Long before you spoke with your family doctor or anyone else about your mental health concerns, you likely looked online. Your search introduced you to a flood of scary diagnoses. Google searches on each diagnosis then revealed some pretty astounding “cures.” You surely found dire predictions for what remains of your (now greatly shortened) life. Did you look up a medication someone recommended? The horror stories you found would make Stephen King or H.P. Lovecraft proud. If you didn’t have anxiety problems before, a few hours of internet searching would have changed that.
In the good old days, before about 1993, doctors had all the answers. Not anymore. Patients have more information, questions, and suggestions than ever. No matter how many doctors might like to put the genie back in the bottle, it’s not going to happen. If you’re taking a more active role in managing your care, you’ll need to do some research. The ability to locate relevant and accurate information is critical.
You can find almost anything on the internet, and that’s the problem. You’ll find a lot of both good and bad health information. There’s also a whole lot of money to be made by selling you health-related products. There’s no shortage of credible-looking information carefully designed to convince you that you have a disease. The same information will tell you, surprise, surprise, that their brand of snake oil will cure that disease.
Your doctor probably uses Google too, though not necessarily in your presence. It’s a speedy way to access information, much faster than flipping through books and journals. The difference is, they know how to separate the reliable information from all the rest. It’s time for you to learn to do the same. We’ll first show you how to improve your searching to initially filter what you find, and then we’ll touch on the limitations of clinical evidence.
It’s important to consider the source of any information, especially if you found it online. It’s generally understood that medical information from the Mayo Clinic, the US Food and Drug Administration (FDA), the UK National Health Service (NHS), or Health Canada is more trustworthy than something from a random website. Separating out credible from crap is rarely that straightforward. Here a few credibility traps easy to fall into:
Non-medical university sites. Medicine faculties in universities worldwide publish some great information. But just because something comes from a university does not guarantee its credibility. Be suspicious of information published individually rather than by a medical department. Also, be wary of medical advice coming from non-medical departments of a university. Pronouncements on psychiatry posted by one person from an education faculty likely do not provide a good basis for clinical choices.
Fake or discredited experts. Be wary of people who promote themselves as experts but who are not. They may no longer be affiliated with professional institutions or have been discredited. Searching for their names can corroborate their credentials. It can also reveal controversies or other reasons why they’re no longer considered credible.
Media stories. Health stories in the media focus on new treatments and innovations. They are an invitation to explore further. The information they provide should be considered in a broader evidence-based context, not alone. Most stories are drastic simplifications of the facts and omit vital information. They skip details that might offer a clue as to whether the story may be relevant to you. Many media stories come straight from press releases issued by the people in the stories. Modern journalists are stretched so thin that it is rare for them to spend the time to provide the context and detail you need.
Social Media. There are thousands of social media groups on mental health, many of which have very knowledgeable participants. But don’t act on advice you read there or base your research only on the recommendations you find in those groups. Groups tend to attract like-minded people. Even if something has massive support in a certain online community, it’s highly unlikely to be representative of the range of expert opinions you’d want to rely on.
Sales Materials. Finally, be wary of websites with studies or other information about a product they sell. This is particularly true of natural health products. The industry has few codes of conduct or rules about truth in advertising. At least keep pharmaceutical companies are kept on a bit of a leash by regulators like the FDA and Health Canada.
In science, including medicine, in general, independent validation is critical. If only one person or company makes a claim, don’t rely too heavily on that claim. Errors, omissions, bias, or even deception can undermine the claim. Validation tackles this problem by inviting other researchers to conduct studies that will either support or refute the claim. When multiple independent parties can make the same claim, you can have more confidence in its validity.
Independent validation relies on the credibility of all parties making a claim. If one is not credible, their support adds nothing to the claim. Independence can sometimes be difficult to verify. Different people or research groups may work for the same organization or receive funding from a common source. People may be former colleagues. They may be part of a fringe group whose methods and conclusions are well outside the mainstream.
Anti-psychiatry is an excellent example of a position taken by some fringe groups. These groups are made up of many different people from different institutions and disciplines. They all make very similar claims about psychiatry. They think it is a cruel, corrupt, and unjust practice focused on state control of dissent. They believe mental illness does not exist. They want all treatments abolished.
Look closer, and you see the same group of writers making the same group of claims. They generally reference one another to lend support to the claims. Critically, there is little intellectual engagement with the much larger mainstream psychiatry and mental health community. Such an echo chamber reflects a very limited, isolated, and self-reinforcing worldview. That is the opposite of independent validation.
Don’t hesitate to ask your care providers their thoughts on articles you’ve found. Ask them to recommend articles, journals, or other resources to explain a topic. You may find newer information using these same sources that your doctor is not aware of.
Before proceeding, we’ll let you in on a secret about evidence. People tell you a treatment they want you to use has been proven successful through evidence. Doctors and other professionals may use an evidence-based approach. Science gives us objective confidence through evidence.
Evidence is important. However, hearing there is evidence for a treatment often does not mean what you think it means. We’ll explain, but here’s the bottom line:
If someone says there is evidence that ‘X’ will treat your mental illness, there is a high probability that it will be of little help to you.
Most people need to try several different treatments before they find one or more that fully treats their illness. Evidence doesn’t predict what will work. Science doesn’t provide the certainty many people want. Here’s why:
Evidence isn’t an absolute. There are different levels of evidence, some stronger than others. This is true in all areas of medicine.
Mental health research is tricky because mental illness is so complicated. Illnesses are made up of many possible symptoms, each of which may have a multitude of different causes. Studies can show a treatment helps those with a certain illness, even if it only affects some symptoms or causes. These may not apply to you.
Stronger evidence results from limiting variability. To reduce variability, experiments may exclude people who have other physical or mental illnesses, people of certain ages, social backgrounds, etc. But mental health symptoms are affected by many factors, often intertwined. Limiting variability may produce stronger evidence, but the results may apply to very few people.
Thorough testing that takes into account the variability found in the real world is practically impossible. Tools to examine and measure results are also limited. Evidence in mental health, therefore, has more caveats. Evidence cannot reliably predict what will or won’t work for someone. It’s not like evidence in chemistry class where all you’re checking is to see if adding A to B turns B purple. Evidence in mental health is no guarantee.
If you want a deeper understanding of why evidence in mental health is less clear-cut, we’ve posted an in-depth article on this topic on our website (see Appendix A). It covers different types of studies and their associated levels of evidence, the quality of evidence, and explains certain technical meanings of everyday words such as “significant.” It also covers in great detail how study design is forced to hide so much of the variability underlying mental illness, even when what’s being hidden is very relevant to interpreting the evidence. It explains, despite these limitations, how to best incorporate mental health evidence into your own treatment.
This will also help if you need to argue with people about treatments. Compelled to justify why you’re not drinking 10 cups of tea each day made from a stinky plant that a persistent relative pulled from their garden? Go read the article. Or get them to read it. While they’re drinking their tea.
You’ve found some medical information that appears to be from a credible source. The best question you can then ask is, “Does this apply to me?”
Hearing that something is a “fantastic treatment” is meaningless. You need to know what condition the treatment is for and who it has been shown to help. You may need to dig deep to find answers. It’s human nature to believe or claim something is more widely applicable than it is. Which of these two claims would a salesperson rather make? Which could possibly be true?
This treatment will help everyone with any mental illness.
This treatment will help improve one symptom that occurs in 3.5% of all people diagnosed with major depressive disorder but was only tested on adult males aged 25–35 with no other medical problems.
Who does this medical information apply to? How does this treatment compare to other treatments? Are these other treatments ones you might be considering? If these details aren’t there, ask yourself why.
Everyone gets excited by the latest breakthrough. But when it comes to your own health, do you really want shiny and new? Or, do you want something slightly older but better understood? To put it another way, do you want to be a guinea pig?
The media likes reporting on the latest technologies and innovations. They are newsworthy. Another study of a well-known medication confirming it is safe and helpful is not as appealing to media. The drawback of trying the latest thing is that there are many unknowns. A new study finding an unexpected result needs to be independently validated and analyzed. Its findings may or may not stand up to scrutiny.
A newly approved medication may promise exciting and significant benefits over existing treatments. Testing during its development likely involved only a few hundred people over a few months. With an established medication, thousands or millions of peoples’ experiences reveal rare side effects and long-term impacts. Over time, concerns may arise about using it in some people, e.g., it can worsen another health condition. New insights into prescribing are learned. These improve effectiveness or tolerability.
We’re not suggesting you never take a new medication or participate in a new treatment program. But it almost always makes more sense to rely on established treatments first. If several standard treatments haven’t worked, then start looking at newer options. Recognize that newer options carry some degree of increased risk.
Companies are eager to showcase how their newest medications are better than older generation products. It’s not only about the novelty of newer treatments. It’s also about profits.
New medications are covered by patents that protect intellectual property for several years. The length of time varies by country. During that time, no other company can sell a version of the same medication. If you’ve got a blockbuster medication on your hands and you’re the only one who can sell it, you’re going to make a tonne of money.
After patent protections expire, other companies can sell their versions of the medication. These generics are often much cheaper than the original brand name medication. When the original monopoly ends, profits will tumble.
If the company releases a new medication for the same condition, that new medication will be protected by new patents. The monopoly clock starts all over again. It’s no surprise to see new medications released just as the patents for old ones expire. Some are genuine innovations that greatly differ from the older medication. Others are only minor reformulations, but still different enough to be patented. The company’s profits now depend on the ability to sell the new medication rather than the old one. They will trumpet any benefit, no matter how small, as a world-changing innovation.
When researching an illness or treatment, be very conscious of confirmation bias. This is the tendency to place higher value on information that agrees with your existing beliefs and to devalue material contrary to existing beliefs. We all do this to some degree, usually unconsciously.
Say that you’ve heard good things about a medication, maybe read a couple of positive articles. You may be inclined to believe it has a lot of potential to help you. Based on that belief, you’re more likely to notice other articles that reinforce your belief. You’ll also consider those same articles to be of higher quality. In contrast, you will tend to skip articles that show negative aspects of the medication. You may feel they are weaker articles.
Confirmation bias exists in many areas of life—politics and music to name two. When it comes to your health, you want to use the most objective evidence that you can find. You want to accurately appreciate the benefits and risks. You can’t avoid confirmation bias, but you can be conscious of it.
Everyone knows Google’s web search. A far lesser-known tool is Google Scholar (scholar.google.com).
Google Scholar doesn’t search the entire web. Instead, it searches only reputable academic journals and similar publications. For reliable medical information, this is a gold mine. Finding information in a reputable journal is a good step forward. But it gets better.
Academics build on the work of other researchers. They carefully put their contribution in context, comparing and contrasting it with existing work. This is reflected in the lengthy reference lists at the end of academic papers. For each paper, Google Scholar tracks which other papers it references. It can answer questions such as, “How many other papers have referenced this one?” A paper referenced by 1,000 other papers has something important to say, good or bad. A paper that few others have referenced could just be very new. If not, it doesn’t have a lot important to say, at least as far as influencing understanding within its field.
Google Scholar makes it easy to follow these chains of references. You can identify key papers and see how they are regarded by other authors. For papers published several years ago, you might find newer or updated information. It may either support or refute the information in the original paper. Used wisely, Google Scholar can ensure what you read is relevant, credible, and reflects the best current understanding.
Unfortunately, the entire paper may not be available to view or it may require a fee. Some papers can only be read by people or institutions that pay for pricey journal subscriptions. In other cases, you can pay for individual papers yourself. Without paying, you may only see the title, authors, publication details, and abstract.
You’ve seen many ways that dialogue with your treatment providers can improve your care. This also applies when sharing information that you’ve found online. You may introduce them to new ideas helpful in your case and perhaps even with some of their other patients. They may gain insight into how you’re thinking about your illness and the questions you have. At the same time, they may help you by providing further context based on their training, research, and experiences. They can help you apply general information to your specific situation. Often, the back-and-forth will lead in a new and promising direction.
You may be excited about what you’ve found. But, the odds of it being an undiscovered silver bullet are slim. Don’t approach your treatment providers with the intent of dictating a new plan solely based on an internet search. Instead, think about having a discussion. How does this new information apply? Bring a copy of your research to give to them. Highlight some of the most relevant bits. Be prepared to concisely summarize it. At the same time, don’t insist they talk about it right then and there. The most open-minded doctor may have other things they need to complete during your appointment. Most importantly, when they do discuss it, listen to what they say just as you expect them to listen to what you say.2
You can find almost anything on the internet, but finding high-quality information that’s relevant to your situation can be extremely difficult.
Obstacles you’ll face include people making claims to sell you things; difficulty identifying credible sources of information that have been independently validated; and, applying the information to your unique situation.
Newer isn’t always better, especially in medicine.
Google Scholar can drastically narrow your search and help you separate an oddball theory from widespread clinical practice.
To learn more, visit the Stop Predatory Journals website.
https://predatoryjournals.com↩
This blog post by one doctor provides extra guidance about sharing what you’ve found.
Njiaju UO. “Do’s and don’ts for patients who consult Dr. Google.” via KevinMD. Oct 22, 2017.
https://mhnav.com/r/ptgoogkm↩
Now Available! A MSP-supported live course for BC residents based on the book. [Mar/2023]
While you can read it for free online, there are conditions on sharing it with others (see below). You can also still purchase copies in paperback or e-book (PDF, Kindle, Kobo, etc.).
Now Available! A MSP-supported live course for BC residents based on the book.
