The social networking pioneer Dan Hoch (who co-founded the famous BrainTalk Communities site) posted a provocative commentary on e-patients.net today titled “Information Overload: Problem or Not?”

Hoch notes that the information overload across industries has given rise to the Information Overload Research Group, which is dedicated to “reducing information pollution.” I agree with Hoch that the Internet’s information democratization has been an important driving force behind what he terms the “e-patients movement.” No doubt that is a critically important contribution.

I would never suggest that consumers should be prevented from unfiltered information. But availability of all information on a topic does not equate with real access to meaningful, usable information for everybody. For some people, OD’ing on information may not be possible but many people would like to get guidance from other sources–that could be their personal physician, another health care professional, a community health worker, or another person who shares the condition.

As stated on this blog earlier in the week, Susannah Fox noted that Pew Internet Project data demonstrate that 80% of Internet health information seekers turned to a professional in a time of crisis, and that this figure is much higher than any other information that Pew studies.

Those of us who advocate for information therapy (Ix) never suggest that information should be available “by prescription only.” Information prescriptions are simply another tool, designed to help people navigate the vast information that exists in cyberspace and elsewhere.

There’s been a really passionate and constructive dialog transpiring on The Health Care Blog triggered by Pew Internet health expert Susannah Fox’s post there on “E-patients can and will revolutionize health care.” I have weighed in with a couple of observations connecting what Susannah and many advocates describe as “e-patients” with the goals of information therapy (Ix).

The first post focused on how Ix can facilitate e-patients’ connections with their clinicians:

Peter’s point is important because a reluctance of clinicians (and/or systems to support them) to embrace patients’ use of new technologies often leads to “parallel play” in health care–where people end up pursuing two parallel tracks for tackling their personal health. In fact, Susannah’s Pew research demonstrated that–when told by their physicians to stop going online–most consumers either said they’d either switch doctors or “go underground.” In other words, consumers end up using the Web to address their health care needs but don’t talk about it with their clinicians–a recipe for (at best) inefficient care.

That’s why developing strategies to integrate targeted health information and personal electronic tools into the care delivery process (a.k.a. information therapy or Ix) is so important and has so much potential. That integration of patient-centered care and HIT is the focus of the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care,” (June 12-13 in Washington, DC) where Susannah and other advocates for e-patients will be presenting.

The second post was really to help clarify that Ix is not meant to impede the efforts of e-patients–in fact, it’s just the opposite: Ix tries to help provide a better infrastructure for e-patients to gain support from other resources…

I completely agree with Cheryl that it was imperative for her to take control of her own care. And thank goodness she did! I have heard Cheryl’s personal story before, and she provides a powerful demonstration of the potential for e-patients to change the course of their own lives.

Regarding John’s questions, for some people, online searching works fine. However, many others report that they feel lost in the maze of information spun by the World Wide Web–reporting problems with some combination of: finding the most relevant information for their specific needs; understanding it; remembering it; and/or contextualizing it.

That’s why consumer surveys consistently report that, when asked from where they would most like to get information, consumers’ first choice is their own physicians.

That’s not at all to say that consumers shouldn’t access information on their own; I certainly do it all the time and I think everybody should do so as much as they want. In fact, one of the reasons why we’re holding this year’s Ix conference at the Newseum is because of how fervently we believe in consumers’ free access to information–thus the link to the celebration of the First Amendment.

But most consumers would prefer that their clinicians could support them in that process through: pointing them in the right direction; sifting through questions that arise together; putting into context for their particular situations; etc.

After a long build-up, Google finally launched its personal health record (PHR) for public consumption. There has been great anticipation that Google’s entry into the health care space could be the most disruptive innovation to a delivery system nearing a state of disarray. After all, before Google had invested even one dime in health care, each day more people were going to Google to answer their health questions than were going to a doctor.

The amazing economic and information transformation that Google has achieved in less than a decade coupled with the delays in launching Google Health led to perhaps unrealistic expectations. A quick review of what it has to offer leaves me with several questions…

• (The biggest question) Given that there is nothing in my Google Health profile right now and none of the links to Google’s partners provide any personal health data for me, what benefit is there for me to using Google versus a spreadsheet on my own laptop?
• Will consumers who have experienced auto-populated PHRs (e.g., via providers that have transferred EHR data to a secure patient portal) be interested in starting all over again (even if they can import that data–such as with Cleveland Clinic patients)?
• How big of a challenge will it be for Google to get consumers to trust the corporate behemoth with their personal data?
• Why does a search for “diabetes” in the Google Health search engine generate completely different content for me than looking under “diabetes” in Google’s “Health topics”?

This last question is particularly perplexing to me. Google Health tells me that one of the things it allows me to do is “Review trusted information on diseases and conditions and learn about possible medication interactions and other topics to talk your doctors about.” But I don’t know how they decide what is trusted information and why they direct me to different content depending on which way I decide to enter Google searching.

Part of the aforementioned unrealistic expectations is because health care is more complicated than many other information industries. There’s no doubt the health care delivery system is in dire need of dramatic change and that Google’s sheer power as an information broker has tremendous potential to shape any field that is so dependent on finding good information. I hope this is just the beginning.

At the 7th Annual Information Therapy (Ix) Conference, “WIxRED: Next-Generation Patient-Centered Care,” participants will hear from national leaders in implementing much of what Google Health is trying to do: Deliver the right information to the right person at the right time. Take a look at the agenda and register today.

In response to a column in The New York Times last week (http://www.nytimes.com/2007/05/24/fashion/24Cyber.html), I wrote the following letter to the editor (for which they apparently aren’t publishing any letters):

Regarding “Visits to Doctors Who Are Not in, Ever” (May 24), democratization of information has made health content widely available—some would describe this a blessing and others a curse. The question is how do we steer people to information that is accurate, comprehensive, relevant, understandable, and useful?

Empirical research we’ve conducted on diabetes Web sites suggests that the guidance offered by most “experts”—such as a “trustworthy” sponsor, the currency of the content, or the process for updating it—provides little insight into the content’s actual accuracy or comprehensiveness.

Innovative collaborative filtering approaches can be effective, but they also have limitations—in part due to the complexity of medical science and its pace of change. Objective, systematic instruments now exist that could be scaled to provide critical guidance to consumers. These two approaches can complement each other and help people navigate life-and-death matters for themselves and their loved ones.

Since I get more than 150 words here, I’ll expand a bit…. First some quick background: The research I refer to is summarized in a white paper on “The Mysterious Maze of the World Wide Web” on the www.ixcenter.org Web site and the more scientific papers are available from the peer-reviewed Journal of Medical Internet Research (www.jmir.org).

It’s reasonable to approach the evaluation of Web site information quality like many other scientific questions where the answers (to “what is high-quality content?”) are not always straightforward. We can triangulate by using multiple methods to answer the question.

Specifically–and as I proposed in the original research–we can combine three kinds of measurement: structural measures of quality to give a generic content threshold test; performance measures of accuracy and comprehensiveness for specific conditions; and assessment of consumers’ perspectives on content in terms of functionality, understandability and overall utility.

In my original work (before the “Health 2.0″ space existed) , I had envisioned this being done more though random consumer survey methods, but the collective filtering approach is considerably more efficient, even if less scientific.

Bringing these different strategies together will provide everybody with a lot more guidance about health information quality, the first ingredient for good information therapy.

–Josh