Note: This is a rough transcript of episode 26 of Health Savings News and has been lightly edited for clarity. It may not be in its final form.
Hello and welcome to Health Savings News, the podcast about healthcare costs in America and how to save money on the often expensive care all kinds of people need. I’m your host, Evan O’Connor, joined by retired doctors Rich Sagall and Mike Woods. Each episode we discuss healthcare costs in America, offer tips for saving money, and relevant news that affects and reflects the expensive landscape of healthcare in America.
This week’s topic is the issue of internet-based medical information. Specifically, we’re going to discuss seeking and using medical information to make a self-diagnosis by searching the internet for possible causes for your symptoms. The most common reason for this is trying to avoid healthcare visits due to the high costs of healthcare, especially for those with poor or no health insurance. However, in many cases, it ends up costing more in the long run than seeking medical advice or a healthcare provider when the symptoms become apparent.
Yeah, I remember when I was in medical school about 42 years ago we had a condition called “medical student disease.” It usually involved one or more of us, depending on what commonplace symptoms we had that day, wondering if we had the disease that we were studying. Well, when we got into enough detail about the diseases, we realized we overreacted and we all had a little laugh about it. In the age of the internet. That effect is now extended into everyday life. Anyone with an unexpected symptom can now search the web in an attempt to explain those symptoms by using “Dr. Google.”
Before we go any further, we should define what we mean by the term Dr. Google. Dr. Google is not a specific website or tool. Dr. Google refers to the entire mass of health related websites that pop up when a Google search is done for a specific term, diagnosis, or collection of symptoms.
Now, using Dr. Google is quite tempting because the internet is full of medical information. While most of this is pretty accurate and current, much of it is inaccurate, out of date, misleading, can even be quite biased, can be real hearsay, or even blatant advertisement. Moreover in medicine, some weird sounding things actually work. I remember hearing that fecal transplants for clostridioides difficile (c.diff.) infections was quite effective. At the time I first heard it, I thought that it was absolutely ridiculous. Come to find out five years later, it is now the standard of treatment for c. difficile associated diarrhea and the perfectly logical treatments that we’ve been doing for years may not be effective, such as the antibiotics that most of us use for ear infections for decades, we’ve now discovered that it doesn’t really help
People use Dr. Google for two reasons. First, to learn about a disease or condition, and second, to diagnose a current problem, which could include trying to confirm or second guess their healthcare provider’s initial diagnosis. While accuracy is a problem with a lot of the online medical information, the major problem is that too many people use Dr. Google for self-diagnosis without having the experience or guidance of a healthcare professional. Dr. Google is not very dependable for those without experience. An even bigger problem is self-treatment when people act on the information that they find, studies have shown that self-diagnosis using Dr. Google can be wrong up to 42% of the time. This means that the correct diagnosis is not included on the top 20 possibilities on the diagnosis list created by the software. While seeing the diagnosis somewhere in the top 20 occurs up to 75% of the time, only about 25% of the time the results are the correct diagnosis. Usually because the diagnosis happened to appear just on the list. Compare this to the healthcare professionals accuracy, which ranges up to 95% of the time.
Yeah, the reason that it’s hard for most people is that it takes years and years of training and experience and refining of clinical skills to make an accurate diagnosis. What those of us who are experienced healthcare providers understand is that while many symptoms can be the result of a wide variety of illnesses, both mild and severe, common things still occur commonly. There’s a saying in medicine in the United States “when you hear hoof beats, think of horses not zebras.” Healthcare providers also understand that context is crucial in making the diagnosis. There are many important factors to consider with making a diagnosis that the untrained would not know to do, such as getting a history of the symptom, not just the symptom itself. And this includes the events prior to the symptoms such as a fall or being at a large gathering. The nature and severity of the symptoms is also important as how much they affect your daily routine. A symptom that affects your daily routine significantly is much more likely to be a severe disease that you would need to be seen for. We also look at any associated symptoms and physical changes that we can see on examination. There’s a whole host of other factors that physicians considered such as family history, travel history, and even what time of year it is that I’ll go into making the diagnosis.
A few years ago I had a younger coworker who was experiencing chest pain after falling down while running. Since they had no health insurance, they were concerned about how much healthcare visit would cost, so they consulted Dr. Google. I observed as they searched the web for answers, and as you might expect, most of the possibilities they were presented with were some form of heart disease which is very unlikely in someone that was that young. As a physician, I knew he simply had an inflammation of his rib joints called costochondritis from the fall. But until they asked me for my input, I can only watch as they became more and more anxious.
Another situation that comes on because of Dr. Google was common in pediatrics. As a pediatrician, one of the most common symptoms we encounter is fever. For us, it can also be one of the most difficult symptoms to find an explanation for. In fact, much of the time we didn’t have an answer and eventually had to chalk the fever up to a viral infection. Since many serious diseases in children also begin with fever, it was quite common for parents to come in fearing the worst after even a brief internet search of the causes of fever. So I spent a lot of time reassuring parents that most diseases that began with a fever are not serious and that it was unlikely that their child had one of them.
So let’s look at the two major problems with using Dr. Google for self-diagnosis. The first is what Rich has already mentioned is that Dr. Google really isn’t up to the challenge and that it is actually more likely to give you an incorrect diagnosis, then identify the correct diagnosis. Once you’ve made that diagnosis, it’s incorrect, there are multiple hazards that can result from that, many of which, as Evan said, are more costly in the long run than a healthcare visit. When the symptoms became problematic would’ve been.
As Mike mentioned, there are many limitations that you should be aware of when making a Dr. Google based self-diagnosis. Search results are very dependent on the search terms that are used and how they’re used. Google searching is really a skill. The term GIGO, garbage in garbage out, applies to Google searches. The way non-medical people use terms may be different from their medical meaning. Search terms used by non-medical users may not bring up reputable sites written by healthcare professionals using more precise medical language. For example, searching for dizziness when experiencing the room spinning will produce different results than the more specific term vertigo. The results are more likely to be about lightheadedness. How the search string is phrased can either limit or overly broaden the results. For example, if you use, “why do I have a headache?” and it’s search without quotes around the terms, the engine may not even recognize it as a question and search the individual terms.
Yeah, these search engine protocols have a very limited ability to prioritize medical information. As a matter of fact, increasing use of Dr. Google has resulted in rare diagnoses coming up more common than more common conditions. For those without experience, this actually can quickly lead down a rabbit’s hole to despair as their searching covers more and more rare and serious conditions.
The probability of a given website to be ranked high on the results is based on many factors, and you’d be surprised to learn that most of them are not related to the relevance, accuracy, or usefulness of the information on the site. Here are some of the more likely criteria for ranking websites the search engine used is probably the primary one, and you can find that the same search term used in a different platform may result in an entirely different list of possible diagnoses. Your results are also very dependent on your search history and location. The computer knows what you’ve searched for in the past and where you are and can give you results based on that information. The site itself can be prioritized if it has a higher number of hits from previous other users visiting the websites. It will have more hits if the number of connections to other websites is higher, and it’s also prioritized if the number of times your search term appears in the website’s content is frequent. It also depends on how long the website’s been in existence and when it was last updated, and what organization supports the websites. Again, you’d be surprised to learn that some organizations have actually paid for their website to have high rankings on search engines, products that are being sold. Again, also related to your search history. You could get sites that are prioritized based on what products you’ve searched for in the past, and you have to remember, not every website is useful nor can they be trusted equally. So whether it’s the reliability, the information, the details of the symptoms, protection of your privacy or inherent biases associated with all the illnesses, you have to be careful when you’re looking for medical information on the internet.
We can’t overemphasize the importance of what Mike just said. I’ve seen some information from what you would assume to be reputable sites with big names in medicine that is wrong or inaccurate or unproven. So you have to be very careful.
There are a number of websites that have symptom checkers that provide possible diagnoses when one or a number of symptoms are entered. You have to be aware that the accuracy of some of these checkers is very dependent upon the search terms used. Although they may do a better job than Dr. Google at prioritizing the most likely diagnosis, they can still be misleading. And again, because the results don’t account for other factors healthcare providers use when making a diagnosis. As with different search engines, the various symptom checkers give different results for the same symptoms.
I also want to mention a new doctor on the scene, Dr Chat, the artificial intelligence chat bot ChatGPT. Many people are now using that to generate information about health and it has its own problems. So again, it’s buyer beware.
Yeah, the World Worldwide web can really be a free for all. There are many websites where anyone can contribute anything. So looking for medical information is very much a buyer beware situation. Much of the information on the internet is anecdotal, interesting, but possibly not reliable. This can especially be true of social media sites and alternative and complementary medicine sites, but can even be seen in reputable patient education sites and even medical news stories about traditional medicine. The ability for so many people to contribute has resulted in an overwhelming amount of biased, unproven, misleading, and even just incorrect medical information. Much of this is posted on social media sites, blogs, forums, and chat rooms that are not monitored or reviewed by qualified healthcare professionals. So when you’re looking for medical information, it’s really important to keep in mind that medical information is much more likely to be misleading, anecdotal, or inaccurate. If it is poorly referenced or written by unqualified or unidentified authors. The article or information is dangerously out of date that the article is obviously personal opinion or biased because it’s being given with a celebrity endorsement or being touted by some self-proclaimed expert. Information that’s too good to be true is probably inaccurate or misleading. And you can, you’ll also find that a lot of the medical information is actually a sales pitch, and you’ll find that the website may contain content specific to an organization or product, and you may even find links to buy their products from the website itself.
One more criteria you may wanna be aware of is if the cure treats multiple different conditions or diseases, then it’s most likely not to work for anything.
Not surprisingly, the less accurate the information on the web, the less likely is for you to find a correct diagnosis. This does seem intuitive, but somebody did a study about it anyway and found that when asked to make a theoretical diagnosis based on a symptom or, or other information, people got the correct diagnosis about 43% of the time. When you examined further, they found that if the information used was inaccurate or misleading the diagnosis was reduced significantly the 23%, and again, not surprisingly, if correct information was used the ability to make a diagnosis was higher.
Rich has already mentioned that the most problematic thing about Dr. Google is using the information for self-treatment, and this is most concerning where health wellbeing in your actual life are at stake. So for people choosing to act on the results by treating themselves a study found that Dr. Google gave inappropriate advice in 20% of emergency situations, 45% of non-emergency situations were a medical visit would’ve been appropriate, and in 67% of the situations that could be treated at home. The last one doesn’t sound dangerous, but it is and we’ll talk about this later because there are more options for people to be treating themselves at home than there ever have been.
Even if presented with accurate and appropriate information, the complex nature of much medical information can make it difficult to interpret and hinder a person’s ability to make an accurate diagnosis, especially if not presented in a way that the user can understand. Much patient education information is written in a complicated manner, especially when written by healthcare providers. It may be full of medical jargon and difficult scientific concepts. Users may come across scientific research and medical journals and other information written for healthcare providers that can feel like reading a foreign language or an advanced textbook. Even medical news reporters who may present the information in an easier to re manner can have trouble understanding some medical information and interpreting scientific research leading to misleading information. It takes a lot of experience to distinguish between high quality and low quality information. Even an anecdotal experience, opinions, marketing efforts, and blatant misinformation can be difficult to recognize. Another important factor is that doctors will observe the patient and may include some of the observations in the process of making a diagnosis, something that the patient would not do themselves.
Just to summarize it, the problems that can result from people using Dr. Google to make a self-diagnosis are done to avoid seeking medical care, second guess your healthcare provider, or as a way to seek alternate treatments. When Dr. Google has resulted in a misleading or misdiagnosis, over time the lack of treatment results in increased severity of the condition by delaying the appropriate treatment. It can be further delayed by those who have difficulty letting go of their self-diagnosis after seeing their healthcare provider.
A fairly recent term is cyberchondria. It’s a form of illness anxiety disorder that was formerly called hypochondria that was coined 20 years ago, and is defined as a person who compulsively searches the internet for information about particularly real or imagined symptoms of illness. While there are many environmental and innate factors that increase the risk of illness, anxiety disorder Dr. Google’s limitations are increasingly fueling the fire. Since most bad diseases have mundane symptoms, it’s easy to be convinced that there is something serious going on, especially as the symptoms are searched over and over again. This creates a vicious cycle that is created when anxiety leads to additional searches, more anxiety, and making people even more convinced that they have some terrible disease. Most of us are susceptible to it, but some people are much more prone than others. Severe anxiety can happen to anyone, but especially people with anxiety disorders or obsessive natures who are even more susceptible to the anxiety from Dr. Google. Even if reliable sites are initially consulted, it’s possible to go deeper with every additional diagnosis or unreliable site that’s found. The more websites consulted, the more likely you are to prioritize rare diagnosis and become increasingly anxious.
Forums on moderated chat rooms, Facebook, Twitter, or Instagram posts and other spaces where personal experience with medications and treatments and doctors are discussed or another possible source of anxiety. Google’s very effective at finding them. Anything can be posted on these types of sites and it can be difficult to separate fact from fiction. Social media platforms are much more likely to feature testimony from those that are having difficulties with medication or treatment who are really in the minority and, and not see postings from those who are doing well with proper treatment. There are websites that you can use such as Patients Like Me or disease specific organizations like the American Cancer Society that have moderated chat rooms or forums where healthcare providers are available for professional consultation and to moderate the content of the site to make sure that it’s accurate. So before becoming anxious about possible diagnoses, stop and consult your healthcare professional. As we say, we’ll keep saying that over and over again. Don’t try to do this yourself. You really have to do this along with your doctor to avoid getting into deep trouble.
In the past, we’ve already talked about excessive testing when presenting with an illness, and this problem is worse when unnecessary testing is done to rule out conditions as a result of Dr. The Google searches. And this occurs when people cannot be reassured by their healthcare provider. It’s important to remember that almost all tests have the potential to cause harm. Whether the diagnosis is correct or incorrect, there can be adverse consequences when people be in treatment of their self-diagnosed condition without consulting a medical professional. If they are fortunate, only consequence will be wasted time and money on treatment that doesn’t work and is not necessary. If they’re not fortunate, the treatment could make their condition worse and result in significant side effects or complications. This is especially true as more potent medications become available over the counter.
Since the podcast is about the cost of medical care, we have to stress here that self-diagnosis can be quite expensive, especially when incorrect diagnoses are made, and for the most part, a lot of this is unnecessary expense. Now, if Dr. Google has indicated there’s a treatable disease, unnecessary money can be spent on frequent visits to healthcare providers, especially expensive emergency rooms, additional testing, impossible, incorrect, or unnecessary treatment. This is especially true if Dr. Google has arrived at the diagnosis of a severe or rare condition that has resulted in a severe anxiety, which is often not relieved by the healthcare provider. Ultimately if the diagnosis is less ominous, Dr. Google can lay out an unneeded and overly expensive treatment plan involving over-the-counter medications including some of the new, more potent ones and/or unnecessary services. This may end up costing much more than a healthcare visit and appropriate treatment plan covered by insurance would’ve been if the healthcare provider was consulted initially. Self-Diagnosis can also result in lost wages from too many medical visits or from an untreated illness that has become severe enough to prevent working. Many websites providing medical information are linked to commercial interests. Again, something you have to be aware of. Even some of the best patient education websites contained advertisements, even some that sell or advertise products for the condition being described. It can be really difficult to resist the temptation of buying these products from these websites, especially sites sponsored by the manufacturer or when the product is available directly from the website.
Your relationship with your healthcare provider is a partnership with individual and shared roles in responsibilities that are important to define, nurture, and evolve. Depending on how the internet is being used, this can either help or hinder. Many patients think of the internet as an additional source of information to support their healthcare provider’s decisions and enhance their relationship. When asked, most healthcare providers would definitely agree with that, but within reason. While healthcare providers faced with internet medical information may go over relevant information with their patient, they really don’t have the time to sort through a large volume of information to find the relevant information and correct any misinformation picked up from the internet. You could force them into doing this, but it does become a conflict and will affect the partnership. For those that do this without their healthcare provider’s involvement, they may begin to value the internet to provide information above that of their provider, causing them to ignore healthcare providers advice and further damaging mutual trust between doctor and patient. Collecting information, especially using symptom checkers, may backfire when patients are too overly confident about their self-diagnosis before they see their healthcare provider to diagnose them properly. This also results in a significant conflict with their healthcare provider when they disagree over the diagnosis and treatment, and the issue can now not be resolved between the two of you.
Mutually beneficial option for the use of the internet is for providers to guide patients to reliable healthcare information websites after seeing the patient. Health literate patients who are able to find accurate and relevant information can improve their provider patient interaction in their outcome just by being more knowledgeable about the disease and easier conversations with the healthcare providers. So if you’re careful about using the internet as it should be used, we can have doctors and patients return to a situation where they both are better prepared to discuss medical information.
From the technological side, when a webpage is visited a footprint is left that can be found by many third party tracking online users. Personal data and volunteered medical information can be collected or even sold when seeking information on the internet about a health condition. Since there is little regulation, information can be used for many reasons, such as targeted website ads.
Websites collect and handle personal information in different ways. They can track what pages are being looked at and may use it to determine what pages and types of information they want to present to users. May ask to users to subscribe or become a member, which usually involves providing personal information. Most credible websites collecting this kind of information should spell out exactly what they will do with it and what they won’t do with it. Many dot-com sites sell aggregated information about their users to other companies, usually demographic information. In some cases, they may collect and reuse information that may allow users to be identified, such as zip code, email address, and birth dates.
This is especially important depending on where you live when seeking an abortion. Companies may provide data on abortion related searches to law enforcement that can leave patients, their friends, and healthcare providers at risk of criminal charges when trying to access essential healthcare. This could easily extend to other targeted essential healthcare services, such as gender affirming care.
To keep your digital footprint secure, choose a separate browser with hardened privacy settings. Browsers like Brave, Firefox, and DuckDuckGo or healthcare apps like Euki have easy use options that come with hardened privacy settings. It’s a good idea to look into the preferences menu of whichever browser or apps you choose and raise the privacy settings even further. It’s also a good idea to turn off your browser’s features to remember browsing history and site data and cookies.
With all of the risks we’ve discussed in mind, it’s also really important to have options when you have a healthcare provider who won’t listen to you about your experiences or consider how you’re feeling. The experience of having a chronic illness go undiagnosed for years is all too common, especially for women and people of color. Do not be reluctant to discuss concerns or assert yourself with your doctor. Take notes of your symptoms or use apps that track how you’re feeling and have prepared questions written to ask your healthcare provider. Learn about the types of screenings that should be performed routinely for patients of your age, gender, and race. If they refuse to do the relevant routine screenings, seek another medical practice that is more conscientious and aware of why different genders, ages, and races have different medical concerns. However, don’t demand specific tests or treatments for some rare disorder you have not been diagnosed with. Instead, ask for help in dealing with your symptoms politely, yet firmly, if necessary. If your symptoms are being ignored, ask “what this might be” or “what else might this be?” if your symptoms are being passed over as innocuous or related to a previously diagnosed condition. You can follow up with “what do I do if the symptoms get worse?” if to help your doctor stop and consider your options. If your providers doesn’t seem to be able to diagnose the issue, you can ask for a referral to a specialist or a different practice for a second opinion, especially if your insurance requires it beforehand. And if you feel as if your healthcare provider is consistently ignoring you as your symptoms progress, you should find a new practice. Unfortunately, this is incredibly stressful, especially if you’re experiencing unexplained symptoms or are struggling financially.
The last segment of each episode, we discussed it with the culture, art, entertainment, social causes we’ve been engaged with to each other and our listeners. This week I’m suggesting the podcast Boom! Lawyered from Rewired News Group, hosted by Imani Gandy and Jessica Mason Pieklo all about the latest legal battles around abortion rights, transgender discrimination, and racial justice to help listeners stay informed, stay angry, still laugh, and fight back.
Thank you so much for joining us for this episode of Health Savings News. If you’ve been listening to every episode as they come out, you’ve been listening to us for a whole year, thank you so much. Please subscribe, rate, and review us on Apple Podcast or wherever you’re listening to the show — it really does help. You can follow @NeedyMeds on Facebook, Instagram, LinkedIn, YouTube, Mastodon, and you can follow @HealthSavingPod on Twitter (for as long as Twitter remains around) for updates specific to this podcast and send questions, comments, and topic suggestions to email@example.com. Our music is composed by Samuel Rulon Miller. His music can be found at musicisadirtyword.bandcamp.com. The Health Savings News podcast is produced by me, Evan O’Connor. All the sources we use in our research can be found in this episode’s podcast description on our website or your podcast of choice. Health Savings News is not intended to substitute professional medical, financial, or legal advice. Always seek the advice of a qualified healthcare professional or appropriate professional with any questions. Views expressed on Health Savings News are solely those of the individual expressing them. Any views expressed do not necessarily represent the views of Health Savings News, other contributors, the NeedyMeds organization or staff. Thanks again for listening. We’ll see you in two weeks with our next episode.