Ask HN: If doctors are right, why would you still research online?

mindcrime · on Aug 28, 2015

I am recently building a healthcare platform for patients to receive better personalized medical info.

On a tangential (at best) note: The main thing I want in terms of online + medical, is one place to access all of my medical records. Sadly, my GP uses one EMR system, and the hospital and it's associated doctors (including my cardiologist) use a different system, and it's painful - if not impossible - to share data between the two. So if I wanted, for example, to get a graph of my cholesterol numbers going back for the past year, I have to login to two different systems, copy and paste the numbers into a spreadsheet, and then do the analysis.

And FSM forbid I want to try and correlate those numbers with something from Strava (which logs my activities) or Fitbit (which has my weight and bodyfat %, etc.)

Unfortunately this is more of a political problem than anything, as the various EMR vendors don't have much incentive to open up their systems with APIs and data-export functionality. At least outfits like Strava and Fitbit do (IIRC) have some API support, but getting the medical records bit is a real challenge.

mayi12345 · on Aug 28, 2015

Thanks for your well-thought comments! I think one of the YC alums is already doing that: https://picnichealth.com/.

What we are building is optimize the experience when you do info search. Such as we want to help you find: how another bike racers who had heart surgery make their decisions.

dragonwriter · on Aug 28, 2015

> why do so many patients (and their families) do their own research online [accordingly to Google, 70% of us do], even after the doctors tell them their best suggestion?

Lots of reasons.

Some because they are socialized into trusting other -- often very unreliable -- information sources, but you still can't get the actual treatments except from a doctor. So they still go to doctors -- and try to get from them what other sources have told them they need -- but don't actually particularly trust the doctors.

Some do it because they recognize that doctors are fallible, and have less at stake in any decision than the patient -- some of these people also have the skills and knowledge to be reasonably informed readers of things like medical reference and research literature (even if they aren't practitioners) and are active participants with their doctor in their own healthcare.

Some people just want to understand the meaning of the medical jargon they've gotten from their doctor.

There's probably a lot more reason for doing independent research even after getting information from a doctor.

sjs382 · on Aug 28, 2015

Lots of reasons.

Because online research might prompt first-aid, before visiting a doctor.

Because we like to prepare ourselves before receiving (possibly terrible) news from experts, to soften the blow.

Because we tend to reach for our smartphones in stressful situations.

Because doctors are fallible.

Nadya · on Aug 28, 2015

Doctors are not infallible.

I often look for alternative answers online and get a second and even third opinion from other doctors.

mindcrime · on Aug 28, 2015

The book How Doctors Think makes that point very explicit and provides some useful tips for working with your doctor(s) to get the best treatment. I highly recommend it to anybody and everybody, FWIW.

Doctors are not infallible.

Case in point: After having a heart-attack, my GP and my cardiologist have both recommended I generally avoid taking Ibuprofen. Apparently it has some possible negative cardiac implications. OK, so a while back I was at the ER for some random pain, and the ER doctor said "take Ibuprofen". I told her that my GP and cardiologist both said not to, due to the cardiac risk and she goes "Oh, really? I didn't know anything about that. I'll have to go look that up. Thanks for the tip".

So yeah, even doctors don't always know everything. I mean, really, how could they? They're experts, sure, but their domain is too big, too vast, for any one to know all of it. It would be like expecting one of us to be an expert in all of C, C++, D, COBOL, Julia, R, Erlang, Forth, Haskell, Java, SQL, FORTRAN, Ada, Scala, and Clojure, AND know all about all of the latest libraries as they come out, AND know all about all of the newest emerging tools all the time. Nobody could possibly do that, and no one doctor can keep up with everything going on with medicine.

mindcrime · on Aug 28, 2015

This isn't an either / or situation. I don't go do medical research online because I don't believe what my doctor tells me. Hell, in the case of my GP, he tells me to go online and look for stuff.

Why? Well just think about it and do the math. Let's start by talking about a GP / Family Doctor, not a specialist. A GP treats both kids and adults, and deals with, effectively, every possible condition a person could have - from ingrown toenails to cancer. There's just no way one person could be completely knowledgeable on all of the latest research and thinking on every one of those topics. A family doctor most likely optimizes for the common case, by being very knowledgeable about the really common / obvious stuff... which means the less common your condition, the less likely your doctor is to be really informed.

In a similar vein, think about how many patients your GP has, and how many different diseases, syndromes and conditions she has to think about / deal with, all the time. Let's say you see the doctor once every 3 months... do you think she is going to remember every detail that you told her last time, without mentally conflating something with something influenced by another patient. The book How Doctors Think talks a lot about how cognitive biases like "availability bias" affect doctors.

Given all that, you'd be nuts to go in with a mindset that "the doctor is always totally informed, and always right". And even if we were talking about a specialist instead of a GP, the same basic reasoning applies, just with slightly different details.

What triggers you to believe whatever info you receive online, vs. what your doctor told you to do?

Again, it isn't that I believe what I read online more than what my doctor says. It's about knowing that doctors don't know everything, are subject to biases, and can't be 100% totally attentive to any one patient, because of conflicting demands. So I go online, read stuff, and if I find something interesting, I go back and talk to my doctor(s) about it. Sometime that leads one of them to say "You know what, let me do some more reading on that and get back to you" or whatever. Or sometimes it leads to "I really hadn't thought about that, but that's not a bad idea".

Case in point: I had a heart-attack, so I now see a cardiologist. He prescribed me the full array of modern prescription drugs that "the canon" tells a cardiologist to give a patient post-MI. But I did some reading on various dietary supplements that are (purportedly) beneficial, and went to him and said "Hey doc, let me run through this list of stuff with you and see what you think." On almost all of them his response was "as far as I know, there isn't enough evidence to say one way or the other. Feel free to take it, but I can't promise it will help you, or that it won't hurt you." OK, that's expected. But when I mentioned fish-oil, his face kinda lit up and he goes "Oooh, yeah, you should probably be taking that". And so it's now officially on my chart as something I am supposed to take, right alongside my other meds. Would he have thought of that if I hadn't mentioned it? Maybe, eventually. Maybe not. But I'm glad we talked about it, because the more I read, the more convinced I am that fish-oil has some very strong benefits. That fact that a cardiologist agrees that I should be taking it lends to my confidence that it is beneficial.

Another anecdote for you: I take a drug called Metoprolol, after having the MI. From what I can tell, most cardiologists (mine included) generally plan to put any patient who has an MI on that drug (or a similar one) for the rest of their lives. Now I could just accept that and leave it be, but here's the thing. Because I went online and read up on it, I know that it hurts your cardiovascular performance (in terms of running, biking, etc.) by a significant margin (10% or more). I am a competitive bicycle racer, so that's bad. I also found out that there's some really recent research showing that there's no mortality benefit to treating post-MI patients with Metoprolol more than one year after their MI. So all of this lead to me talking to my cardiologist and saying "can we talk about dropping the Metoprolol after a year". Now it hasn't been a year yet, and we haven't made a decision yet, but the point is, I have to live my life, and I want to have the most informed conversations I can with the doctors, based on all of the different parameters in play. And if I didn't do things like going online and reading up on drugs, etc., I'd be flying blind.