Paul Wallace (now Medical Director for Health & Productivity Programs at Kaiser Permanente and Chair of the IxCenter Board of Directors) closed out the first day of last week’s 7th Annual Ix Conference with some insights on how we can modernize health care effectively.

He noted that he came of age as a physician during what he termed “Health 0.0.” Although much of health care is now being practiced in a “Health 1.0″ mindset as information flows more freely, there is still a long way to go until we’ve reached the Health 2.0 goals of on-demand, 24/7 access to information that can be democratically created.

Paul pointed out that we need to figure out how to hold onto the close in-person relationships from 0.0, and build the information flow from 1.0 as we create the social networks and real-time information access of 2.0. The goal they all have in common is building trust–one of the most important elements in an ideal health care delivery system.

Ideally, the new tools of Health 2.0 will actually help us do a better job of meeting the demands of 0.0 by creating more efficient ways to allow for personalized health care. How can new technologies enhance our ability to take care of people one patient at a time?

I was on a panel today at the Chronic Care & Prevention Congress put on by the World Congress. The session’s title was “Innovative Technologies Showcasing Results in the Management of Chronic Care Shaping Future Policy to Drive Innovations in Healthcare.”

The lead presenter for our panel was the always insightful Joe Coughlin, PhD, of the MIT Age Lab. Joe has a lot of thoughtful and out-of-the-box things to say, but I think they boil down to the basic message that people designing health care behavior change interventions need to “meet people where they are” (my words) and they need to be “fun” (Joe’s words).

I particularly liked Joe’s closing slide on the disconnect between chronic care management today and consumers’ values (particularly the values of baby boomer women–who Joe says make on the order of 90% of the health care decisions in the US…that seems a little bit high to me, but his point is well taken). I think I’ve gotten most of this right–if I’ve mistaken anything, I hope Joe can correct me. The today is first and the consumer values are second in each dichotomy below.

• Data intensive vs. Useful knowledge
• Empower physicians vs. Empower consumers
• Trust authority vs. Trust experience
• Populations based vs. Personalized services
• Physician-patient-centric vs. Social networks
• Hospital & home focus vs. Ubiquitous
• Deliberate speed vs. Internet time
• Disease & illness care vs. Proactive vitality (wellness)

I fundamentally agree with Joe on his insights, although–as with many things–the current state of the chronic care management world has probably begun to move away from the left side a little bit already. What will be interesting to see is how many progressive provider organizations and other health care institutions proactively move toward the right side of these dichotomies. If not, consumers likely will eventually get fed up with providers and turn elsewhere (e.g., the Internet, Wal-Mart, Health 2.0 companies, etc.) to get what they need.

There’s been a really passionate and constructive dialog transpiring on The Health Care Blog triggered by Pew Internet health expert Susannah Fox’s post there on “E-patients can and will revolutionize health care.” I have weighed in with a couple of observations connecting what Susannah and many advocates describe as “e-patients” with the goals of information therapy (Ix).

The first post focused on how Ix can facilitate e-patients’ connections with their clinicians:

Peter’s point is important because a reluctance of clinicians (and/or systems to support them) to embrace patients’ use of new technologies often leads to “parallel play” in health care–where people end up pursuing two parallel tracks for tackling their personal health. In fact, Susannah’s Pew research demonstrated that–when told by their physicians to stop going online–most consumers either said they’d either switch doctors or “go underground.” In other words, consumers end up using the Web to address their health care needs but don’t talk about it with their clinicians–a recipe for (at best) inefficient care.

That’s why developing strategies to integrate targeted health information and personal electronic tools into the care delivery process (a.k.a. information therapy or Ix) is so important and has so much potential. That integration of patient-centered care and HIT is the focus of the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care,” (June 12-13 in Washington, DC) where Susannah and other advocates for e-patients will be presenting.

The second post was really to help clarify that Ix is not meant to impede the efforts of e-patients–in fact, it’s just the opposite: Ix tries to help provide a better infrastructure for e-patients to gain support from other resources…

I completely agree with Cheryl that it was imperative for her to take control of her own care. And thank goodness she did! I have heard Cheryl’s personal story before, and she provides a powerful demonstration of the potential for e-patients to change the course of their own lives.

Regarding John’s questions, for some people, online searching works fine. However, many others report that they feel lost in the maze of information spun by the World Wide Web–reporting problems with some combination of: finding the most relevant information for their specific needs; understanding it; remembering it; and/or contextualizing it.

That’s why consumer surveys consistently report that, when asked from where they would most like to get information, consumers’ first choice is their own physicians.

That’s not at all to say that consumers shouldn’t access information on their own; I certainly do it all the time and I think everybody should do so as much as they want. In fact, one of the reasons why we’re holding this year’s Ix conference at the Newseum is because of how fervently we believe in consumers’ free access to information–thus the link to the celebration of the First Amendment.

But most consumers would prefer that their clinicians could support them in that process through: pointing them in the right direction; sifting through questions that arise together; putting into context for their particular situations; etc.

After a long build-up, Google finally launched its personal health record (PHR) for public consumption. There has been great anticipation that Google’s entry into the health care space could be the most disruptive innovation to a delivery system nearing a state of disarray. After all, before Google had invested even one dime in health care, each day more people were going to Google to answer their health questions than were going to a doctor.

The amazing economic and information transformation that Google has achieved in less than a decade coupled with the delays in launching Google Health led to perhaps unrealistic expectations. A quick review of what it has to offer leaves me with several questions…

• (The biggest question) Given that there is nothing in my Google Health profile right now and none of the links to Google’s partners provide any personal health data for me, what benefit is there for me to using Google versus a spreadsheet on my own laptop?
• Will consumers who have experienced auto-populated PHRs (e.g., via providers that have transferred EHR data to a secure patient portal) be interested in starting all over again (even if they can import that data–such as with Cleveland Clinic patients)?
• How big of a challenge will it be for Google to get consumers to trust the corporate behemoth with their personal data?
• Why does a search for “diabetes” in the Google Health search engine generate completely different content for me than looking under “diabetes” in Google’s “Health topics”?

This last question is particularly perplexing to me. Google Health tells me that one of the things it allows me to do is “Review trusted information on diseases and conditions and learn about possible medication interactions and other topics to talk your doctors about.” But I don’t know how they decide what is trusted information and why they direct me to different content depending on which way I decide to enter Google searching.

Part of the aforementioned unrealistic expectations is because health care is more complicated than many other information industries. There’s no doubt the health care delivery system is in dire need of dramatic change and that Google’s sheer power as an information broker has tremendous potential to shape any field that is so dependent on finding good information. I hope this is just the beginning.

At the 7th Annual Information Therapy (Ix) Conference, “WIxRED: Next-Generation Patient-Centered Care,” participants will hear from national leaders in implementing much of what Google Health is trying to do: Deliver the right information to the right person at the right time. Take a look at the agenda and register today.

Will the biggest disruption in health care be an Internet-based health care industry? We already know that more consumers get answers to their health care questions on a daily basis from the Internet than from their doctors. But do we think that online tools will evolve enough to allow consumers to organize and make sense of that information without trained professionals?

Will the trend toward “convenience care” (pharmacy- or mall-based walk-in clinics) have the greatest impact on how providers organize care delivery? Will they need to re-think the way they practice medicine to meet new consumer expectations?

Maybe CMS’s requirement that hospitals begin publicly reporting patient experience data in 2008 will forever change how hospital view patient-centered care. Will hospitals finally find that being truly patient-centered has a business ROI?

Will consumer control over their own health information via personal health records (PHRs) alter the historical information asymmetry and allow them to control their own health care lives? What needs to be done to make sure that PHRs actually fulfill their potential as a disruptive force given that personal health data availability by itself will have a marginal impact?

Will the evolution of electronic health records (EHRs) and a robust interoperable health information exchange dramatically change health care by increasing connectivity among systems, providers, and others? Or, will we just create a process for transferring 1’s and 0’s on top of poor models of health care delivery?

Will the boom in biomonitoring/wireless devices (the so-called “healthcare unbound” space) revolutionize health care by allowing consumers to access the health care they need anytime, anywhere, and any way they want it?

Maybe the answer lies in more ubiquitous technologies. Could expanded use of cell phones and the application of tailored automated telephony allow us to reach a broader audience more conveniently, thus increasing the likelihood that average consumers will be more activated about their health care needs?

Can we more effectively engage consumers in better managing their own health by learning from Hollywood or video games about how to draw people in through entertainment? By doing so, can we make health care “fun” or at least truly engaging?

Can we find new payment structures to eliminate the perverse incentives that plague our current health care delivery system? Or, will people find ways to game any new system we design…or will entrenched interests simply prevent new systems from coming into fruition?

Is there any hope at all for finding a way to cover the growing number of uninsured in the country given the politically changed environment in Washington?

What is the role of information therapy (Ix) in each of these potentially disruptive forces?

Which of these developments will have the biggest impact on health care? Beyond that, will any of them actually change a system that has so many challenges and problems?

Many of these questions will be tackled at our upcoming Ix conference October 8-10 in Park City (see http://guest.cvent.com/EVENTS/Info/Agenda.aspx?e=f586de48-3d6e-4064-8543-1c7037b58890 for the full conference agenda). I hope you’ll join us.

–Josh

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