African American men have the highest incidence and death rates for prostate cancer than any other racial/ethnic group in the US.  How can information therapy (Ix) promote increased health equity in prostate cancer outcomes?  One of the functions of Ix is to deliver relevant health information to consumers where they are – in this case, the barber shop.

Research suggests that community-based education efforts by barbers could increase prostate cancer screenings among African American men.  Barbers were trained on an educational intervention based on the principles of Paulo Freire’s critical pedagogy.  In this ongoing pilot study, barbers ask male clients over the age of 40 if they have been screened for prostate cancer.  Clients who have not been screened are educated about prostate cancer and informed that they are a candidate for screening.

The training resulted in a statistically significant increase in barbers’ knowledge of prostate cancer.  Screening rates are not yet available, but preliminary results from qualitative interviews indicate increased knowledge about prostate cancer in clients.

If you are interested in promoting health equity, join us at the 7^th Annual Ix Conference in Washington, DC on June 11 and 12.  The Ix and Health Disparities track on June 12 will address promising new interventions that have been developed to narrow health disparities.

Lots of interesting Ix-related stories have been in the media recently, but none more dramatic than the study from the Archives of Internal Medicine that demonstrated a significant relationship between inadequate health literacy and all-cause mortality in seniors. In fact, Baker et al (7/23/07; abstract at http://archinte.ama-assn.org/cgi/content/short/167/14/1503) found that literacy is a more powerful predictor of death than education.

The authors also highlight past research that links inadequate health literacy to less knowledge and worse self-management skills for people with chronic disease.

This research should reinforce the call to action to deliver information to people that is tailored to their individual needs. Although using plain language is one useful strategy, effective tailoring requires multiple tactics–such as understanding individual needs and preferences better, addressing different learning styles, and delivering information through different media (print, electronic, video, audio, phone, etc.).

With the support of the California HealthCare Foundation, the United Hospital Fund, Kaiser Permanente, and the Group Health Community Foundation, IxCenter will launch a Patient-Centered Health Information Technology Initiative later this year. We will be assisting a diverse range of organizations in implementing HIT applications that focus on engaging consumers in care delivery. Although it will surely come up with all sites, particularly in our work with safety-net populations, we anticipate learning a lot about how to overcome health literacy barriers with innovative solutions.

In the interim, I’d love to hear your ideas for delivering tailored information in such situations.

–Josh

What do consumers really want? To answer that question in health care, we might want to look at leaders in other industries that have developed great reputations with consumers.

This past Sunday’s New York Times Magazine had a cover story about Toyota and how that company–now with a market capitalization of $240 billion, which is greater than GM, Ford, Daimler-Chrysler, Honda and Nissan combined–has created the most profitable car company in the world. Toyota goes to extraordinary lengths to understand consumers’ needs.

In the NYT piece, Jon Gertner writes, “Toyota’s chief engineers consider it their responsibility to begin a design (or redesign) by going out and seeing for themselves–the term within Toyota is genchi genbutsu–what customers want in a car or a truck and how any current versions come up short.” Although Toyota’s Sienna minivan already was a remarkably successful product line, Gertner proceeds to tell his readers how the lead North American engineer took on the task of redesigning it by driving “the Sienna (and other minivans) in every American state, every Canadian province, and most of Mexico.” He ultimately logged 53,000 miles over 3 years in order to understand how conditions and consumers’ needs varied across the entire continent.

Likewise, Intuit–the maker of the wildly popular financial software Quicken and TurboTax–also believes that effective consumer research and development requires what they call “follow-me-home research.” In order to understand consumer needs, Intuit insists that you have to observe people directly in their everyday settings rather than just trusting self-reported survey data. Intuit is now taking this approach in developing their health care consumer finance software tools.

At our 5th annual information thearpy (Ix) conference last fall, the Robert Wood Johnson Foundation provided the IxCenter with a grant that allowed us to bring consumers to present directly to our audience of health care professionals. By every account, their perspectives were invaluable to the diverse group of attendees, because it helped these professionals to tune in to what consumers really need as health care organizations design innovative Ix initiatives.

I’m hopeful that we’ll continue to be able to bring real-world patients, members, and consumers to our annual Ix conference. Over time, I also hope that we’ll have more opportunities to spend time observing and learning from people in their homes and doctors’ offices.

The more we do that, the more we’ll learn. The more we learn, the more we can help.

–Josh

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

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).