“You should write this, “ Patty said to me, “You need to share this story of triumph using Google.”
I wish I hadn’t said yes.
Dr. Google
A quick search of Dr. Google on Urban Dictionary enlightens us greatly about the view of using Google to research medical terms and symptoms:
It’s acceptable to enquire of Google about your favorite Actor, your local Politician and news of the day, regardless of factual content, and build a condemning or supportive argument but don’t you dare use it look up why your child may suddenly be seizing after 3 years of typical development.
Who EXACTLY holds this negative view of patients using Google to search about their symptoms or how to treat their diagnosis? I decided, after using Google successfully to order pizza the other night, I was qualified to delve into answering this question.
First I went to U.S. National Library of Medicine under the National Institute of Health because surely there must be research studies on this phenomenon. Certainly we have ironclad, peer-reviewed studies about the use of Google as a research tool for the layman. There are plenty of articles and much jocularity about Dr. Google and the person identified with that moniker. I came up with a big zero. Nothing in NCBI about this subject. Curious. Where are authors and bloggers getting their information?
Using Google to research on Google as a valuable medical tool is like asking about positive side effects of the plague. Truthful positive responses don’t really exist, instead they are painful reminders that not everyone considers death a win. Instead, I read many of the articles that were on page 1 of Google results, because; let’s face it, the joke…
Where do things do to die?Page 2 of Google results
…is scarily accurate.
Google has been around since 1998, I first used it in 1999 and clicked on page 2 of the results a mere 18 months later. I joke. In reality though, why is that joke? Having worked in the technology industry for almost two decades, I learned a lot about what NOT to use in a search string and how those results are generated. Page hits and ‘link-outs’ play a roll. If something ‘goes viral’ it will increase its search ranking. Alternately, if no one is talking about it and you are the only source of information, your ranking also improves. Get everyone to talk about you is the actual message. Google is the ultimate popularity contest. Case in point: the top search for Saturday, July 7th, 2018 with over 1Million searches was UFC 226. I have no clue what that is and I didn’t click on it because the picture…told me all I needed to know.
Not everyone has that knowledge of search rankings and I thought, based on the articles I’ve read on Page 1, that people must be searching some pretty terrible things.
So…I Googled it.
Google: healthy source?
I found, on Page 1, The 2017 article “Dr. Google: The top 10 health searches in 2017” published in the Harvard Medical School Blog by Dr. Robert H. Shmerling Faculty Editor, Harvard Health Publishing which listed, aptly enough, the top 10 Health Searches of 2017. I thought: this should be very telling and I geared up to be amazed at the medical wonders and validate the ridiculousness of Dr. Google. I was shocked.
1. What causes hiccups?2. What can I do to stop snoring?3. What causes kidney stones?4. Why am I so tired?5. How long does the flu last?6. How to lower cholesterol?7. What is normal blood pressure?8. What causes high blood pressure?9. What is ADHD?10. What is Lupus?
Clearly, this list doesn’t read like I expected. I envisioned searches about how to remove your own pancreas. Or what does it mean when my pee is blue? This list reads like people AVOIDING going to the Doctor not people doing their own home surgery. This can’t be right based on the other Page 1 results.
I mean, I can understand how a couple of these could lead to problems for medical professionals but really, how could it be bad or overwhelm the medical system to know what causes hiccups? The number one search result for “using Google for medical diagnosis” “The Dangers of Using Google to Self-Diagnose” written by Jennifer Abbasi for Women’s Health Magazine explains exactly the problem with it:
You are suffering from anxiety, this search is making it worse and you WILL overreact and think you have cancer.
That’s the gist, not a direct quote. The article provides ways to stay calm and not overthink your searches, which is very helpful of course and much more realistic than telling people to stop Googling at all. Which is what Cari Romm of The Cut suggests in “Doctors Really, Really Want You to Stop Googling Your Symptoms”. She also points to the psychology of it:
You’re stressing yourself out.
People stress about things they can’t control, their health is a big stressor so they search for ways to improve their health and feel better about themselves. Oft times the sites they seek are made to help them feel good but not actually get better. When you Google, do so with the mindset of finding possibilities, not definitive outcomes. People are unique and respond differently, just because someone said they had success doesn’t mean they are telling the truth, especially if they are selling something.
Everyone is doing it
The Internet will always be used to search for information, and Google will lead the way. Telling people to please stop, no matter how desperate the plea, will never fall on listening ears. Any change in the defining the perfect way to use Google as a medical tool is a banner that has to be taken up by Doctors and Patient Organizations because people will use Google to find the answer to whatever question or concern pops into their head. It’s ingrained into our daily routine. We must teach people how to search effectively, because they are already searching. A movie with James Cagney comes on and I want to know what other movies he was in. or who his wife was, and when he died. Without thinking, I search for it. Sometimes I even just ask Alexa to search for that information. Internet searching is not limited to Google but the term Dr. Alexa has yet to have an Urban Defintion so we’ll pick on the giant, shall we? Really, how many times in one day do you “Google it”?
Google processes over 40,000 searches per second or 3.5 billion searches per day. Someone is Googling and it’s not all about medical information. In fact, Google estimates that 1% of searches are about medical subjects. People are not pre-occupied with diagnosing themselves.
In fact, the Page 1 search results are interesting by themselves. Authors that spoke to Doctors about the ‘dangers of Googling your symptoms’ spoke to Psychologists and Health Policy experts, no Primary Care Doctors that have suddenly encountered a flood of people wanting to use elephant urine to cure the common cold. There was, however, an Oncologist quoted in the CBS News story: “The Hazards of self-diagnosis on the Internet”. Dr. Anton Bilchik chief of medicine and professor of surgery at John Wayne Cancer Institute in Santa Monica said of his patient who came in thinking she had cancer:
"In her case, she was pretty convinced that she had something very severe," BUT “The spots weren't cancer at all. They were benign tumors that were successfully removed in surgery four days later.”
But, she DID have something that needed to be removed. It wasn't cancer but it was something, wasn’t it? Did she overreact? Yes, she made herself worry over something she had built-up in her mind as a possible death-sentence. And that confirms the other Page 1 articles about the psychology of searching your symptoms. Why did she do that? Was it the SEARCH results themselves pointing her only to cancer? We would think so based on the article topic, but, nope. From the article:
"I started to feel ... I wouldn't even describe it as a pain, more like a weird feeling in one spot of my stomach," she told CBS Los Angeles reporter Andrea Fujii. She went first to an urgent-care clinic where she had an MRI. The test showed some unexplained spots on her liver and the doctor didn't provide further detail on what exactly they were.“"He's like, 'Well, you have about three to four nodules on your liver. We don't know what they are. They could be cancer. They could be benign,'" she said.When she went home, her worry and desire to understand what could be happening led her through several Internet searches on cancer and liver cancer. The possibilities she read told her the situation could only be bad and worse.”
According to her own self-report, the Doctor she visited put it into her head that she had Cancer and she was following up on that suggestion. Her response is her natural state, heck it’s everyone’s natural state when they hear Cancer, it’s not the state of the search results. She could just as easily blamed the Urgent Care Doctor because when a Doctor makes an off-the-cuff statement like that, why wouldn’t you think about it? He said Cancer. The big ‘C’. Of course she hit on that, of course it stayed with her and of course she wanted more information.
That’s not a bad thing.
The impression I get from reading these articles is that a few Doctors that are complaining are actually feeling inconvenienced because someone is asking them a question. And patients are overreacting to information given to them. Not that they have displayed any validity to the statement that patient’s are taking ‘Google Stacks’ in on a regular basis, Doctors hate that and people are severely hurting themselves and others because of it.
We want to encourage the gathering of information. The goal is a more educated population: knowledge is vastly superior to ignorance. We don’t want to discourage learning about your health so you can make informed decisions.
The Information Gap
One of the biggest challenges for Doctors is getting their patients to engage in their own healthcare. Why is that? The patient voice is critical in the differential diagnosis. If the patient is not able to tell you what their symptoms are, we can never know that that he or she has a sharp pain in their neck.
When we break it down: Doctors provide a possible diagnosis initially and work toward a positive diagnosis eventually. Sometimes the diagnosis happens in one office visit and, other times, there needs to be many follow up visits and tests. Regardless of the time to diagnosis, we first have to understand the manifestations the patient is describing and then build the case for what could be the underlying problem. To argue against Google as a valuable tool to help us accomplish this is to argue against collaboration with a patient. Say that out loud and you will understand how ridiculous it is to tell someone NOT to Google for a medical explanation. You are arguing against a patient, who is interested in finding out what is happening and learning more about their condition, and that's why they came to the Doctor; they want answers. When we think of Google searching by patients in this way we realize that Number 7 (What is normal blood pressure?) most likely prevents overreaction and multiple trips to the Doctor.
In the Article “10 Questions Doctors Wish Their Patients Would Ask” by Amir Khan a Health + Wellness reporter at U.S. News the number one thing Doctors want you to ask is:
“I Googled my symptoms, but what do you think?”
Wait, that means they don’t actually mind you searching and they want to encourage you to bring it to them for discussion? But that’s contrary to what we are being told by Google itself! Which one is correct? DO Doctors hate patients bringing in ‘Google Stacks’? Are patients being made to feel they need to stop investigating their own health?
Doctors don't want an uneducated patient that doesn’t freely communicate; they want you to trust their opinion as much as you trust Google. They want you to tell them how you feel, both physically and emotionally. They WANT that knowledge.
Can Google be trusted? Yes. It can be trusted to show you the top search results for what you entered into the search box. That’s it. It cannot verify the veracity of what you read, it is not a filter of truth and justice, so that’s on you.
You must familiarize yourself with the more trustworthy sites. Sites that have science behind their claims, not sites that tell you how to cure yourself. I hate to point this out to you if you haven’t already noticed, but snake oil salesmen didn’t go away, they bought URL’s and moved online. You have to be careful whom you trust. If you trust your Doctor (and why wouldn’t you if they have become a part of your team) then why aren’t you taking these things to your Doctor and why wouldn’t your Doctor be willing to discuss them?
Let’s examine this: if the patient brings up a possible diagnosis why would a Doctor not entertain the possibility of an answer and therefore a solution? Also, when a patient presents a misconception he or she read on the Internet, why wouldn’t we want to dispel that myth? Why wouldn’t we want to get the correct information out there sooner, rather than later? It WILL come up at some point. Let’s address it now and move on. If it’s correct, then hooray for earlier treatments and reduced visits. If it’s not, it cost a few minutes and it’s something to check off the list of possibilities. Doctors want to cut to the chase and move forward using, or not using, elephant dung as a cure for goiter and the common cold.
Our own favorite Doctor once wrote this for a symposium we presented at:
“In this age of technology and digital social connections primary care physicians should be willing to embrace the idea of networking for patient care. Even specialists sometimes have a hard time with this type of coordinated care. The hard part for physicians in a busy practice to wrap their minds around is the fear that this is going to take a lot of time. If I can read a couple of articles, understand the science and contact the principle investigator to get the family headed in the right direction then I have perhaps saved some unnecessary visits, studies and aimless wandering. This is frankly our job as primary care physicians, to take a broad differential and narrow the scope of possibilities to provide definitive treatment or a logical path to follow to get a diagnosis. As we are talking about rare diseases we should realize that this extra effort will usually only be required in the minority of patients. We should also realize that this extra effort will make all of the difference to the families we care for.”
We love him. I will make sure we name a grandchild after him.
The PricewaterhouseCoopers Health Research Institute listed the number 1 thing patients look for in a practice is Transparency. PracticeBuilders.com details what patients express about transparency:
“It is acceptable if a physician does not know everything about their illness or diagnosis, but patients expect their doctors to share as much as possible. Uncertainty is okay, as long as patients are aware of the truth. Also, patients understand that doctors are humans, too, and that medical errors do occur. While patients usually never demand retribution, they do want a confession of the error and an assurance that the doctor is trying to fix the error. You must always educate your patients on the success rate and the risks involved with related procedures.”
This is encouraging to read. It appears that we are slowly moving toward admitting we are all human and we all want forward momentum and not dwell on the failures so much as work toward successes. That’s a pretty mature stance that would provide true collaboration and partnerships. We are all human and we all make mistakes but when we admit our failures and learn from them, lives are changed for better.
We’re on the same team
We’ve established that Doctors aren’t really that upset about patients researching, and it actually may help them along nicely toward finding a treatment. We’ve also established that patients aren’t tremendously interested in diagnosing themselves but understanding that diagnosis or treating it themselves. ‘Local honey for seasonal allergies’ was suggested to me by my Aunt over two decades ago, I found it on Google last week. Cool huh? My Aunt knows nothing about seizures though, I asked.
The fact is that people will always use Google to search for information. We should ensure that patients have the information they need. If they can’t get that in the office they WILL go online to find it.
Recently, I heard a patient organization leader make a statement that went like this:
We need our patients to stop using Dr. Google.
And she rolled her eyes. Everyone in the room laughed. I smiled at first and then thought: oh wait, she’s serious! What a spectacularly bad idea! You want to encourage your patient population to seek knowledge about their condition, you want to provide that information when you can, but you don’t want them to use Google to find it?
Of course people are going to use Google. As a patient organization leader I count on it. I had to have missed her point. Was she saying: “Don’t search for your symptoms. Let me tell you what your symptoms are? “ Because, how does that work? People Google. Internet research is part of the scientific method in fact. What you need to do is not mock people for looking for answers. Stop using the phrase Dr. Google when someone is looking for answers online.
As a patient leader, I need to make sure they get the correct information about their condition. I need to teach them how to decide what information they can trust, what information they should file away for future use and what information they should never bring up in mixed company. I need to always be available to help them find answers and encourage them to discuss that information with their Doctors. When I asked my KBG families what was the first thing they did after they received the diagnosis, 90% Googled ‘KBG Syndrome’. And they found our Foundation because when I searched for it years ago I found Genetic Home Reference with very little information on it and we decided to change that. That is how Google is used and that is why I need to ensure the KBG Foundation is on Page 1. I need to build collaborative teams of patients and Doctors and not create a chasm that only I can fill. Rare diseases seldom have comprehensive answers and all hands have to be on deck to find those answers. YOU have to provide the information people are searching to find not condemn those who do. Last year, we updated the Genetic Home Reference page with more accurate information. That was a wonderful day.
It felt to me like this leader had disdain for her patient population and felt that only she and her team had the answers people needed, even if the patient didn’t know what it was they needed.
Still, I ruminated on what she said for a while and could not understand why a Doctor-respected patient leader would laugh at using Google as a research tool. I asked my other rare friends about it. Guess what? They ALL Google too. Even the Doctors. Who knew?
It’s not funny when you are encouraged to stay ignorant. No relationship is healthy when it’s based on co-dependency. It’s strength through collaboration, and the greatest tool for collaborative information is the Internet and Google’s marvelous search capabilities.
One of my friends, who also happen to be a nurse, made this statement:
“I think the main thing to remember is that Google is a tool but not a medical license. Like a dictionary can tell you how to spell a word but won't necessarily give you the meaning behind a passage in a book. Doctors do a lot of training and have a lot of experience that can help them put the research into perspective. “
Not all sites are created equal
When you do a typical Google search it’s pretty easy to pick through the results and decide which is most valuable to your need. With a medical search the results can be less than clear and concise, especially if they contain medical terminology. An easy way to know what sites are legit research-based sites is the domain.
.gov
.edu
.org
These domains are reserved for only certain entities. Usually that means a higher level of trust can be placed in the information contained therein.
The world-renowned Johns Hopkins Hospital has some fabulous guidelines for good searching. First: Use their search tool instead of the entire Internet.
I entered KBG Syndrome.
<crickets>
And promptly returned to Google where I actually received results.
While their (Johns Hopkins) database doesn’t know everything. Their other suggestions are great though:
Check to make sure the information has been updated recently; anything over 3 years old could contain outdated information.Check the credentials of the author(s).
If the site pushes one idea, or a self-serving concept, leave it and move on. Look for the science!
Patient organizations are a great place to find emotional and sometimes financial support for your condition. There may be several sites for your new diagnosis, I always prefer the nonprofit over the for-profit sites and check them out on Charity Navigator. This may not always mean they are the best support but it will help determine how focused they are on community service.
Private groups that are the most beneficial are those that provide positive and yet realistic support. If the organization or its admins are constantly at the center of contentious conversations and encouraging aggression, this is not conducive to a healthy approach to collaboration. Find a group that supports one another and shares willingly to achieve a central goal. Make sure that goal aligns with your ideals. It’s not a competition, it’s a collaboration to find a cure.
The one where lives are changed
The story that got Patty Weltin of Beyond the Diagnosis so eager to get me to write this is the one I tell about our son’s first diagnosis, the use of Google to discover it and the impact it’s had on others outside of our family.
In 2011, after 6 years of typical test results we finally got the one test we had asked about for 6 years and was told wasn’t necessary: a lumbar puncture.
That test result showed he had low levels of a major neurotransmitter: 5-MTHF. The official diagnosis for this is Cerebral Folate Deficiency (CFD). As we sat in the Doctor’s office trying to Google CFD, I asked the Doctor:
What causes this? Is it genetic?
He said: Could be a lot of things, but the important part is there is a treatment.
Okay, but what caused it? We couldn’t let it go. We started the treatment, Follinic acid, that night and it was nothing short of a miracle. Our son slept through the night for the first time in his entire life. We awoke and asked each other: Did you put him back to bed? Nope. He was in bed and he had not seized.
The next thing we discussed was WHY this happened, was this standard with CFD after treatment? Because with our boy things change rapidly all the time. We expected failure even with success. And so we both Googled and sent each other case studies, back and forth, all morning. In the middle of the day, I found the paper ”Cerebral folate receptor autoantibodies in autism spectrum disorder. Frye RE, Sequeira JM, Quadros EV, James SJ, Rossignol DA. Molecular Psychiatry. 2013;18(3):369-381. doi:10.1038/mp.2011.175.”
I sent it to the husband and he agreed we needed to present it to our Favorite Pediatrician.
A few days later, I sheepishly handed the good Doctor the paper and asked him what he thought of it. He took the paper, read the paper and said:
“I like him for this. Let’s get him tested.”
Well, that was easy. I breathed a sigh of relief. This paper, if he tested positive for Folate Reductase Autoantibody, meant we needed to dramatically increase the Follinic acid. If he had this autoantibody then it was still blocking at least some of the medication. Doc picked up the phone, called the lead author and emailed me the instructions for testing before we left his office. Weeks later when we received his email with the subject line:
“Yep, He’s got some!”
we high-fived each other and prepared for a change in plan. According to the author’s suggestion, we upped his medication and I scheduled an appointment with one of the other authors of the paper to tailor his treatment further. The appointment was an entire year later so his wonderful Pediatrician agreed to oversee what he could.
Months later we had a follow-up appointment and when we walked in, the Good Doc saw us and called out: "There she is! Hey! Come over here."
We walked over, hugged our hellos and he introduced me to the other Doctors in the practice who all made pleasantries and then asked questions about the Folate Reductase Autoantibody. I happened to have another copy of the paper on me so I handed it out. It looked cool, even though it was for his school teacher who was not there that day. I was all: BAM! There ya go. Slick. It was slick.
After we finished the appointment, the Doctor told me something that made me cry and made me realize how important our son is to the world and validated why we always need to do our own research.
He told me that he was so sure this autoantibody was a big player in Autism that before he even ordered a lumbar puncture for his patients, after presenting the concept to the parents, he put 3 of them on Follinic acid. Follinic acid is an analog folate, anything not used by the body is secreted and no one is the wiser. If it works: great things happen, if it doesn’t then it doesn’t and your body does away with it. Two of the patients were doing so well, they were no longer on the Autism Spectrum. They were no longer on the Autism Spectrum. The third was doing very well and may soon be off the spectrum as well. He told me that our son and our research have literally changed lives. He told me that one of the Mothers wanted me to know that we saved her most precious valuable: her son and she wanted to thank us.
I put my hand on my boys shoulder and he looked up at me. I thanked the Doctor, hugged him again and went out to the car and cried. A good cry, a cry that meant all the battles we had up to that point, all the seizures and the heartache had a positive impact. I cried that I had the brass to use Dr. Google and take it to his Doctor who took me seriously.
So, stop saying Dr. Google and maybe I’ll start taking you seriously.
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