medical journals like to publish “new” things, for some fairly obvious reasons: physicians and scientists are drawn to journals that publish cutting-edge information, and those journals develop what’s called a high-impact factor. We physicians like to have our papers in these high-impact journals and we read those journals. News media scan the high-impact journals to report on their papers, thinking that if a high-impact journal has accepted the paper, and it’s passed that journal’s peer review process, it has got to be an important finding and “true.” On the other hand, near the end of every paper that describes something new, the authors will usually write something that says additional studies are needed to verify the findings. Later studies do not always verify the first, “new” paper. The new finding may have been wrong because, if the first study described a new treatment, it may have more negative side effects than were seen in the first study. This usually happens when the first study is very selective in selecting patients. Often, larger populations lead to different results. Unfortunately, the follow-up papers that negate the “new” findings may be published in a lower impact journal, and may not have the same audience.
With information easily accessible on the Internet, it’s hard to tell from a website address how reliable the information will be. Many are reliable, but some dot-com sites are trying to sell you something. Some dot-edu sites, which are from teaching institutions, are postings from individuals and have not been reviewed in any way. Dot-org sites may also not be reputable.
Take control of your education
So, what can you do as an advocate for yourself or for a loved one? Don’t give up on Google (there are other good search engines, of course). Google reports that 1 in 20 searches now are for health-related issues. In an effort to help with search results, in February they partnered with the Mayo Clinic to offer expert-reviewed information that appears in a box on the right side of the screen of your Internet browser, and is prominent in the Google app on mobile devices. Still, as we’ve shared, the experts may be “right,” but that does not mean that what is suggested is reliable or widely available.
What are reliable places to look that your provider is likely to agree are reliable? Three offer very useful information. One is the Centers for Disease Control and Prevention (cdc.gov). That federal agency focuses on infections and poisons. This is the group that advises providers on what immunizations are best for people at different ages. Their guidelines are easy to understand. The search tool takes “plain” English and medical terms, so you can search, for example, ear infection or it’s medical term “otitis media.”
The National Institutes of Health (nih.gov) covers a great many illnesses and also offers the National Library of Medicine, which is where many medical journals are indexed. So, if you search the NIH site for what happens when there’s a full moon, the results almost all have an “nlm” in the URL. When you click on a link like that in a search result off the NIH site (you can occasionally get the same site using Google), you get a brief summary of the paper called an abstract. Abstracts are usually a good way to see if the paper has what you’re looking for: in the case of searching full moon, almost all the abstracts do not find a relationship between full moons and human health. If you search a specific disease on the NIH site, you may well get “plain” English information, guidelines for treatment, and can find ongoing clinical trials investigating that illness.
Another site is the Cochrane Collaborative (cochrane.org). This is an international collaboration of physicians, researchers, scientists and others that works to perform systematic reviews of medical literature to determine the best evidence to treat, manage or diagnose illnesses. The search accepts “plain” English, but for me, the results are more useful if I use the actual medical term. If you search, for example, “ear infection,” the first results are about external ear infections. If you search otitis media (the medical term for middle-ear infection) the results are more focused (and the same as if you searched using the term “middle-ear infection”). At the Cochrane site, results often include an assessment of the medical evidence, generally developed by trying to combine many studies and looking for the most likely outcome. The evidence-based reviews offer a “plain language summary.” So it’s easy to understand what the evidence shows.
Finally, there are other good sources of information. These include organizations like the American Academy of Pediatrics (aap.org), which are national groups of physician specialists. Many of these organizations have current and validated information about diseases, diagnosis, management and treatments. One organization, the American Board of Internal Medicine Foundation, started the Choosing Wisely initiative (choosingwisely.org), another effort to weigh evidence and make recommendations about what not to do. Many specialty organizations have now contributed to this site, in an effort to help providers and patient not do too much. The team behind Consumer Reports magazine is also contributing to this site, in collaboration with the specialist groups.
Patient-support groups have grown around specific diseases. For example, there are a group of kidney diseases called polycystic kidney disease (PKD). The PKD Foundation has been founded to help support patients and their families with PKD. Its website (pkdcure.org) has basic information and also has a “Research” link. Off that link you can see what trials are going on for patients with these conditions, what the trials are studying, and even how to contract to see about getting enrolled on a study.
So, there are ways to get really good, really useful information off the Web. The most important thing is to discuss what you find with your provider. Bring the information either printed or being a list of the websites you’ve found. Together, you and your provider can work to make your care state of the art.