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.
Points raised:
- 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?
First, thanks for citing Pew Internet’s health research. The horse is most definitely out of the barn when it comes to people looking online for health information. I could go on about that, but I have different fish to fry today.
The Costco articles and the On the Media show prompted me to do some research into hypochondriasis and to revisit the Microsoft study, which is available here:
Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search
Ryen White and Eric Horvitz, November 2008
http://research.microsoft.com/apps/pubs/default.aspx?id=76529
Here is a post I wrote when it came out:
Cyberchondria: Old Wine in New Bottles
You’ll see I raised some questions about whether a sample of 515 Microsoft employees (median age = 35; majority male) is representative of the general U.S. population.
I’ve kept my eye on coverage of the study over the years since it keeps popping up. I like this quote, for example:
“Horvitz, too, believes in the power of the web. ‘It’s an extraordinary resource for healthcare information,’ he says. ‘We’re talking about a stone with a rough edge here, not a fatal flaw.’
Full article here.
One thing I appreciate about the Microsoft study is that it defines “cyberchondria” as akin to hypochondria (as opposed to Harris Interactive’s use of the term to mean all internet users who go online for health information). So I did some reading about that psychological disorder and found some intriguing data on Medscape:
“The prevalence rates for primary hypochondriasis in the primary care setting are 0.8-4.5%. Some degree of preoccupation with disease is apparently common, because 10-20% of people who are healthy and 45% of people without a major psychiatric disorder have intermittent unfounded worries about illness.”
Further, as I read on the Cleveland Clinic site, hypochondriasis is difficult to diagnose (so maybe it’s not a great idea to just throw around the term, even a cute “cyber” derivation of it).
In fact, the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders is considering a revision to the DSM-5 to classify hypochondriasis as either Illness Anxiety Disorder (which does include “repeatedly seeking information and reassurance from the internet or other sources”) or Complex Somatic Symptom Disorder.
All of this is to say:
The vast majority of American adults who go online for health information are probably not hypochondriacs, nor are they “cyberchondriacs.”
Well said Dave, as usual.
We all go through that newbie phase when we start doing anything new, whether it is a new programming language or learning to drive. Getting to know your Crohn’s disease, lyme’s disease, renal cell carcinoma, healthcare pricing, cardiovascular risk,… are absolutely no different except the stakes are higher. Does this cause people to close their eyes to keep out the light? Absolutely. But the cure for medical gnosiophobia (fear of knowledge) such this is within the thousands of others with the same issue, discussing it and, most importantly, coping with the problem online in communities like ACOR, PatientsLikeMe, and hundreds of others. In these communities we find hope, commiseration, advice, friendship, and sometimes information that will reduce the morbidity and mortality of disease.
There is only so much stress any person can handle, so it is understandable that people suffering from life threatening disease would not be ready for such interactions. In these cases I hope there is someone close to the person with the problem who can go online to read and engage for their loved ones. These days, with the explosion of information available, few clinicians can stay on top of all the latest research and they need our help as much as anyone. Just as important, no physician could possibly track the symptomology as well as a patient or direct care giver. Knowledge is power here and with tracking tools like http://www.Wellapps.com has created and others, we as patients, need to be active participants in our care to get the best outcomes.
Finally, once you are well educated, I recommend hitting the literature through a research literature search at the National Library of Medicine: http://gateway.nlm.nih.gov/gw/Cmd. Some scientific papers get too complex, but search for “review” and your disorder and you may find yourself better educated than many Physicians. You will also learn the best places to be treated for your condition in the world, particularly important if you find it is time to switch doctors as Dave did early on (saving his life I expect.)
Good luck. Thanks for another great post Dave.
Terrific response, Alex – great additional insights into the how and why of this effect. Thanks.
Wow, great points Dave, Susannah, and Alex.
“Some symptom checkers are more alarming than empowering.” – Ugh. Are we EVER going to get past that?
Besides, most e-patients I know are way beyond the use of symptom checkers. Think about it – when was the last time *you* used one of those?? (I can’t remember the last time I did)
They are, by definition and nature, designed to be general and brief. In my experience, most people use those once and never use them again… they aren’t very helpful.
“It’s best to avoid what happens when patient blogs, sponsored sites, [etc] conspire with our imaginations to produce ‘cyberchondria.” – Ugh again. Patients are sick and tired of being told that the internet just doesn’t exist and the information on it is not valuable. Ask the members of the information/support site that I run…most of them will tell you that their lives didn’t start turning around, and they didn’t start learning to live beyond their illness UNTIL they found the community. Yet, we’re still supposed to ignore the internet.
This type of attitude is why it is so important for health organizations to pay attention to the type of content they put out. It is their responsibility to make sure their content is useful, correct, and updated.
Hopefully, as we start to stand up as e-patients and our voice gets louder, we’ll see a shift, and more doctors and organizations will put effort into education instead of putting their heads in the sand.
Stacy, the only thing I’d add is that just as I hope others will have empathy with patients, I hope relatively advanced e-patients will have empathy for people who are just stepping into this world, or awakening to it, for the first time.
One might guess that many people who fear scary info are fairly new to the activities that you and I do often. As much as I like to say “Ugh,” :-), I try to think of someone who’s simply new to this.
Yeah, I hear ya. You’re right. :)
Everything that is “new” goes through an adoption curve, and at least we are talking about it now.
The fact that Costco was interested in covering it is a move in the right direction, for sure!
Great points everyone. I spend quite a lot of time researching how people research health matters online and see first hand this ship has sailed and the internet is a crucial source of important health info. Sixty percent of those online will research health info and half of them use social media to attain health information. The truth is the internet is crucial to any type of research as it allows for vast information to be available at your fingertips.
Saying the internet will create undo fear or may provide false information is no different than saying patients should not use books, magazines or television to attain health information for the same reason. There will be people who misuse information but is that the internet’s fault? I should note that in my studies I have also seen varying levels of trust and while a good portion of people see social media as a valuable source of information that helps with their doctor’s visits only a smaller portion actually trust that info. I think we all understand the internet’s limits and it won’t replace doctors but will help in our interaction with them by making us better patients.
Dave – great job on your response to Costco. And I agree that the “no” side’s words are at least inexperienced.
I’ve written about this topic for many years as you know. Here’s my guide for finding credible and reliable health information on the Internet.
Arguing about whether people can improve their health by using the Internet is wasted energy. We are doing it everyday.
Trisha Torrey
Every Patient’s Advocate
Trisha,
Again I ask for a little patience, and as a wise person once counseled me, don’t ascribe to malice what can be explained by not knowing.
A related point came up on e-patients.net last week in the discussion of Elizabeth Cohen’s CNN.com piece “10 dumb things you do at the doctor’s office” (another area of your expertise, as you noted there). That’s the point about what someone does as distinct from what they do.
Dave,
All the really smart people already said it. You did a great job and I couldn’t agree more. A Costco Senior VP is a neighborh here in Seattle and I am going to give him and earful, but also thank him for airing this issue.
Andrew Schorr,
off to ASCO in Chicago to build relationships and seek funding for the new Patient Empowerment Network
Andrew,
Hahaha, I should have known we’d hear from the author of “The Web-Savvy Patient”! (Which is, by the way, completely on target for this discussion.)
But PLEASE, everyone: let’s have some patience with people who are just beginning this journey!
As I said before, we expect physicians to be patient and explain things to us as we move forward in our knowledge. PLEASE let’s do the same with everyone else – including physicians, professors, reporters, and even Costco executives :–) – who are somewhere else in THEIR journey.
What I said in my little rhyme above applies to them to: “Enable, and train.” Share what we’ve learned – don’t clobber others for not having seen it yet.
Dave
Ran across your blog post and couldn’t agree more with your perspective. It’s not just that “they are already doing it”, there are a number of people who do benefit from their research (whether emotionally or physically). One of the biggest opportunities in this area lies in helping people, who are already looking, to find information that is most relevant to their search (not always easy) and then helping them take action with that information (sometimes even harder) — whether that action be sharing and/or discussing with their physician, contacting an expert in the field or simply educating themselves on the condition and their options.
Further, this information gathering continues to grow. As the mentioned PEW research indicates, there have been large increases in on-line search. What is striking, however, is that there have also been dramatic increases in people seeking health information from other sources than their doctor off-line as well. The Center for Discovering Health System Change, reports that “in 2007, approximately 56 percent of all American adults—more than 122 million people—reported seeking information about a personal health concern during the previous 12 months, up significantly from 38 percent—72 million people—in 2001.” Over the past decade, people have dramatically increased their search for medical information – across all options, not just the Internet.
Understanding the drivers of this shift (not just that it has happened) will help point us in the right direction in meeting these empowered consumers needs and helping them “filter the gold from the garbage”.
Congratulations for your writing and for all feedback comments!
I think you’ve done a very good analysis and description of the scenario related to seeking health information on the Internet.
As a medical doctor and responsible for a quality program of health related-content websites, based on an assessing process and a trustmark ( Web Médica Acreditada of the Medical Association of Barcelona, Spain), I consider it very important to take two things into account:
–first of all, we should offer patients and the general public all kinds of tools and means to be more informed about diseases and their own health, that means, of course, also “prescribing” quality websites, an activity more advisable and commonplace every day in healthcare settings and –secondly, it’s very important to be sure that patients feel free to share the information they are getting from the Internet and in fact, it’s a good way to improve the medical-patient relationship in this new context, where Web 2.0 and ICTs are increasingly outstanding in this relation (here we could deal with social networks thoroughly and their impact).
But one key issue is to know, as you have mentioned, how to “learn which sites are problematic” and which are trustworthy and as I see, health professionals play a crucial role, to ensure “empower, enable and train” as well as communicate and connect.
As in all things there is a bad side and a good side, and we have to manage all that in the best way we can, but in collaboration. So definitely “yes”, being on the alert for “no”.
I’m amazed, I have to admit. Rarely do I encounter a blog that’s both educative and entertaining, and let me tell you,
you’ve hit the nail on the head. The issue is an issue that too few people are speaking intelligently about. Now i’m very happy I stumbled across this
in my search for something relating to this.