Two online discussions forced me to return to a question that I have wrestled with for the last nine years that I have been working on information therapy (the first year-plus of that was myself referring to it as “information prescribing”): Is the term “information therapy” helping or hurting the mission and vision of the Center for Information Therapy?

The first discussion that I referenced yesterday was on the e-patients blog and the second is the proposed Healthy People 2020 objective (”Ensure that each encounter with the delivery system is accompanied by prescribed information that supports an individual’s personal health needs”).

We have struggled over the entire decade with semantic issues, as have many others with similar values and goals. For example, in collaboration with IxAction Alliance member, the Foundation for Informed Medical Decision Making (FIMDM), Karen Sepucha, PhD, and I published the white paper in 2008 titled, “Navigating a Changing Health Care System: How Consumers, Clinicians and Policymakers Can Make Sense of Shared Decision Making and Information Therapy.” The impetus for the paper came from the cringe that FIMDM and IxCenter supporters occasionally witnessed when we used variations of SDM and Ix in conversations with consumers, clinicians, policymakers, and others.

Initially, we used “information therapy” and its shorthand “Ix” because we wanted to drive home the point: Information can be powerful medicine! While we have always supported the full democratization of information, we also recognized that the vastness of the World Wide Web was not serving all consumers in all circumstances. Susannah Fox from the Pew Internet Project has described how their data indicate that consumers want information, counseling and support from professionals more so in health care than the other industries Pew studies. Susannah has also found through focus groups that consumers who are told by their physicians to stop going online do one of two things: switch doctors or “go underground.” The former may ultimately drive the change we need, but the latter is not good for care delivery; it is the antithesis of the movement toward “participatory medicine” that many of us believe is critical to reform of the delivery system.

Moreover, as I described in “Information Overdose and Other Ix-Rx Corollaries,” too much information can sometimes produce an information overdose and inaccurate information can create negative side effects. Part of what we need to do is figure out how to create efficient systems that proactively deliver information targeted to a person’s particular moment in care and tailored to their individual needs and circumstances.

It’s not easy. But we see great signs of progress, where a variety of health care organizations have created increasingly refined methods for mining data sources that can be viewed as “information triggers.” These data points — and the best ones are often those that derive from the consumer him/herself but can also come from EHRs, lab values, pharmacy data, etc. — tell us something specific about what information a particular person needs at a specific time to make a better health decision to effect a certain health behavior.

Just like much in life, information therapy is on a continuum. Some Ix is very simple — flu shot reminders (with an explanation of why it’s important) delivered every autumn to high-risk individuals — while others require much more sophisticated systems, such as Group Health Cooperative’s integration of a health risk assessment into a full-scale clinical information system to prescribe personalized Ix.

We’ll keep on working on it until it becomes an expected part of care delivery. Until then, we’ll still look forward to a healthy debate on what we should call it.

This entry was posted on Wednesday, April 8th, 2009 at 8:05 am and is filed under Healthy People 2020, Ix Definitions, Participatory Medicine, Patient-Clinician Relationship. 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.