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

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

Although the New York Times took a pass on my letter in response to a Jane Brody column January 30 (http://www.nytimes.com/2007/01/30/health/30brody.html?ex=1170910800&en=c1237335b6037a06&ei=5070), I thought others might be interested…

To complement the expert suggestions in “The Importance of Knowing What the Doctor Is Talking About” (January 30, 2007), keep in mind that most people are “patients” in the traditional clinical environment far less than 1% of any year’s 8,760 hours.

Therefore, we should maximize the value of that in-person clinical encounter with information targeted to the individual’s moment in care and tailored to their individual needs.

More specifically, a “visit prep” information prescription preceding every encounter will better prepare both patient and clinician for their 15 minutes (give or take) together. Also, research that tells us that patients forget 50% to 80% of everything a doctor says by the time they get home, so an after-visit summary reinforces key issues they discussed.

Implementing these two strategies brings us closer to the Institute of Medicine’s first recommendation from its landmark “Crossing the Quality Chasm” report for care based on “continuous healing relationships.”

–Josh