Will patients embrace Health 2.0?

Someone going by the name “Darthmed” recently posted a comment that stopped me in my tracks:

… The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard Google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

It is my job to measure the impact of the internet on society and contribute data to the public conversation. I analyze survey data, write reports, answer reporter’s questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the Interwebs.

In this case, I was definitely not writing about health IT, nor the latest Health 2.0 trendlet, but the basic, nearly-universal-among-internet-users habit of Googling for health information. Search is becoming a wallpaper technology, something we don’t even see anymore, yet it’s clearly an activity worth discussion.

However, Darthmed is telling the hard truth about health issues facing the United States. It’s his voice I heard in my head as I listened to speakers at a recent National Institutes of Health workshop, “Preventing Stroke and Heart Disease: Connecting Traditional and Emerging Approaches to Change Behavior.”

Speaker after speaker talked about how nothing really works in trying to get people to change their diets for the better, to get more exercise, to save their own lives and the lives of their children. It was a parade of one step forward, two steps back interventions: media campaigns, individual counseling, community outreach. None worked long-term.

As I sank lower and lower in my seat, the lizard brain voice started in: “What good is any of your data in the face of this crisis? People can’t sustain behavior change after being told directly that they are killing themselves. And now you’re going to get up there and talk about Flickr, YouTube, and blogs?

Luckily, the NIH workshop happened to fall on the same day as the FDA’s hearings on the internet and social media. My Twitterfeed was alive with coverage of the hearing, including some passionate opinions about how the internet can transform health care.

Another piece of luck is that for every Darth, there is an Obi-Wan Kenobi. For me, that’s Esther Dyson. She gives me the confidence to say nope, I don’t have a crystal ball, but I can help people understand the present in order “to get a sense for how the future will pan out.” I believe that, although very few people engage with their health on a daily or even weekly basis, it is important to understand what they do when their attention is focused on a health question.

I also believe that we don’t yet know enough about how to capture people’s attention, how to inspire them to say, “You know what? I’m going to skip that fast-food meal and make something healthy for dinner.” Maybe it could be something on Flickr, YouTube, or a blog. Maybe it’s something they find in a search result. Maybe it’s being connected, being part of a network of people who are influencing each other without being conscious of it.

So, welcome Darthmed — please keep posting your killer observations. But don’t mind me if I keep tracking how the landscape is shifting under our feet.

Susannah Fox is Associate Director, Digital Strategy at Pew Research Center’s Internet and American Life Project, and blogs at e-patients.net.

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  • Vox Rusticus

    Sorry to say, for most people the internet, when not being used as a tool in employment, is another attraction to sedentary behavior, indistinguishably different from TV channel surfing. E-gadget fascination, something the author seems to enjoy, is not a substitute for healthy behavior. And pumping people full of information, twitterfed or not, is not going to make the obese lose weight or the smoker stop smoking.

    The web-infatuated live in their own world that pretends to believe they are riding some tremendous wave that will change behavior now two-plus generations in the making. They are telling themselves stories. Let the OP believe whatever she wants, your apps won’t save you.

    Our society is an object-lesson on what happens when you take an organism evolutionarily adapted to deal with scarcity and give it a nearly unlimited (so far) access to condensed energy, oil, and a technology to use it.

  • http://www.eleventhhourllc.com Laura NP

    The patients I see are faced with having to prioritize their lives in a way most of your readers, including Darth, have no concept of. When you are trying to stay warm, find clean water, and maybe get accepted to a shelter bed if you get in line early enough…well who cares about nutrition and buying pills! It is a struggle just to get a bus token to get transportation to a clinic. Come out of the ivory tower please! When you have to choose between feeding your child or using your only few dollars to take three buses to get to a clinic for your diabetes education and finger stick…which would you choose? It’s not about getting people to “buy in” to the healthy life lectures. You cannot blame the patient for not changing their behaviors…when all most are trying to do these days it to possibly have a shower, possibly find some clean clothes, and feed their children.

  • http://www.icmcc.org Lodewijk Bos
  • http://33charts.com DrV

    I’ve always suggested that those of us interested in all of this are in something of a bubble. A quote from my August 2nd post on 33 Charts:

    “As I’ve suggested in the past, I think there’s a disconnect between those of us who think about this stuff and patients we treat. To some extent our social health conversation carries on in relative isolation. Our network sees and feels the world of health through the eyes of a small, vocal minority. We like to believe that all doctors are like Berci working in hospitals run by CEOs like Paul Levy caring for patients who all think like e-patient Dave.”

    I think we all become surprised when those outside the bubble don’t see it all the same way. But the bubble will grow. Nice piece.

  • kullervo

    But how often does a doctor actually tell a patient “you’re killing yourself,” versus saying “I’m concerned about your blood pressure,” or “your cholesterol is rather high,” or some other easily-dismissed phrase?

  • http://www.medicalbilldog.com Dennis (Investigator/Negotiator) at Medical BillDog

    Hi Susannah,

    I wouldn’t let Darthmed fluster you too much. In fact, until just last week, I would have said nearly the same thing, but I wouldn’t have seen it as a problem. I would have said 90%. I would have seen it as a simple continuation of Sturgeon’s Law. In 1951, the then-very-popular SF writer, a thirty-three-year-old Theodore Sturgeon, got up in front of a convention hall full of SF fans and shocked them all to silence with his opening statement:

    “Ninety percent of science fiction is crud.”

    Many who were present later insisted he used a much stronger epithet than, “crud.” One beat after the last person in the room was silent, he added, “Of course, ninety percent of everything is crud.”

    The status quo is always less than what we want, right? The average intelligence quotient is 100. You can see that on any freeway in the world. So, yeah, I figure, on most items of any importance, I’m fighting for the rights and concerns of the top ten percent. The ten percent that do things, think things, make things, and change things–those are the people I want to think of as mine. Those are the people whose rights I want protected.

    But, maybe young Theodore was having a bad day. Maybe he wouldn’t have said 90 percent normally. Maybe, when he was a little older and more experienced, he would have said 80 percent. Or 70. I guess 60 would be too much to ask for.

    Last week, without stating any numbers, I answered a concern, stated in Paul Dorio’s blog, that the new EHR connectivity requirements would mean doctors would be spending a lot more time answering (implied: unnecessary) questions. In response, I said,

    Another point everyone keeps forgetting in all of this brouhaha over Open Notes is that the data are already out there and already legally available to every patient. The data just aren’t in the most convenient format. Most of the time, the vast majority of patients don’t care about their data. They don’t want to see it. They trust their doctors to handle the ho-hum quotidian maintenance issues. They even trust them to handle more serious illness and injury matters. It’s only at times of extreme duress–heart problems, AIDS, extreme pain, long-term insomnia, cancer, and anything else life- or lifestyle-threatening–that most of us start thinking, “Oh God, I have to take an active role in this, or I’ll only have myself to blame when it all goes south.” Sure, some of us would like to be pro-active, but we’re not even a very large minority.

    I didn’t think I was being too terribly cynical, but while I was writing, someone named Sherry Reynolds posted:

    In the Seattle, Washington area at Group Health Co-op where their 580,000 members all have access to the EHR (about 50% use it) over 30% of all family practice patient encounters are now happening via email or telephone encounters. This has freed up provider time so that they can move to the medical home model (along with additional provider resources).

    The key is that Group Health providers are paid via salary so that any savings are retained in the system. For other providers to be able to duplicate these results we need to get providers and payers (or in many cases employers who are self insured) to change how we compensate care. This doesn’t mean paying for email in most cases but perhaps to a bundled care model.

    I don’t mind being proven wrong if it means I get to be a little less concerned about the progress of the human race. Sure, I know the 50% Sherry cites only mean 50% of the people who were successful enough to have insurance and lucky enough to be included in both a medical home experiment and Open Notes. Still, maybe it does mean less than 90% of everything is crud.

    Maybe it really is only 75%. I’m cool with that.

  • jsmith

    Embracing health 2.0. Hilarious. This puffery reminds me of the absurd situation in the late 90s, when hucksters pumped up the stock market by telling us about the future wonders of the internet (it’s technological!), completely ignoring the fact that stock market values have virtually nothing to do with technology and everything to do with psychology.
    Postponing chronic disease, folks, is mostly about the difficult, long-term slog of changing evolutionarily-designed human behavior that has become problematic in a food-rich environment. What is the hell does this have to do with computers? Nothing, of course. But of course the money must be made, and some will make it selling snakeoil. And the best way to sell snakeoil is to convince yourself it really works.

    • http://www.medicalbilldog.com Dennis (Investigator/Negotiator) at Medical BillDog

      Damn, jsmith, who peed in your Wheaties? That screed would have been scary if it weren’t so empty. Here’s my favorite line: “the difficult, long-term slog of changing evolutionarily-designed human behavior that has become problematic in a food-rich environment.” So, you and your clan bring down any impressive Mastodons lately?

  • Annie Stith (@Gr8fulAnnie)

    Hey, Susannah!

    Wow. Such comments.

    I guess if I hadn’t gotten hooked on the I’net before I became disabled, I might well be part of that percentage that’s “outside the bubble,” struggling with daily existence and having bigger things to think about than Health 2.0.

    [I will interject here that I'm not obese because I sit in front of a computer or TV all day, but because the lack of money means I can't afford five servings of fresh veggies and three servings of fresh fruit every day, and have to settle, instead, not for the fast food I also can't afford, but cheap, over-refined carbs with very little nutritional value. Gawd, when is everybody going to get that about the poor already?!? (End of rant.)]

    I live in a hi-rise for the disabled and those with low income who qualify for rental assistance from HUD. People here who I know are diabetic control their blood sugar by either skipping meals, or by swiping some of the sugar packets for the office coffee pot until they can get a pan of beans and rice cooked. If it was a decent month money-wise, there might be a ham bone floating in the pan, but there’s no meat. Heck, when my doc told me I’d need to cut back on red meat because of my cholesterol, I laughed. I haven’t been able to afford red meat in quite a while. Or all my prescribed meds, or vitamins, or supplements (that work) for my OA, or a membership at the Y for water aerobics…

    It’s so frustrating to not be able to do half the things my doc recommends. That’s part of what drives me to be an e-patient. I look for other ways to relieve pain or reduce stiffness or lose weight that I can afford to try to make up for the things I can’t. And I’m interested in my medical files because I have no idea with what kind of attitude the doc and his nurses record my not being able to follow recommendations. Do they note that it’s for financial reasons or do I look like a horribly uncooperative patient? (I suspect so from the attitude of a couple of specialists to whom I was referred and records forwarded.) And do they note all the alternative things I try and whether or not they helped?

    Sorry for the attitude, folks, but I work so hard at being as healthy as I can be under the circumstances, and hearing generalizations and being disregarded just is too much today.



  • Susannah Fox

    Thanks, everyone, for the comments.

    I’m here to learn, along with everyone else, and to provide data so that even the puffiest of puffy assertions can be confirmed or knocked down by the reality of what people are actually doing (and not doing) with available technology. Please get to know me and my work if this post piques your interest.

    Pew Internet publishes all of our reports, data sets, and presentations on our website for free. And I welcome questions, comments, and suggestions for further research. You can reach me on Twitter (@susannahfox), by leaving a comment on e-patients.net, by email or even by phone (see my staff page on pewinternet.org).

  • http://www.lisastockwell.com Lisa Stockwell

    Thought provoking comments. My take is that if the stats are correct that over 60 million Americans have looked for health care information online or shared their medical experiences with others online, you can’t ignore their need for the most accurate information delivered in the most effective way. Health 2.0 may not solve all public health issues, but it is serving the majority of the population in various ways.

    And with search and social media it is becoming easier to find out what kind of information people are seeking and address their concerns with content that provides some answers or comfort. Technology can also help the medical community work together, sharing new knowledge in an efficient way.

    I don’t think anyone believes the Internet is a replacement for person to person care or that it will solve the problems of those who don’t have the means or will to take better care of themselves. But if it is meaningful to over 60 million people, that’s reason enough to spend the energy and resources to develop it further.

  • J.T. Wenting

    All those “self diagnosis” sites and stuff like that do mostly 1 thing: feed hypochondriacs with ever more and more gruesome conditions they’re sure they’re suffering from.

    And stop (and this to doctors in general, it’s a major problem with the profession) belittling every overweight patient, telling him that all his problems will go away if he only stops eating so much.
    It’s a disgrace, it ruins patients’ confidence in their doctors (especially as in many cases their weight is a symptom of something else, not their diet (or not their diet alone)), it’s a strawman’s argument as the condition their patients are suffering from is generally NOT caused by them being overweight (at most it doesn’t help, it’s hardly ever the root cause that needs treatment).

    Case in point is my father who, on being admitted to hospital several years ago with gallbladder stones got told he should eat less and he’d have no more problems (they did remove the stones, making several serious mistakes in the process that left him impotent). He was put on a starvation diet by the hospital dietician, which didn’t work (he gained weight on their 500 calorie a day diet) at which the dietician and his doctors accused him (bedridden with 2 IV drips and a renal probe at the time) of sneaking off to the hospital giftshop to buy candy.
    And we’re supposed to trust people with our lives who make such idiotic accusations to us after already making mistakes that leave us in prolonged pain and maybe permanently disfigured?

    So we have 2 problems: websites (probably well meaning) catering to people to think up all kinds of dreadful diseases for themselves, and doctors betraying the patient/doctor confidence by not taking patients with real problems seriously.

    • http://www.medicalbilldog.com Dennis (Investigator/Negotiator) at Medical BillDog

      J.T. you get what you give. You want to call others hypochondriacs but don’t want anyone to notice your family’s obesity. Hardly ever the root cause? I think your data are skewed. I’m sure of this much, more people die of complications from obesity than from hypochondria.

  • Anonymous

    Strikes me there’s a media-message tension here.  What’s needed is a compelling narrative to convince people to live healthier lives.  Call me old-fashioned or worse, but I see the medium as secondary.  We know about the perils of smoking and obesity and the value of exercise and eating right.  But audience splinters into groups — at one end are obsessives who already eat healthy but spend hours researching how to eat more healthy (organic?  are beans really better than brussels sprouts?) and at the other are folks who don’t eat well and are oblivious to the message, whether it is on the radio, in the newspaper or at a website.  There’s a natural tendency to overprogram for the first group because of their enthusiasm and ignore the latter, which needs the most help, because of their indifference.  

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