When you’re writing memoir, building a fictional world in your book, or developing something like self-help content, touching on matters related to health requires some extra prep work. If it’s in print, chances are someone who knows the field is going to catch errors eventually. For instance, a neuroscientist and psychologist at the University of California, Berkeley was called out a few years ago by the BBC and others for factual inaccuracies in a book on sleep such as the idea that less sleep always is bad news.
About a decade earlier, a popular book by an economics professor about pregnancy called Expecting Better raised the ire of medical experts after the author suggested that imbibing a glass of alcohol a day during the second and third trimesters was fine for pregnant women. Even Sir Arthur Conan Doyle, the British author who had trained at one of the best medical institutions of his time, was chastised in 1904 by the Journal of the American Medical Association for having Sherlock Holmes misstate how eyeglasses work.
Fast forward a century-plus later, and there are many more health facts to run afoul of. Even when touching on something like stuttering or dyslexia, it is important to do some research before trusting web-related content in particular—not only to avoid misrepresenting conditions in a way that could make life tougher for individuals that experience them, but for your credibility as a writer.
The good news is, reliable and free resources exist online and elsewhere to guide your presentation of health-related facts. Here are some tips on finding the best health resources, based on decades of covering health topics as an editor and writer.
Finding Reliable Health Sources
Government agencies and large, professional medical organizations may be your best source of general, widely accepted information about a disease, particularly statistics. For instance, if you wanted to mention a child having anything from asthma to learning disorders, the American Academy of Pediatrics would be a good bet, including their healthychildren.org website intended for parents. In covering anything from hernias to chronic heart disease, the Centers for Disease Control and Prevention (CDC) often has good overview information, and reliable data, with counterparts such as the National Cancer Institute or the equivalent one for allergy and infectious diseases a decent bet for more specific health challenges. And Medline Plus, an offering from the National Institute of Medicine, offers a broad, lay-oriented database of health information in print and other media such as videos, a medical encyclopedia, and more. There are also well-respected non-profits such as the American Heart Association and the American Diabetes Association that have well-developed general information for lay readers.
Large, national associations like these also have a large enough membership to have an expert or two that you could be directed to ensure you cover a health condition well if it plays a large role in your story. That is among the recommendations for handling more involved health condition mentions by mystery/thriller/suspense writer D. J. Palmer, whose novels include one on dissociative identity disorder (once called multiple personality disorder).
You can also find easy access, lay-focused health content on sites such as the Mayo Clinic and Cleveland Clinic websites, and medscape.com, which is intended for medical professionals, but is broadly accessible. In part, these sites often have experienced medical writers develop content, as well as noting when they run articles by a medical expert so that you know the take homes have been vetted professionally.
With smaller organizations, fewer eyeballs, or non-medically trained ones, may be checking their statistics, or the same information may stay up longer, while the general medical consensus about aspects of a condition may have changed. But in other cases, smaller, disease-specific non-profits can be more up to date in presenting the latest research findings in their niche area, as well as being more attuned to how people with an illness prefer to talk about themselves and more.
Other websites may be funded by a drug company (if you see that it eventually plugs a product, bells should go off), or share a political perspective that could influence how information is presented. That’s not to say that political influences don’t impact federal health-related organizations or non-profits, as has been suggested to have occurred with the CDC, for example, regarding Covid-19 information handling in the recent past).
Tempted to use web resources like Wikipedia? When I’ve fact checked science and health care content, crowd-sourced sites like Wikipedia.com have been verboten, with the preference being for something like Encyclopedia Britannica. That stems in part from a 2005 study in the well-regarded journal Nature, which found that Wikipedia content had about one more error on average (four instead of three) than Britannica did. However, a 2011 study that the Wikimedia Foundation funded involving Oxford University suggests that the factual differences have disappeared. Regardless, crowd-sourced sites are a good as a starting point for looking at their related source links, which may lead you to a variety of useful content.
For quick information such as on how a disease is defined, you can also gain free access to one of the better medical dictionaries (Stedman’s) through thefreedictionary.com. Or here is a roundup of dictionaries and other resources to better understand medical terminology.
Quality Testing Online Sources
A good rule of thumb may be to check more than one organization if you’ll specifically use big picture information such as statistics, and to double-check when—and by whom—content was last reviewed and updated online (the CDC provides “last updated” language on the bottom of many of its webpages, for instance). Other tips about how to know when to trust online health information are available, such as a tutorial from Medline Plus with questions that you can ask while reviewing content quality.
Big Picture Considerations
Keep in mind that, medically speaking, terms like syndrome and disease mean different things, as covered in this quick overview. Although syndromes can be viewed as being less involved, that doesn’t negate the reality or severity of something like chronic fatigue syndrome; that is, something can currently be labeled a syndrome simply because the medical establishment hasn’t figured out what causes it, which is required before officially labeling it a disease. In addition, someone who experiences something like chronic depression and prefers to view it from their lived experience may use the term illness, while the medical establishment is more likely use disease, referring to the anatomical, genetic, and other hallmarks involved (language nuances like this with health topics are a whole ’nother topic to address separately).
Broadly speaking, your best bet is to stick with health resources from within your own country. That’s because some diseases have genetic, as well as environmental and lifestyle, factors that directly or indirectly influence how common a disease is, how it develops, and more. For instance, stomach cancer is rare in the United States and more common in some Asian countries, potentially due to differences in what genes are active in differing populations, as well as differing approaches to diet and more (aka risk factors).
It's also best to approach covering health information with the same care you would want another writer to approach a disease with if you have developed it: try to “do no harm,” just as those in the medical profession must pledge in taking the Hippocratic Oath.
Barbra A. Rodriguez at Vital Wordplay is an award-winning writer who serves as a ghostwriter and developmental editor of nonfiction, as well as a line and copy editor of fiction and nonfiction for clients such as publishing houses and independent authors.