The (not huge) world of Health 2.0, participatory medicine and ePatients has been fretting itself about a comment Susannah Fox (all hail) elevated into a post called “What’s the Point of Health 2.0”.
Here’s an excerpt from the comment from DarthMed,
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.Continue reading…
If you hate HIPAA, it’s your lucky day. Paul Ohm is handing you ammunition in his article, “Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization.” His argument: our current information privacy structure is a house built on sand.
“Computer scientists…have demonstrated they can often ‘reidentify’ or ‘deanonymize’ individuals hidden in anonymized data with astonishing ease.”
Ohm’s article describes HIPAA, in particular, as a fig leaf – or worse, as kudzu choking off the free flow of information.
“[I]t is hard to imagine another privacy problem with such starkly presented benefits and costs. On the one hand, when medical researchers can freely trade information, they can develop treatments to ease human suffering and save lives. On the other hand, our medical secrets are among the most sensitive we hold.”
Jen McCabe Gorman drew a picture at HealthCampDC last that I really liked. Luckily, I found this image of her Medicine 2.0 presentation, so nobody has to decipher my sketch.
The one difference is that, on Friday, Jen pointed out that the outer square ("content") is Health 1.0 and Health 2.0 begins with the "community" square. After reading her research paper, I now understand that the next inner square is Health 3.0, or content + community + commerce and the final, innermost square is Health 4.0, which would add coherence to the equation. Health 4.0 in this model is the "evolutionary stage connect[ing] the real world of brick-and-mortar systems with the virtual world of online services."
The paper is well worth a read, whether you agree with this model or not. I’m going to have to think about the following points, for example:
Another weakness of current Health 2.0 initiatives is the tendency of communities to attract similar people. Many focus on connecting "like-minds," relatively homogeneous groups such as patients with the same diagnosis or physicians in the same subspecialty. Similar groups then generate very similar content. Users become settled and ‘comfortable’ and thus less inclined to venture out and advocate for other consumer groups and sytemic change.
Is it "disordered" behavior to Google your doctor? An article in JAMA suggests that doctors should be on their guard.
The Journal of the American Medical Association recently published an article about how doctors should be aware of how they are portrayed online and consider taking steps to manage their digital identities.
It is an article that, for the most part, could have been written about any profession with its warnings about “slanderous information published about someone with the same name” or “by a vengeful…colleague or ex-lover.” And the advice given is also familiar: create your own Web page to be sure correct information is available about you and use appropriate privacy settings on social network sites.
The Pew Internet Project released the latest estimate for the e-patient population: 75 percent of internet users. Here are some details from the survey.
My colleagues recently updated our top three trend charts: Who’s Online, Internet Activities, and Daily Internet Activities.
Two of the new data points relate to health and health care. The October-December 2007 national phone survey shows that 75 percent of internet users answered yes to the single-line question, "Do you ever use the internet to look for health or medical information?"
Ten percent of internet users say they searched for health information "yesterday," which in a tracking survey like this one yields a picture of the "typical day" online. Health has moved up in the "typical day" list (from 7 percent in 2006 to the current 10 percent of internet users), but for most people the average day includes lots of emails (60 percent of internet users), general searches (49 percent), and news reading (39 percent) if they are online at all (30 percent of internet users are offline on a typical day).
What are the social and psychological factors that affect how people are treated — or
even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, and so I wanted to share what I have learned from three leading thinkers: Peggy Orenstein, Dr. Jeffrey Lin, and Dr. M. Chris Gibbons.