Dr. Google: Tips for patients who diagnose online

Dr. Google: Tips for patients who diagnose online

For practicing physicians, there’s a tricky balance in believing that the Internet can help save lives.

I’m a doctor who encourages families to look up health info online and one who believes technology will afford improved partnerships. Yet, when we’re in the old-fashioned exam room, there isn’t always a place for the Internet. Many clinics block video-streaming sites and don’t allow for traditional email exchanges between clinicians and patients.

It’s hard to “send” patients information discussed during the visit. In the 10 or 20 minutes we have together, time is precious. Truth be told, health care remains wary of doctors and patients communicating when they’re not in exam room. Most insurers won’t reimburse or pay for electronic communication between patients and their clinicians. So doctors are often forced to bring you into the office to provide expertise. New data may help change this paradigm. Reality is, many of us are using the internet as a tool for health care.

For at least 1/3 of American adults, the internet is a diagnostic tool

Yet, it’s not just insurers who may be wary of online info. Recently I read a patient review (online) from a parent who was frustrated I’d encouraged them to read the content on this blog. The comment implied that perhaps I was “pushing it.” And that’s the tricky part–when I first started writing this blog I was bashful to mention it in clinic. I wanted patients to feel comfortable NOT pressured. But now that I have over 350 blog posts showcasing research and pediatric health information it’s tantamount that I share it.  I mean, if I’m in the midst of a 15-minute visit and we touch on topics like getting a carbon monoxide monitor, the choking game, the Tdap shot, and the effects of TV on their kid’s developing brain, how could I not augment a parent or teens’ understanding by offering more information online?

Numerous studies find that what parents learn in the exam room with doctors isn’t retained. That’s where Dr. Google comes in.

Like any other pediatrician, I want parents to know as much about their children’s health as possible. The internet is another tool. I firmly believe the future job description for primary care docs will include filtering and offering up great online sites for parents to read about, search, and ask questions about their children’s health. Thing is, many people are using Dr. Google before the visit.

Dr. Google and going in to see the real doctor

New information from The Pew Internet & American Life Project showcases some realities about our relationship with “Dr. Google.” The Pew surveyed over 3000 Americans, inquiring about their relationship with health information seeking online in the previous year. Some of what they found:

  1. One in 3 U.S. adults (and nearly 1/2 of college-educated adults) use the internet to diagnose themselves or someone else they care about. After these “online diagnosers” have finished a search, their clinician is more likely than not to confirm their suspicions. So it’s not just that people go online to diagnose a medical problem or concern, they take what they learn online and head in to see their physician. Nearly half (46%) say that what they find online made them feel they needed to see a clinician. Further, 41% of those that went into the doctor’s office had the diagnosis they found online confirmed by their physician.
  2. Women are more likely than men to go online looking for a diagnosis for themselves of a loved one. You’re also more likely to go online to diagnose if you’re a young adult, white, have a college degree or live in a home earning more than $75,000.
  3. There are some issues though, outside of the obvious concerns for quality of information. One in 4 people looking online for health info report they have hit a pay wall. This means patients are blocked from information they’d  like to see. Some can go on Twitter and ask a clinician to send the study of interest, but not most. Of those that get blocked, surprisingly 83% of people who couldn’t get into the medical research they like continued to look for the information elsewhere. Turns out all of our late-night online searching has made us resourceful online diagnosers!
  4. Seventy-seven percent of people reported using a search engine first for finding out about a potential diagnosis. Only 13% of people went directly to a health site first (something like Seattle Children’s, MayoClinic.com or WebMD). And not surprisingly only 1% said they surveyed their social network (Facebook) first.

To be honest, nothing about this data surprised me even though The Pew mentions this is the first time anyone has measured these findings in a straightforward, national survey.

My clinical practice and experience is likely skewed (by age, education, socioeconomics, and race). The number of people who reported going online to diagnose (35% overall) seemed lower than I would expect. Most parents whom I talk with in clinic have been online to read about their child’s development, their immunizations, their sleep, or their diet at some point. Many new parents do significant amounts of reading even before the baby arrives! In my opinion, we forget that when we’re reading about prevention strategies (safe sleep, vaccines, ways to feed a baby, ways to protect them from chemicals, ways to avoid the “flu,” etc) we’re reading about health. Often people think about health care as only problem resolution—we only think we’re doing medical “research” online when we’re curing illness/anxiety/pain. In my world prevention is key. The internet is one of those keys.

Online search with Google

I wasn’t surprised to see that 80% of online diagnosers used a search engine (Google, Bing, etc) first when looking for a diagnosis. We’re impatient and busy–search engines provide rapid responses–no wonder we all start there! Even in the exam room with patients, I often will start with a search engine when a family and I seek to find information.

I think the complexity and trick of serving patients well is in the next step, what comes next–AFTER online diagnosers peruse the search engine results–which site you click on next is telling and likely will have lasting effects on the quality of information you find. That’s where we physicians need to be useful—we need to help our patients know where to go for quality, research-based, data-backed advice.

Parents learn much about their children online

Most parents learn about their children’s health outside of the pediatrician’s office. I think it’s more common that a parent looks things up online when worried about something new like a lump on a infant’s head or a new rash. In my experience nearly 1 in 3 or maybe 1 in 2 of my patients will tell me they have been online in those acute care type visits.

Contrastingly, in acute care visits for things like cough, ear infection, or colds parents rarely report that they have been online.

Tips for “online diagnosers”

  1. Keep a breadcrumb trail as best you can. When we’re online we forget where we go and often don’t know who we’re listening to. Confusion comes in when families don’t remember where they have been garnering information and when they become confused by myths, personal anecdotes, and stories that lead them astray. Everything on the internet is clearly not in our best interest as parents. One solution: print things out or refer to specific links with your physician when you’re in to see them so you can look up online information together.
  2. Look for advice from experts (psychologists, physicians, researchers). As parents and patients, we don’t make all of our health decisions using science but when we have the opportunity to use solid data to steer decisions, we want the correct sources. Your doctor can help vet the online voices to which you tune in. Ask your pediatrician or clinician what sites they trust the most.
  3. Look for sites affiliated with academic medical centers or health care institutions. Often those sites vet and scrutinize content with their expert researchers and clinicians. I tend to encourage families to avoid sites heavily laden with advertising as I’ve learned that content on those sites can sometimes be edited to meet requirements in tone, scope, or opinion by advertisers.

It’s my opinion that the last thing we physicians should do is shut down our patients’ online searches. It’s a new world; we must join our patients online since nearly 1/2 of many groups are using Dr. Google to diagnose. We must guide families to trusted and valuable voices and then help confirm or redirect the results of their online learning.

Wendy Sue Swanson is a pediatrician who blogs at Seattle Mama Doc.

Image credit: Shutterstock.com

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  • ButDoctorIHatePink

    I have Stage IV Metastatic breast cancer, and not only do I use the internet for medical information but I am a blogger. Since diagnosis almost 4 years ago, I have written down, mostly in an amusing way, every aspect of my treatment. I do reiterate I am blogging my personal experience and nothing I say should be taken as medical advice or anything that will happen to a patient.like me. There is clearly a need as I am approaching a million page views and many, many read my blog from start to finish. No small feat these days.

    I recommend that patients do not use google to try and diagnose themselves. They always find what they are looking for, which is always cancer. All roads lead to cancer. You can put eye floaters in and come out with cancer, you can put warts in and come out with cancer and certainly put a breast lump in and come up with cancer. People always think the worst and it is best not to try and diagnose yourself. Let your physician do that.

    Google is best used when you already have a diagnosis. Once a doctor tells you what the problem is, once you have a path report in your hand, once you know what is going on, then you go to the Mayo Clinic or Medline or some other valid site and look for information about your diagnosis. Until then, google is only as good as the search term used to find information.

    Blogs are wonderful for finding out the experience of others who have your diagnosis, especially a catastrophic one. It can be helpful to see what people go through, not only medically but spiritually, emotionally, etc. Forums can be good for finding out what other treatments people with your same diagnosis are getting and finding research trials, etc and both things can lead to questions to ask your doctor. They have to be taken with a grain of salt as you don’t know the education level of the person writing, or whether they even have your exact disease or not. But, they can be another method of gathering information.

    Doctors are too busy these days to give us everything we need and we often don’t know what we need until we have more information. The internet can help us filter down our questions so that when we see you, we can be more focused and use our time wisely. “What do you think about this? What does this mean? Will this be right for me, and why not?”

    Doctors, upon diagnosis, should have a list of valid places for people to go for information about their diagnosis and offer to answer new questions at their follow-up after information has been absorbed. That doesn’t mean to ignore the patient and say “good look it up” it just means to give an extra way of finding information. Those brochures that are handed out might be okay if you are nearly illiterate but they provide no information a real thinking person wants to know. A doctor in today’s world will embrace the internet.

    But, with exceptions, Dr. Google really is not good for diagnosis.

  • best tips

    Great Article and Great suggestions. I will be recommending this article. Thank you!!
    I bookmarked the post for the inspirational future activities :D

  • CL3579

    I hope more doctors will consider the internet as a valid source of information for patients and learn to be familiar enough with using it themselves to give patients useful guidance in finding the more reliable sources. I was told by one doctor, with whom I was attempting to share a report of a legitimate study done at Stanford, that “nothing good comes from the internet.” I think she had not used the internet much herself and wasn’t aware that patients can locate valid medical information if they know how to evaluate the sources. It would be great if doctors had a collection of sources to provide enhanced patient education on topics that can’t be covered in depth during the patient’s visit.

    Lack of access to journal articles is a big frustration for a patient, since purchasing access to one article is often more than $30.00 and it’s not always clear enough from the abstract how useful the article may be. Maybe one day there will be a better system.

  • QRS20100

    I don’t understand why a health article written by “qualified health professional” needs to put disclaimer like “this is for your information only. You should consult a qualified health professional.”

    • Docbart

      Ask any lawyer why.

    • http://ClinicalPosters.com/ ClinicalPosters

      Sue is a respected social media savvy doctor who cannot dictate the behaviors of every physician.

  • http://twitter.com/RHR_Chat RHR_Chat

    Awesome article. Thank you so much. I will refer to it often.

    As a patient and patient advocate, I discourage self-diagnosing. Period. IMHO, the best sites to go read are sites associated with patient’s physician’s medical institution (for continuity). Or, alternatively, ask the physician what sites he recommends.

  • http://www.facebook.com/shirie.leng Shirie Leng

    I agree with all of this. I would just caution that the internet is not peer-reviewed. Patients should be encouraged to stick with known sites and sites associated with academic centers or organizations. There’s alot of mis-information out there. Media is where we are. Doctors might as well learn to use it to their and their patient’s advantage

  • MEC

    Excellent article – and several good comments. The internet is indeed a valid source of information but one does need to be wary of the sites used. Be discerning is the take home message.

  • carolynthomas

    Thanks so much for this comprehensive overview. We know that a reported two-thirds of patients want their doctors to recommend reliable website resources for them. Doctors don’t have to be bloggers themselves – but they should have a ready list of credible sites for interested patients. More on this at: “Health Information Online: How To Tell The Trash From The Truth” – http://myheartsisters.org/2009/07/04/online-inf/

    A couple thoughts: first, we cannot assume that having the letters M.D. after one’s name means that medical advice offered is either credible or reliable (consider Dr. Oz for example!)

    Interesting study out of Australia a few years ago: Australian researchers reported in the British Medical Journal on
    their study that chose 3-5 search terms for hard-to-diagnose illnesses, and then looked at how Google did compared with reports published in the New England Journal of Medicine. The study found that doctors who use Google to help diagnose difficult cases can find a correct diagnosis over 60% of the time.

    This stat made me wish that the ER doc who sent me home in mid-heart attack with an acid reflux misdiagnosis had instead tried Googling my symptoms (crushing central chest pain, nausea, sweating and pain radiating down my left arm). I’m now
    fairly confident that he and Dr. Google would have steered him to the correct diagnosis of myocardial infarction.

  • http://twitter.com/krafty Michelle Kraft

    Good article. It also might be a good idea to help direct patients to the nearest medical library or librarian. Perhaps a perscription for information. Write information down so that the patient has the correct name, spelling, etc. of the disease or course of action. Often patients hear only a portion of what you are saying and retain even less.
    I am a medical librarian and I just had (5 min ago) a patient who had been battling cancer and is now looking at wound closing options/techniques for closing some especially difficult wounds. He said the surgeon explained the various techniques (which this patient wrote down) but he wanted to know more about the pros and cons of each one so he came to my library. I was able to direct him to various medical articles on the techniques and various background information about wound closing in general.
    Working together with doctors, medical librarians can really do a lot to help patients understand medical information.