“I found my diagnosis on the Internet”

Raise your hand if you’ve ever gone online in search of a diagnosis that fits your symptoms or to read everything you can find about a condition you’re dealing with or a new medication you’re taking. Now raise your hand if you’ve ever talked to your doctor about what you’re reading on the Internet.

The Internet has made a bottomless well of information readily accessible to anyone with an online connection. But it seems we’re still figuring out how to incorporate this fact into the doctor-patient relationship in ways that allow everyone to feel comfortable with it.

Doctors tend to cringe when patients show up for an appointment with a stack of printouts from the Internet.

Patients tend to resent it when the doctor ignores or dismisses their personal research.

Doctors may not mind their patients’ efforts to become more informed but they don’t always trust the patient’s ability to recognize whether a source is reputable.

Patients want to know how to evaluate a source’s credibility but they don’t know where to start.

These are some of the impressions I gathered earlier this week from a health care social media chat on Twitter that focused on, among other things, that pesky pile of printouts in the exam room. (For those who haven’t discovered the weekly tweetchat, it takes place every Sunday from 8 to 9 p.m. central time; follow along at #hcsm and brace yourself for an hour of free-wheeling, fun and insightful discussion.)







So what are we to glean from all of this? Although there doesn’t seem to be a single right way for patients to share health information they’ve found online, some approaches may be more helpful than others.

Most doctors don’t have time to wade through large stacks of printouts, so patients will probably have more success if they stick to summaries and as few pages as possible.

How the topic is introduced seems to matter. Is it an open-minded exchange or is it an argument? Is it respectful of each other’s perspective? Doctors have greater medical knowledge and hands-on experience but patients are the experts when it comes to their own experiences.

One of the conundrums is how to sort the wheat from the chaff. There’s a lot of questionable health information floating around online, but if patients haven’t learned to critically evaluate what they’re reading for accuracy and credibility, they can easily be led astray by misinformation. On the other hand, it’s hard for patients to develop these skills if their doctor is dismissive of their efforts and unwilling to provide coaching or guidance.

Frankly, the train has already left the station on this issue. A 2009 study by the Pew Research Internet Project found that looking for health information online has become a “mainstream activity.” Sixty-one percent of the adults who were surveyed said they used online sources for health information, and one in 10 said that what they learned had a major impact on either their own health care or how they cared for someone else.

But here’s another interesting finding: Patients whose doctors encourage them to search out health information online are, on average, more engaged in their care and more satisfied, regardless of whether they and the doctor agree on the information. In other words, it’s the participation and the open dialogue that really matter.

Quibbles over whether patients should talk to their doctor about health information they’ve found online are no longer the point. It’s time to move on to the bigger issue of how to have these conversations in the most beneficial way possible.

2 thoughts on ““I found my diagnosis on the Internet”

  1. It’s always good to cite sources, too, so that a doctor knows you’ve been looking at CDC or Mayo information and not some site trying to sell vitamins or somebody who said something on Facebook one time.

    There’s a *lot* of bad health info out there.

    It definitely also does matter how a doctor reacts, too. I’m pretty sure I have ADHD (family history, plus research, but mostly family history), and when I told one doctor that, the doc wanted me to take an hour-long psychiatric test that tests for everything (depression, bipolar, anxiety, etc. etc.).

    And of course, since I probably have ADHD, I was like “An HOUR?? That’s like… FOREVER.” and opted out.

  2. I imagine it would help if providers could go just a little bit further and, instead of simply saying “go do some research”, provide a quick list of reputable sources of information. For example, referring a newly diagnosed cancer patient to the American Cancer Society, the Mayo Clinic, or the U.S. Department of Health and Human Services’ site, health.gov. Every provider, having gone through such intensive training and (ongoing) research should be able to rattle off 4-6 good sources without hardly having to think about it.
    Simple respect and communication is all they should need to handle patients who bring their own information. Respect their concern by at least looking at what they’ve brought, then explain why the in-person diagnosis is different or the same (and then refer some additional, reputable sources). If a patient brings in information, they WANT information, so give it to them.

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