Update June 8: I’ve edited this text in an effort to make it more constructive and informative. I did this after getting feedback from several people that it came across as more negative than I had intended. Thanks for the feedback! Everyone I know agrees that healthcare would improve if we all listened better, and I guess that includes bloggers…
As a longtime loyal member of Costco, the warehouse shopping club that sells nothing but great quality at amazing prices, I gladly said yes when they approached me to participate in their monthly “Informed Debate” feature, because the topic was seeking medical information online.
The feature is in the June edition, here. (It’s page 16 in the print edition.) I didn’t get to compare submissions with my “opponent,” so it wasn’t really a debate; we just submitted our thoughts. I’ll paste in my 400 words here, and then I’d like to address the concerns expressed by the others.
So: should you seek medical information online?
My response: Yes.
Here’s my response as I submitted it. The version that went to print was edited for style and length.
It’s been said that 70-80% of healthcare is self-care. But when healthcare turns to medical care – when disease arrives – it requires information most of us don’t have. Today, ordinary people can find information online that they could never reach before. So smart web users are increasingly becoming e-patients: Empowered, Engaged, Equipped, and Enabled.
I’d never heard of e-patients when I was diagnosed with kidney cancer, but I was one: I used the internet in every way possible to help my case, in partnership with my doctors. How did they react? They appreciated it. My primary physician even suggested I join a patient community on ACOR.org.
People are doing this in droves. Recent reports from Susannah Fox at the venerable Pew Internet & American Life Project say that 80% of online adults (61% of Americans) turn to the Web for health advice and information , and one in four chronic disease patients go online to find others like themselves . It makes sense: we go online to learn about far less important things, so it’s natural to do so when our family’s health is at stake.
(Heck, I even found my wife online. At first I had some less-perfect “search results,” but I got better at it. And that was way back in 1999; ten years later the book Socialnomics said one in eight US marriages met online.)
Clearly, people are learning to find what they need online. The problem is, how do you filter the gold from the garbage?
Answer: we find information online, but most often to evaluate it we turn to professionals. (Pew says the most trusted resource for reliable health info is the professional.) This suggests that “paging Dr. Google” doesn’t replace our professionals, it supplements them.
This January’s Time gives a great example: Dr. Zachary Meisel wrote of a patient with a rash, whose internet printouts helped him reach the correct diagnosis sooner. Yes, a patient helped her doctor.
(Beware, though: not everyone online is savvy; some anti-vaccine bloggers persist in their beliefs, even though all the anti-vaccine research has been revoked as fraudulent by almost everyone involved.)
So yes, feel free to research your family’s health – after all, whose health is it? Just be smart about it, same as anything you do online. Inform yourself, think, and verify: never trust just one type of source.
The “No” side
I hesitate to comment on someone else’s words when I haven’t contacted them; in my view, one of the first rules of social media in a disagreement is to establish a personal connection. So I emailed, but haven’t heard back, so I’ll just present my views. I welcome all comments.
- Learn which websites are most trustworthy: We agree.
- Watch out for “information” sites that have a covert agenda: We agree.
- Some symptom checkers are more alarming than empowering: Yes – but this is common when anyone is first exposed to any new domain of knowledge, and it quickly resolves as an e-patient learns not to be alarmed by everything they read.
- Washington Post columnist Carolyn Butler expressed this last weekend on NPR’s “On the Media.” She had googled a symptom and in short order had discovered that it could be a hundred things; she scared herself and worried herself. Her advice boiled down to “I scared myself, so you better not look.”
- To me a better answer is “Open your eyes, wake up, and learn, if you want.” During my own near-fatal cancer, at one point I saw something in my medical record that I didn’t understand. In one brief email exchange with my oncologist it was straightened out. Not only did I get my answer; I learned the answer and I became a bit more sophisticated about medical information.
- When we say “Don’t look because you might get scared,” it plays right into the hands of paternal physicians who believe “Patients can’t handle it.” I suggest, don’t force people to go out of their comfort zone, but by the same token don’t restrict those who want to know as much as they can.
- Online consultations with unknown “experts,” e.g. JustAnswers.com, can be problematic: Yes indeed; that’s why we agreed above, “learn which sites are problematic.” (Empower, enable, train.)
- The real risk to patients is when doctors have bad information, whether or not they post it online.
- Last year I looked at a well respected web site, MedHelp.org, to explore the only medical topic where I know a little: my disease, renal cell carcinoma. (The MedHelp page is here.) Amazingly, they said my drug, interleukin-2 (IL-2), works by blocking the blood supply to the tumor. That’s flat-0ut wrong: such drugs are called anti-angiogenesis, and IL-2 isn’t that. (It’s an immune system treatment.)
- Here’s the scary part – the reality everyone needs to realize:
- That information is from A.D.A.M., the most respected licensed medical database. And it’s wrong.
- The page was reviewed by a doctor – a nephrologist.
- I reported the error last year, and nothing’s been done about it.
- And the great opportunity is that my patient community, on ACOR, knows the correct answer.
- (In case anyone’s wondering, yes, I checked the above with my oncologist.)
- Bottom line: finding the real answer is not trivial, even with doctors. As I said in my “yes” response, nobody should automatically believe any one source. Online or off. Savvy patients know that. (In a sense it’s just ordinary savvy consumer behavior.)
- A Microsoft 2008 study said people “catastrophize” in their searching: Update June 7: Please see Susannah Fox’s commment about this study – she conversed with its author. The bottom line is not as suggested in the article.
I’ve heard about this study (Carolyn Butler cited this one too … had she just received her Costco magazine??) but I haven’t found the original paper. If it’s as they say, it may be one of the most intellectually bankrupt things Microsoft ever published. (Sorry, friends at MS – somebody should really send that study to the RetractionWatch blog.)
- The example given is that after someone searches “headache,” they’re more likely to then click links to “brain tumor” than to “sinus infection.” Well, think about it: when you’re googling (or Binging) a problem, don’t you explore the downside? (Did they find that people then take stupid actions, or have a problem? I don’t know.)
- In any case, to me the answer is to teach and enable.
- “It’s best to avoid what happens when patient blogs, sponsored sites, [etc] conspire with our imaginations to produce ‘cyberchondria.'” Well, of course, the web sites don’t conspire – that happens entirely in the imagination of the inexperienced patient who hasn’t learned yet how to evaluate what they read online. I agree, it’s best to avoid that – by teaching people to read the web more wisely, and not let their imaginations conspire. Cyberchondria (imaginary diseases caused by clueless searching) evaporates when people wise up.
In my view it boils down to this:
Pew’s data, and other studies by Manhattan Research and I’m sure others, show that the great majority of people are online doin’ health search. Is it useful to say “Y’all better cut that out”? For many years that’s the approach we took with teens and sex, and it didn’t work out well – the more effective public health policy was to educate people so they can keep themselves out of trouble.
That’s putting the power where it belongs: in the hands of the person making decisions.
It’s all summed up by this little verse, which came to me last year, fully formed, while I was preparing testimony for a policy meeting in Washington:
The solution is not
to restrict and constrain.
Empower the people:
enable, and train.
Our physicians are already overloaded, and as we baby boomers become elders, the workload will only get greater. Doesn’t it make sense to improve the self-help skills of the most under-used resource in healthcare – the patient?