The IxCenter published a white paper a few years ago entitled, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm” (available at http://www.ixcenter.org/publications/whitepapers.cfm). In it, we detailed the emprical evidence that supports the Ix role in addressing each of the 10 rules that Institute of Medicine (IOM) laid out for health care delivery system redesign.

As Ix has matured, we have found new ways that Ix has directly addressed the IOM/Quality Chasm call to action. Perhaps most importantly, the IOM’s first rule for system redesign was to have “Care based on continuous healing relationships.” Rather than just interacting with health care professionals in traditional visits specific to a particular acute issue, people should have mechanisms for ongoing contact wherever and whever they need it.

In this graphic, iom-rule-1-continuous-cycle-w-20.ppt, I offer one way to think about how Ix can advance continuous healing relationships. Specifically, Ix for visit preparation can be used to better prepare patient and clinician for an in-person clinical encounter. Since we know that 50% to 80% of everything a doctor tells a patient is completely forgotten by the time the patient gets home, the Ix after-visit summary is critically important for reinforcing the key pieces of information that transpired during the visit. Through PHRs and other patient-centered HIT tools, Ix can then be delivered for health promotion, risk reduction and ongoing care management to help maintain a continous cycle of care.

It raises some questions worthy of discussion…

Efficacy of the Model: Does you think this model works? Can it move us from episodic, disjointed encounters with the delivery system to continuous healing relationships?

Reimbursement and Infrastructure: Does an infrastructure exist to support this cycle of care? Does the current reimbursement system create too many perverse incentives to prevent this model from flourishing? Can the patient-centered medical home model (being advocated by the primary care medical societies and others) provide an effective mechanism for encouraging this kind of care delivery?

Fit with Health 2.0 Innovations: What do you think about the potential role of the various Health 2.0 activities (e.g., targeted search, content tagging, social networks, etc.) that I have laid on top of this model? Are there new tools that exist (or will soon) that will help to get us there more quickly than working through the traditional care delivery system?

I’ll be interested in your thoughts.

–Josh

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

Following up on Tuesday’s posting, another question that came up a few times in our webcast, “MyHealth, Circa 2007: Consumer Needs and Market Responses in eHealth,” related to consumer privacy concerns.

I believe three things about privacy and security related to online personal health information (PHI).

1. Every provider, system, Web site or other entity that collects consumers’ PHI must invest time and resources to protect PHI and make a firm commitment to ensuring its privacy and security.
2. It can be done effectively–if done right, these electronic entitites should be able to protect PHI better than more traditional mechanisms for storing PHI. Many successful examples already exist in health care, but we can see even more examples in other industries. After all, it wasn’t long ago that experts said that people would never transmit credit card information online in order to buy books–yet Amazon seems to have a few customers.
3. Ultimately, what will make the difference for consumers is the value of the online tools. Most people who use online banking and shopping cannot imagine ever going back to the old way of doing business even though there always exists some risk for identity theft, etc. If online health tools provide consumers with clear, understandable, useful information that meets their particular needs, they will be willing to assume the minimal risk associated with online tools that make a strong commitment to protecting their PHI.

Let me be clear: I absolutely believe that consumers’ privacy and security concerns are real and critically important issues. We should and can address them fully.

–Josh

We held a public webcast on this topic today. Susannah Fox, Associate Director of the Pew Internet Project, not only shared valuable insights but also some of Pew’s as-yet-unpublished data. The presentations and the audio recording from both of our presentations will be available on our Web site in the near future.

We had nearly 100 unique logons to the webcast and more than 25 questions, so we didn’t have time to answer all of them. Over the next few days, I’ll try to answer questions we didn’t get to and elaborate on a few that I have been thinking about for various reasons. Also, Susannah Fox will post comments on this blog (as time allows) as well…although I’m sure that you’ll need to tune in to her upcoming Pew reports (available at www.pewinternet.org) to get all her insightful thoughts.

Q: Why can’t we have a way for doctors to upload my personal health records to a private page on a social network site that I can then share with other providers or people in my community?

JJS thoughts: This is a great idea, and clearly an activity that would support a much more collaborative care environment that would help improve (to paraphrase Dartmouth’s John Wasson) “same-page care” (getting clinicians and their patients on the same page). Unfortunately, there has been little progress in this arena outside of some integrated delivery systems (perhaps Group Health Cooperative in Seattle being the most advanced example). Some of the organizations that Wasson works with through a couple of innovative initiatives (see www.howsyourhealth.org and www.idealmicropractice.org) are getting at this in different ways as well.

No doubt part of the reason is that an infrastructure doesn’t exist to support it, and we’re working on two aspects of that infrastructure. First, we need to address the consumer-facing side of IT interoperability so that we can effectively connect consumers to health content that they can make sense of. I wrote an Issue Brief for the California Health Care Foundation about this issue (see “Lost in Translation: Consumer Health Information in an Interoperable World” at http://www.chcf.org/topics/view.cfm?itemID=114624).

The second infrastructure piece that we are trying to address is the payer side of the equation by creating technical specifications to define what constitutes Ix. The goal of our Ix Payer Workgroup is to provide guidance to pay-for-performance, provider recognition, and other programs so that they can recognize when providers, organizations, or tools provide people with information that supports their information needs with respect to decision support, behavior change, or other health needs.

I’ll address other questions tomorrow and in the days ahead.

–Josh

With Revolution Health launching its new consumer portal, a newspaper reporter called me earlier this week to ask what I thought about new efforts such as this….

It’s clear to me that—even though they generally don’t express it this way—consumers are clamoring for information therapy (Ix). And just to be clear, Ix is not simply a shorthand for health information. Ix involves delivering information targeted to a person’s specific moment in care and tailored to the individual’s particular needs.

A wide variety of consumer research makes it clear that consumers are hungry for health information. For example, Susannah Fox from the Pew Internet & American Life Project (www.pewinternet.org) has previously described a “Dr. Google phenomenon” in that, in a typical day, more people go online to get health information than visit doctors to get answers to their health questions.

I fully support the democratization of information ushered in by the Internet and other forces, but I also realize that it’s not fulfilling the needs of many consumers. Most consumers aren’t interested in generic health information. They want answers to specific questions at a particular moment in care that relate to people in their specific circumstances.

To date, the Internet hasn’t delivered that. It’s akin to having a garden with plants, flowers and vegetables that need varying amounts of water and the weather gods delivering a monsoon.

Part of the reason that the term “information therapy” has value is because of the corollaries between it and medication therapy. Information overload can result in an “overdose.” Consumers reading the wrong information can experience negative “side effects.” The right kind and amount of information depends on the specific individual, which means that we often need to “titrate the dosage,” much the same way doctors might adjust the dose of warfarin (Coumadin) for patients with atrial fibrillation (an irregular heartbeat).

Going online for health information generally involves (at least) four challenges. First, can you find the information you need? Again, it’s not hard to find information, but it’s another thing to find it highly specific to your need at a particular time. Once you find it, do you understand it? Has it been provided to you in a way that you can make sense of it? Third, there’s the issue of whether you can remember it.

Finally, even if you can find, understand and remember the information you need, you still may need help in contextualizing it for your own situation. That’s why there often is value in having your personal health library as part of bidirectional communication system with your clinician (of multidirectional to the extent that it involves multiple care professionals). With all that in place, then you’re ready to act on the information to improve your health, decision making and healthy behaviors.

The answer I had to give to the reporter is “I don’t know.” It’s far too early to tell whether Revolution or Google Health will create the kind of navigational support that will guide consumers to the Ix they need. At the very least, however, the fact that people with the resources of Steve Case and Google are pouring money into finding answers tells us that there’s a lot of interest in figuring this out.

There’s no doubt that much research remains to better understand what the optimal dose, frequency, and duration of information prescribing is for people in different circumstances. We are beginning to pursue this as part of our Ix research agenda and, when we figure it out, we’ll be sure to let you know.

–Josh

The Center for Information Therapy (IxCenter) holds periodic public webinars in addition to our monthly IxInsights webinars for IxAction Alliance members. Typically, we get 20-40 participants for these sessions. Yesterday, we sent out a notice about a webinar we’re holding on January 23 on “Personal Health Records (PHRs) and Information Therapy: Transforming Health Care.” Less than 24 hours later, more than 100 people have signed up.

I’m certainly not the first person to suggest that PHRs have the potential to be a major disruptive force in health care, but there are many reasons to believe that the hype behind this “next thing” actually has some legs. Although the focus of many health information technology (HIT) advocates over the last few years has been on the provider or system-oriented electronic health record (EHR), it’s the PHR that actually has the potential to dramatically change the organization of health care delivery.

Direct access to, and control over, one’s personal health information (PHI) could be another catalyst in the democratization of health care, similar to the way that the Internet has democratized information flow (regarding health and everything else).

However, also like the Internet, the PHR’s potential may be limited in health care if we don’t find ways to make PHI more than a series of data points swirling around some consumer portal. The PHI must be conveyed so that it is understandable, usable and meaningful to the average consumer. If it exists in a vacuum, it will have limited utility.

One of the critical aspects of information therapy (Ix) is figuring out how to contextualize the PHI by connecting it to content. Moreover, those who have a stake in consumers using PHRs to better manage their health need to think about how to deliver proactive streams of information targeted to consumers’ specific moments in care and tailored to their individual needs. This dual functionality–contextualization and bidirectional communication–is critical to enabling PHRs to fulfill their promise.

It would be valuable for the audience of this blog to hear some stories from consumers and clinicians about how this has played out.

–Josh