NOT an e-patient: freaks out at the first search result

An SPM member [name redacted - wishes to remain anonymous :–)] emailed this, with the playful subject line “A New e-Patient”:

© Copyright 2011 King Features Syndicate. All Rights Reserved.

(Click the image to go to the high-res on the comic’s site; © Copyright 2011 King Features Syndicate, all rights reserved.)

Funny comic, but it’s a common misconception that “e-patient” = anyone who googles (or bings, or webmd’s, or…). Wrong. E-patients are empowered, engaged, educated etc – not mindless, and not likely to freak out at the first thing they read.

When you search for a restaurant or anything else, do you believe the first thing you read?

e-Patients.net colleague Susannah Fox pointed out last year (sorry, no link handy) that when “Doc Tom” Ferguson first spotted e-patients in the ’90s, they were conspicuous because engaged patients were almost always online, and online people were almost always empowered and engaged. Today, not so much: her data show that almost everyone is online, empowered or not, and most people routinely look for health-related information – over 60%, the last I heard.

So being online (or searching for health info) doesn’t make you an e-patient. Being smart about it, thoughtful, thinking critically, comparing notes with peers and professionals – that’s participatory medicine.

For earlier posts on these issues, see on Understanding Statistics, Research Issues, and Health News Review.

 

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Posted in: research issues | Why PM

 

 

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17 Responses to “NOT an e-patient: freaks out at the first search result”

  1. [...] This post was Twitted by ePatientDave [...]

  2. kgapo says:

    Dave you said you are relaxing today and puff!! you produce two posts and numerous tweets!! so, I won’t believe you when you next say that.
    However, I am glad you did you said very well:
    “…So being online (or searching for health info) doesn’t make you an e-patient. Being smart about it, thoughtful, thinking critically, comparing notes with peers and professionals – that’s participatory medicine.”

  3. Mark Boguski says:

    I agree with you completely, Dave.
    My orientation and concern as a physician has always been:

    “What do we do for the majority of the population who are online searching for health & wellness info but are not e-patients?”

    I’m pretty sure that e-patients who meet your strict criteria for inclusion in this group represent only the tip of the iceberg with respect to all of the people who could potentitally benefit from online health resources and social networks. Does Susannah/PEW, the CDC or anyone else have any real data on this?

  4. Dave,

    having a tool that gives you access to info has never been sufficient. Tom never suggested that having access to the net was sufficient. We discussed for hours if the e-patients was the right one because of the natural inclination to translate the “e-” into electronic, while we meant empowered from the start.

    For sure the net can easily become a great empowering tool, but only for those who have sufficient levels of general, digital & health literacy. Without the right combination of these 3, the use of the internet resources for health is very limited and can easily become a negative, providing unrealistic, unfocused, plainly wrong or even worse. As advocates for patients access to all available information, this is a reality we must face. It is not by chance that > 90% of ACOR users have a college education. Becoming an e-patient doesn’t make your life easier. In fact it adds a real burden. Having to face the level of uncertainties that are the daily lot of the medical world is a really scary reality, that most people have been avoiding, at any cost. And the proxies have made sure to hide it too.

    Mark is right. Current e-patients are only the tip of the iceberg. But I am convinced they do exist in larger # than most people realize.

    No one has an answer to the excellent question Mark asked, about Susannah/PEW CDC ability to get this special, granular data. It is unfortunate, but can be easily understood by the fact most high quality e-patient communities are still part of the Deep Web (for valid reasons). Neither Susannah nor other are equipped with the right tools to do a serious survey among these communities. Just look at Dave’s long term efforts to build a directory of these communities to get the confirmation!

    • Mark Boguski says:

      Gilles, Dave:
      On another subject, I’m interested in patients’ control (really lack of control) over what happens to their tissue specimens after they’ve been removed for biopsy or resection of a tumor. Although I’ve been thinking about this for a long time, it recently popped to the top of my stack after reading Skloot’s book about Henrietta Lacks and the famous HeLa cell line.
      New methods for molecular diagnosis (aka tumor subtyping) may require fresh (non-formalin-fixed, frozen tissue) and other special handling for optimal results. This is not a standard operating procedure that most surgeons and pathologist use (or even know about). I imagine that most e-patients would want to know about this at or before the time they sign the consent for surgery.
      What do you think?
      Best,
      Mark
      P.S. See the case of Christopher Hitchens we wrote about here: http://www.medpagetoday.com/Blogs/25732

  5. e-Patient Dave says:

    Funny how people react when I just point out that google/binging doesn’t make one an e-patient. For this I get corrected?? :–)

    btw, all, “Pew” is a family name (e.g. Pew Research), not an acronym, so does not need to be capitalized.

  6. kgapo says:

    “So being online (or searching for health info) doesn’t make you an e-patient. Being smart about it, thoughtful, thinking critically, comparing notes with peers and professionals – that’s participatory medicine.”

    Although I agree with what Dave says above, in order to be able to do it, definitely some above basic education level is necessary, together with digital and health literacy, as Gilles points out. That’s the combination of the three plus something else, which I don’t know how to call, “health intelligence”?? that’s behind most of the e-patients I have met so far.

    In fact, I am always curious to learn how a person became an epatient, which skills have been most useful in his path, how he used skills earned in other knowledge sectors in healthcare,what his feelings towards this new learning path are.

    I agree also with Mark that epatients are still a growing minority and because they are a minority, they surprise doctors who do not know how to deal with this new kind of patients. This kind of patients existed long ago, simply they didn’t have yet a name, neither one bothered to categorise them. Now, that epatients are described as above, I could remember a few from old days. Back,in the early 80s, doctors considered them as peculiar, inquisitive,demanding but that was all, from both parties.

    The internet and social media gave publicity to some epatients who use them, but there are considerable numbers of epatients, at least in Europe, who do not use social media or use them in low tones. I will just mention that the “guru” of the IBC ACOR community does not have visibility beyond ACOR, he doesn’t have a blog, nor a twitter account, only a FB page that he visits rarely. However, his reputation outgrew him, as he helps, as a volunteer, individual patients navigate the very little known grounds of IBC.
    I firmly believe that digital and health literacy added to good general education are vital skills that facilitate making sense of a sea of health information and that’s why I advocate for them . This is why, that as a member of a policy committee for implementing the EU Policies of Digital Agenda 2020, I pushed for including health to digital literacy, which is one of the goals of DA2020.

  7. Monique says:

    Hey … Laughter is the best medicine.

  8. kgapo says:

    Lucien, it was very good to remind us of your post,you rightly point to the e- and i-patient! it is still valid and would really to have a discussion on it…

  9. DChilds says:

    I can’t quite remember from the book or a talk but didn’t ePatient Dave himself find bad information about his diagnosis online himself prior to his doctor sending him to an online support group?

    Obviously it was still a life threatening situation and the prognosis still sucked but his google search results are what lead to him thinking he was going to die in 24 weeks not anything his doctors told him.

    • e-Patient Dave says:

      Hi DCHilds – sorta but not quite. Two possible items –

      1. I misunderstood “craniocaudad” in a CT scan report, and thus misunderstood some dimensions and got scared. I sent an email to the doctor and within 24 hours learned the correction.

      2. My doctors did not give me a prognosis, but I insisted on finding what I could, so I kept googling, and eventually found a way to score my disease. The best available information (not very good quality but the best) said my median survival given my performance score was 5.5 months, aka 24 weeks. That was EXTREMELY sobering.

      BUT note:

      - I knew enough from college to know the median is not a death sentence – it’s one data point.

      - MY PATIENT COMMMUNITY on ACOR gave me the most potent context – the excellent paper by Steven Jay Gould “The Median Isn’t the Message.”

      Note, I did NOT think I was going to die in 24 weeks. Never did. It was a measure of severity and urgency, but I completely understood what “median” is – it tells you nothing about any patient beyond the median.

  10. e-Patient Dave says:

    btw, I really really think it’s important that we consider issues *using* examples (e.g. Regina Holliday’s husband, Diane Engleman’s daughter (“mama lion” on this site), Donna Cryer (on this site), me, whatever)…..but they should only be examples for consideration, and no single case should be the basis of a go or no-go decision on any policy point.

  11. Joe McCarthy says:

    I thought the comic strip was pretty funny, but found myself wondering whether we want to add elitist to the list of “e” words that describe e-patients in reading the subsequent commentary.

    I don’t believe that people who are “empowered, engaged, educated” and suffering from an undiagnosed illness should not be counted among the ranks of e-patients if they have fearful reactions to disturbing information they encounter online (or offline). One person’s sobering information is another person’s scary information; to me the important characteristic is whether one perseveres in searching for information, regardless of what is found, or what kind of reaction the information elicits.

    A 1998 research letter in the Lancet on Health anxiety in medical students reviewed a few studies showing the prevalence of medical students suffering symptoms of illnesses they are studying. While the letter concludes that medical students are not significantly more prone to this type of reaction than other segments of the population, I think it is important to note that overreactions to information about disease is not limited to “mindless” people.

    I will admit that I am probably taking the subsequent commentary too personally (in a second-hand way). I recently wrote an epic blog post about fructose malabsorption, the latest hypothesis in my wife’s epic digestive health odyssey [one of the reasons I'm late to this thread, and have largely dropped out of most social media loops, is that I've crawled into a virtual hole, spending as much time as possible reading medical journal articles about the various candidate diagnoses we and/or the health professionals we've consulted have been considering]. I consider my wife to be an exemplary e-patient in every respect, and yet there have been periods of time where I have had to act as her filter in searching for possible diagnoses and treatments online, because the combination of scary symptoms (which at times have required her hospitalization) and scary information created overloads of fear, uncertainty and doubt.

    While I don’t believe that there was any conscious intention to be condescending on the part of Dave or the person who posted the comic, and I have the highest degree of respect and admiration for Dave and other SPM founders and members, I do think it is important for those who are advocating participatory medicine and leading the e-patient movement to be especially vigilant against elitism, and the natural human tendency to project our own experience (and expectations) onto others. Rather than elitism, I would propose that empathy may be one of the most important “e” words for promoting greater participation in participatory medicine.

    I’ll go crawl back into my hole now.

    • Joe, I’m only now moseying around to this.

      Your story of your wife’s arduous struggle to solve her disease is deeply moving to me. I know how sharp you are, so I can imagine the quality of discussions in your house. I sure hope you find the answers you / she needs, and I sure hope you keep in touch about it.

      To your point about elitism – you’re right, that was never my intent. My finely sharpened point is precisely in the headline: well developed e-patients don’t freak out at the first search result.

      If I read you correctly, at this stage you guys are on the thousandth result, si?

      Your note, though, hits home on empathy. I know well that it’s distinctly different when you seriously wonder whether there will ever be hope.

      I honor the work you’re doing on behalf of your wife, being “e-patient by proxy” in support of her own work. Thank you.

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