I sometimes wonder whether we complicate things that are pretty simple, by assigning more labels and new terms to things that have perfectly good labels already.
For instance, I once thought I knew what “information therapy” meant. It meant a doctor or other healthcare professional “prescribed” certain information for you to read, so you could learn about your health or mental health condition. Before the Internet, therapists called this bibliotherapy, as it usually referred to reading a certain book on depression, anxiety or the like. “Information therapy” is a fine term and all (it must be, since there’s an entire nonprofit devoted to it), but a recent blog entry over at The Health Care Blog has made me rethink whether it brings any value to the conversation.
Words must mean something unique, or else they lose all value. Look at the way Facebook and other social networks have co-opted the ordinary-looking word, “friend.” Prior to 2000, a friend was someone you knew and trusted and nearly always someone you actually knew at one time face-to-face. With its co-opted use on social networks, a “friend” now means nothing. It means someone who may have some sort of nebulous connection to you — either an acquaintance, a business associated, or even a complete stranger. It might mean your best friend, or it might mean someone you once talked to at a conference. It might mean you know them presently, or it might mean you haven’t spoken to them (even online) for 10 years. Most social networks today don’t clearly delineate the nature of the relationship and its current status.
So when I read an entry entitled, “The Great Debates,” I suspect there’ll be a lot of intelligent discussion focused around how two different philosophies and approaches might be in conflict (and how to resolve such conflict as it arises).
But when reading the definition of what “information therapy” now is in our ever-connected, 24/7 world, I find myself scratching my head:
However, while both Health 2.0 and Ix are focused on improving patients’ participation in care, they tend to come from different backgrounds. Ix tends to be “prescribed” to the patient, often by a clinician (although system-triggered Ix and consumer-prescribed — either “self-prescribed” or recommended by a peer, caregiver, etc. is also part of the definition).
Once you go down the road of “self-prescribed information therapy,” we already have another word for that — it’s called “learning” and people have been doing it for centuries on their own. Indeed, one could argue that that is one of the core strengths of the Internet (and resources like Wikipedia) — it is the world’s largest learning vehicle. Want to become knowledgeable about fly fishing? Within two hours you can find and learn everything you ever wanted to know about fly fishing.
It gets even worse when we consider the ever-changing definition of “Health 2.0.” At one time, I believed it to mean specifically Web 2.0 tools (like blogging or condition tracking) that empowered patients. PatientsLikeMe.com, for instance, is a perfect example of a “Health 2.0” site. But apparently it’s larger than that:
Health 2.0 had its start with non-health care organizations delivering content, communities and tools to consumers online—often in the absence of the health care system paying much attention. Thousands of communities about every conceivable health condition exist online, hundreds of sophisticated tools have been developed for consumers and clinicians to use, and now the ability to create and store patient data online is becoming much more prevalent.
Well, gosh, those thousands of communities have been online beginning in the 1980s, pre-Web, and certainly pre-Health 2.0. Does that make every patient community a “Health 2.0” offering? Good news for ACOR, then, as they can now claim they were at the forefront of the Health 2.0 movement in the 1990s!
And Health 2.0 seems to now be about personal health records, too, something drkoop.com tried doing in 1999. It didn’t work then, and it’s not really showing much signs of life today either. As e-Patient Dave can tell you, the personal health record tools available today — and their connections to the electronic medical record — leave a lot to be desired.
I should know about this stuff, as I created some of the first patient tools on the Internet in the form of depression screening quizzes that allowed you to determine your depressive mood (and track it over time) in 1996. Yes, thirteen years ago we had patient empowerment tools online. We still call them what they actually are — screening tools and trackers.
I have no problem with new terms being invented to co-opt existing behaviors and ways of interacting online. But when “information therapy” morphs into simply learning and “Health 2.0” describes patient empowered communities that have been around for decades, it does start making me wonder whether these terms actually have much meaning behind them. And whether anything can be characterized as a “great debate” when the distance between the two sides seems almost non-existent (except perhaps on some technical or technicality level).
I think it’s great to encourage physicians and other health care and mental health professionals to “prescribe” information to their patients. Every professional should feel comfortable prescribing information to patients who need it, because as the Pew Internet & American Life Project tells us, patients are often seeking out the professional opinion of those they already trust. (Why turn to WebMD when you already have a doctor you know, respect and trust?) Not every patient will have the resources, skills or ability to become as “empowered” as some of us might like. And even an empowered patient needs a starting point — why not with a doc?
But let’s try and keep our terms and definitions more clear and concise, so everything doesn’t just morph into one big thing, which can mean anything to anyone who happens to be giving a talk on the subject. Words must mean something. Consumers don’t “prescribe” information to one another — they share their stories, recommendations, and experiences. To jam this set of behaviors into the information therapy model and call it “self-prescription” seems to me to be reaching. It confuses the model and the philosophy, and brings muddiness to what used to be a pretty clear concept.
Read the full entry: Health 2.0 Meets Ix–The Great Debates