I attended a fascinating Health Affairs (www.healthaffairs.org) briefing on “A Rapid-Learning Health System” this past Friday, January 26 here in Washington. The project was led by Lynn Etheridge and Health Affairs and sponsored by the Robert Wood Johnson Foundation (www.rwjf.org), Kaiser Permanente (www.kp.org), and the US Agency for Healthcare Research & Quality (www.ahrq.gov).

Your first question may very well be, “What the heck is ‘rapid learning’?” The vast real-world databases created by electronic health records (EHRs) maintained by integrated delivery systems such as Kaiser and the Veterans Health Administration (VHA) create a phenomenal research capacity. With literally tens of millions of longitudinal, clinical member/patient records, the combined power to understand the effect of all kinds of care practices is staggering.

As Kaiser’s Paul Wallace (also the IxCenter Board Chair) pointed out, the number of newly diagnosed cancer patients in Kaiser’s EHR each year (about 40,000) is roughly the same as the number of patients enrolled in US cancer clinical trials. As Geisinger’s Buzz Stewart wrote in the Health Affairs Web exclusive, there is a clinical trials also deal with “clean” populations (often excluding the “messy” patients with multiple co-morbidities). EHR databases can help to bridge this “inferential gap” to help us figure out what to do about those people with conditions for which the traditional scientific process doesn’t provide a good answer.

Perhaps even more important than the contribution that this database can make to helping to heal people with new cancers is the impact it could have on the woefully understudied issue of cancer survivorship (understanding the health impact of “cured” cancer on survivors years or decades later). When the clinical trial is over, researchers often stop collecting data on their “subjects,” but Kaiser has a quarter of a million longitudinal EHRs on cancer survivors. That could have a great impact on our ability to address unexplained health issues that arise from the intense therapies to which people with cancer are subjected.

But answering these kinds of questions are just the tip of the iceberg. As Archimedes (www.archimedesmodel.com) Co-Founder and Chief Medical Officer David Eddy (also one of the pioneers in evidence-based medicine) noted, while tremendously valuable, applying the “look up” method to EHR databases tells you a lot about the past and the present, but it can only tell you so much about the future if nothing new happens. This is where the miracle of modern mathematical modeling comes in.

Now I’m not going to embarrass myself by trying to explain how models like Archimedes’ work, but there are a few critical points to understand. First, there are powerful representational modeling techniques now used in every industry from entertainment to transportation to architecture, and there’s no reason why—with adequate investment and data sharing—we can’t do the same in health care. Second, these models employ techniques to integrate data from much more discrete components (such as the progression of disease on the physiological level). Third, because of that, these models have a tremendous capacity to assess virtually everything that can happen (depending on the data that we have). Just to give you an idea of the potential power, Eddy and colleagues have prospectively predicted the outcome of many clinical trials (not that he’s saying that we should just get rid of RCTs)—for an example, see Exhibits 1 and 2 in the Health Affairs January 2007 Web exclusive by David Eddy.

With EHRs, there suddenly is a vast expanse of new data that can be integrated into models like Archimedes. The combination of EHRs and sophisticated representational modeling techniques can, to paraphrase Eddy, “put rapid learning on turbo.”

As amazing as these models are at this point, they still may not help us address some of the major quality-of-care gaps in the US if they rely only on the clinical and physiological data that currently power them. We know that one of the critical reasons for poor performance on quality measures is our inability to inspire healthful behaviors. For example, we know that a substantial portion of mortality and morbidity in the US are due to three behaviors: smoking, poor diet, and lack of adequate exercise.

Luckily, the science of behavior change is evolving, and with it our ability to understand how to effect positive behavior change. What if we integrate the models developed by people like David Eddy with the behavior change science developed by people like Jim & Jan Prochaska? (In case this is new to you: The Prochaskas have not only done pioneering work on the transtheoretical model but have developed a series of science-based tools for effecting behavior change.)

At the briefing, I asked Eddy if this was possible. He remarked that, as long as we can measure it, we can integrate virtually anything into these mathematical models. Indeed, new measures of behavior change and patient activation have been developed by people like the Prochaskas and Judy Hibbard. Others, including those in government health programs, are beginning to explore that measurement arena as well.

The opportunity not only for rapid learning, but for truly transforming care is enormous. We need to push the envelope on the scope of our inputs to EHR databases. At places like Kaiser, Group Health Cooperative, Geisinger and the VHA, they already have the opportunity to tap into rich sources of patient-reported data (such as health risk assessments, secure messaging, and other online applications where consumers enter in personal health information—all of which, of course, needs to be protected as with any other human subjects research). Let’s find ways to move this agenda forward.

–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

Since research* suggests that 50% to 80% of everything that a patient hears in the doctor’s office has been completely forgotten by the time he or she gets home, it remains remarkable to me that payers don’t require an Ix after-visit summary as a condition for reimbursing clinical encounters.

For reasons such as this, the inherent logic in Ix is so compelling from both a practical and moral standpoint for many of us. However, most of the payer community is not ready to accept that logic without a substantial body of research behind it—not that any empirical evidence exists for the value of the generic clinical encounter itself.

To be fair, we first need to define in specific terms what constitutes Ix if we think that the market should recognize it. Indeed, that is the first task before the new Ix Payer & Certification Issues Workgroup, which was launched at the end of November as part of the IxAction Alliance.

The workgroup is chaired by Eleanor Herriman, MD (Chief Science Officer of Boston-based NorthPoint Domain) and includes a diverse cross-section of organizations. The Ix Payer Workgroup not only recognized this definitional need, but also realized that not all Ix is created equal—it varies both by type and level of complexity—and therefore has embarked on the more ambitious agenda of developing an Ix taxonomy.

As we build the infrastructure for identifying when and how Ix is performed, we also need to continue to build the empirical evidence base for Ix to demonstrate the value that high-quality Ix brings to people’s health. That work is also a critical part of the IxCenter’s 2007 agenda.

One of the challenges in measuring the impact of the latest Ix innovations is that the leaders often don’t have time to design rigorous, prospective studies. They just forge ahead and innovate because they know it’s the right thing to do for their patients, members, or consumers.

That poses challenges to health services researchers (and I admit to being one myself :-)), who generally would prefer to have things evaluated more cleanly or traditionally. It’s harder to tease out cause and effect when studying innovation that transpires organically or as part of lean operational development processes.

However, we should not shy away from the empirical idiosyncrasies that innovative care delivery initiatives create. Rather, we should rise to the challenge by employing a broader set of research and analytical skills to tackle these compelling research questions about new innovations. Indeed, the new care delivery strategies create opportunities for health services researchers to develop their own innovative research techniques.

I hope that health services researchers out there are up to that challenge.

–Josh

*For references on this and related research, see the IxCenter’s white paper, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm,” which you can download from the Publications section of IxCenter’s Web site (www.ixcenter.org).

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

With the 110th Congress about to get underway, it’s exciting to think about the possibilities for patient-centered health information technology (HIT) legislation. Last fall, Congressman Patrick Kennedy introduced a bill (HR 6289) that would create incentives for using personal health records (PHRs). Unlike much of the HIT legislation out there, it really focuses on consumer’s personalized information needs and enhancing the clinician-patient relationship. In particular, the bill describes requirements including that a qualifying PHR has the capability of “sending patient-specific patient education, reminders, and clinical messages to patients based upon data in the record.”

The bill, appropriately titled the Personalized Health Information Act, that was introduced in the 109th Congress likely will be reintroduced soon for the new Congress. Although it’s not clear how strong the financial incentives will be (though private & public organizations can contribute to the incentive fund with targeted information therapy (Ix) campaigns), there are several sections that are all about Ix…without calling it that. For example,

• One of the provider requirements is that (Sec. 2.c.4) “The physician (or provider) uses the QPHR as appropriate and authorized by the patient to communicate appropriate patient education and care management messages.”
• And the entire section (2.e.1.E) on “Messaging Capabilities” is all about Ix…

E) MESSAGING CAPABILITIES-
(i) EDUCATION REMINDERS- Subject to clause (v), the record is capable of sending patient-specific patient education, reminders, and clinical messages to patients based upon data in the record, but such messages shall not be sent unless such messages comply with standards adopted under paragraph (3). The Secretary shall work with the Secretary of Homeland Security and the Director of the Centers for Disease Control and Prevention to optimize the public health and emergency response capabilities of the networks created by QPHRs.
(ii) FEDERAL REMINDERS- Subject to clause (v), the record provides for the sending on behalf of Federal agencies of objective, accurate, patient-specific messages to patients concerning their health care or benefits, but such messages shall not be sent unless the messages comply with standards adopted under paragraph (3).
(iii) FUND PARTNER MESSAGES- Subject to clause (v), the record provides for the sending, on behalf of Fund partners who contribute to the Fund, appropriate patient-specific messages to consumers (with whom such partners have pre-existing relationships) concerning the patients’ health care, medications, treatments, medical devices or benefits, but such messages shall not be sent unless such messages comply with standards adopted under paragraph (3).
(iv) HEALTH PLAN NOTIFICATION- The QPHR service notifies, no less frequently than quarterly, each Fund partner that administers a health benefit plan of the individuals who are enrolled in the plan and who have a QPHR established.
(v) LIMITATION ON COMMERCIAL SOLICITATION- The record does not allow any commercial solicitations, marketing, or messages to patients unless the patient is a patient or beneficiary of the sender, uses the sender’s product with a prescription or recommendation of a provider, or has some other pre-existing relationship (as defined by the Secretary), or other messages that do not comply with standards adopted under paragraph (3), and the record ensures that every message clearly identifies the source of the content.
(vi) PATIENT OPT-OUT- The record allow a patient (or patient’s authorized representative) to opt out of receiving messages entirely or from particular sources.Honestly, I don’t have any idea what the chances are for this legislation to move forward, but at least it’s nice to know that HIT legislation is being proposed to address the ways that HIT can truly support patient and consumer empowerment.

Honestly, I don’t have any idea what the chances are for this legislation to move forward, but at least it’s nice to know that HIT legislation is being proposed to address the ways that HIT can truly support patient and consumer empowerment.

Let’s hope that this is just the beginning.

- Josh