e-Patients and Ix
By Josh Seidman | Popularity: 14%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.

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