e-Patient Dave made an important point on the e-patients.net blog yesterday, “The I in IT stands for Information.” It’s a good reminder, as is the first comment to his post that, “Data is only information if you can use it.”

We’ve been trying to drive home both these points for a long time, such as in the 2005 California HealthCare Foundation Issue Brief, “Lost in Translation: Consumer Health Information in an Interoperable World.” From the overview:

Each day, more people seek information from online sources than from their own physician. But availability of information does not necessarily translate into understanding or taking appropriate actions. While momentum builds for a National Health Information Network infrastructure, it remains unclear what role patients will play in the interconnected world of providers.

As clinical information becomes more directly available to consumers through the Internet or through other electronic communications from providers, a mechanism for meaningful, consistent translation to engage consumers is lagging. For example, a diabetic patient accessing his personal health record may find that a recent hemoglobin A1c test is 10% but what does the patient do with this information? Are there ways to help patients understand the data — and the actions they should take — without having to schedule a visit with a provider? Are there ways of ensuring that an Internet search could supply patients with meaningful information?

This 2005 report examines consumer-based information and what could be done to better integrate consumer health information standards into the NHIN framework.

This also brings us back to the fervent discussion that has brought up important insights earlier in the week on the e-patient blog as well as some on The Health Care Blog (in response to the “Health 2.0 Meets Ix” speaker posts on “Building Health 2.0 into the Delivery System”) and additional points I’ve addressed here.

What is critically important is never to think information therapy (Ix) is just about the information, let alone just about the data. There is a building process at work in Ix that begins with data, evolves to information, gradually builds into knowledge, ultimately driving behavior. Ix advocates make no argument that the data-information-knowledge-behavior sequence is automatic.

Quite the contrary. We are fervent believers that good information itself is only one ingredient in effective decision making or behavior change. In fact, some of our most active IxAction Alliance members have developed entire bodies of work on how to do that, such as the transtheoretical model of behavior change or the science of shared decision making.

We also recognize that, as the famous marathoner-cardiologist-philosopher George Sheehan once said, “Each of us is an experiment of one…” While I vouch for his comment in terms of its original target (marathon training), I think it has much broader applications as we think about the diverse needs of the population in terms of how people learn, use information, make decisions, and behave.

This entry was posted on Friday, April 10th, 2009 at 8:55 am and is filed under Behavior Change, Decision Support, Ix Definitions. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.