The social networking pioneer Dan Hoch (who co-founded the famous BrainTalk Communities site) posted a provocative commentary on e-patients.net today titled “Information Overload: Problem or Not?”

Hoch notes that the information overload across industries has given rise to the Information Overload Research Group, which is dedicated to “reducing information pollution.” I agree with Hoch that the Internet’s information democratization has been an important driving force behind what he terms the “e-patients movement.” No doubt that is a critically important contribution.

I would never suggest that consumers should be prevented from unfiltered information. But availability of all information on a topic does not equate with real access to meaningful, usable information for everybody. For some people, OD’ing on information may not be possible but many people would like to get guidance from other sources–that could be their personal physician, another health care professional, a community health worker, or another person who shares the condition.

As stated on this blog earlier in the week, Susannah Fox noted that Pew Internet Project data demonstrate that 80% of Internet health information seekers turned to a professional in a time of crisis, and that this figure is much higher than any other information that Pew studies.

Those of us who advocate for information therapy (Ix) never suggest that information should be available “by prescription only.” Information prescriptions are simply another tool, designed to help people navigate the vast information that exists in cyberspace and elsewhere.

(Continuing to follow up with commentaries on insights from the 7th Annual Ix Conference…and the slides are not only available now, but they also are right-side-up!)

The day before the Ix conference, the California HealthCare Foundation released the report (“Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools”) that Ted Eytan and I authored summarizing the Patient-Centered HIT Initiative (funded by CHCF, the United Hospital Fund, Kaiser Permanente, and the Group Health Community Foundation). At the conference, Rachel Block–formerly with UHF and now the Executive Director of the New York eHealth Collaborative–provided an excellent overview of the project with a particular emphasis on our experiences with safety-net populations.

Susannah Fox–Associate Director of the Pew Internet Project and also a member of the PCHIT Advisory Group–responded with a presentation highlighting the digital thermometers she has created with Pew data. They provide a great snapshot of consumer use of Internet/email, cell phones and broadband, broken down by a wide range of demographic characteristics. Susannah has explained that access to electronic technologies is not a matter of a “digital divide” because access is not an “on-off switch” but more of a “dimmer switch.”

A few of her comments beyond the thermometers are worthy of considerable thought as we figure out how to maximize the potential of Ix and patient-centered HIT.

• Susannah notes that 80% of Internet health information seekers turned to a professional in a time of crisis–far greater than any other industry that Pew studies.
• It’s clear that low access does not equate with low interest–a finding that matches exactly what the PCHIT Initiative found.
• To better understand the Internet’s potential for health care, it’s critically important that we talk to those people who are not online as well.
• The world is changing rapidly, so it’s important to (as Susannah paraphrased Diana Forsythe) “design for what could be.”

What do all these findings from Pew and the PCHIT Initiative report mean for next-generation patient-centered care?

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?

In response to Susannah Fox’s request/comment on this blog yesterday, I have summarized my opening presentation from last week’s 7th Annual Ix Conference. The slides will be available on our Web site this week. I welcome any comments. Here it is…

Although you may not all have gotten a good view of the front of the building, be sure to check it out at some point…What you would see on the left side of the Newseum is a 74-foot-high marble engraving of the First Amendment.

In part, it reads, “Congress shall make no law … abridging the freedom of speech, or of the press.”

We are here at the Newseum today—because like the founders of this great country—we believe in free access to information for everyone.

The goal of these opening remarks is to draw the connection between information therapy (Ix) and what the 1^st amendment represents. There are important implications of the unique nature of the American media for the evolution of US health care delivery.

The Internet ushered in a new era of information democratization. Suddenly, information available only to experts in a field became widely accessible to anyone with a way to access the World Wide Web.

Now, the challenge is how to harness that potential. By figuring out how to harness the power of free access to information, we can:

1. Translate information democratization into effective communication

2. Maximize potential of new media to make health care more efficient, more convenient, and more responsive to everybody’s needs

3. Improve decision making and health behaviors.

Many in the audience are familiar with Paul Starr’s Pulitzer Prize-winning book, The Social Transformation of American Medicine, written in 1984. In 2006, Starr created an equally well-researched book, The Creation of the Media: Political Origins of Modern Communications.

Although I’ve studied a fair amount of American history, this book brought into focus for me the unique nature of the First Amendment and the evolution of American media. I’m going to share with you a number of insights about free access to information in this country that Starr reports, and I’m also going to connect Starr’s insights to broader themes about what’s going on in the US health care industry.

Postal Service: Yes, the Pony Express were not only trailblazers of the Wild West. They were trailblazers in what other countries might have viewed as so democratic as to be nearly subversive. Indeed, America’s first information democratization was making sure that communication among the privileged and disadvantaged alike was facilitated by our delivery of personal communications.

Can you guess what technology and what decade these quotes refer to?

• “…inaugurated a new phase in the history of communications, the rise of modern technological networks…”
• “The new networks promised faster communications of people and places, of markets, armies and governments…”

• It could be the Internet…
• It could be the telephone…
• It was actually the electric telegraph in the 1840s

Although we despair at the challenges we face in overcoming barriers to connect health care actors electronically, all of the technologies that have been implemented have had to overcome interoperability problems. There was no standard for motion pictures a century ago, but we were able to overcome them because of the great value they ultimately provided.

Why did movies take off in the US and what does it tell us about the opportunities for health communications with underserved populations?

• Rise of motion pictures transpired during a massive wave of immigration to the US.
• Silent movies overcame barriers of English literacy.

Think about the US Constitution. It was only 5000 words, written mostly in plain English (the debate over the 2^nd Amendment notwithstanding), and accessible to all. It was a model of transparency, much the same as the US approach other aspects of government, such as public legislative sessions and concisely written and widely published state constitutions.

The US Census provides some important lessons too. Information democratization in the US was coupled with a mandated use of statistics

• Collection of data
• Publishing of statistical findings
• Use of that data to organize government

Like linking health information to the best available evidence, we might call our approach to the Census a little of EBG—Evidence-Based Government.

When we step back and look at all the innovations and revolutions in information and communication, it really is remarkable.

• Free speech as constitutional principle
• Constitution written so ordinary citizens could read it
• Government subsidized newspapers rather than taxing them
• Comprehensive postal network & assured postal privacy
• Periodic census with published data (& anonymity)
• Extension of public primary schooling

We also see in the way that European and American newspapers looked 1 or 2 centuries ago. When European newspapers were focused on literary essays, their American counterparts much more actively were reporting the news. Not only did Europeans do less information gathering, it was actually a novel concept when American journalists invented the interview—yes, let’s actually go ask people what they think. Europe had a much smaller and more homogeneous audience. In 1840, the US weekly newspaper circulation actually equaled that of all of Europe despite the fact that Europe’s populations was 14 times greater (233 million vs. 17 million).

So, what parallels can we draw between the creation of the American media and US health care?

First, think about how information democratization highlights that “knowledge is power.” Look at how that parallels the history of medicine. That fear of knowledge equaling power has caused ruling elites to keep knowledge secret and limit discussion. At a previous Ix conference, IxCenter Board Chair Paul Wallace summarized 1000 years of history of medical education. A millennium ago, the professor just stood up at the front of the room and lectured didactically at medical students. After five centuries, Gutenberg invented the printing press and suddenly the students had access to the medical textbook too. This was a revolutionary democratization and shift of power that medical students could actually find the answers themselves. Of course, it took another half a millennium for consumers to have access to the information.

Second, consumer empowerment. Starr writes, “Old ideas about who should know what no longer made sense,” and “Popular sovereignty implied a change in the cognitive relationship between the state and the people.”

The third parallel to health care was that 3: American newspapers were something of a “Press 2.0.” In the American Revolution, colonial newspapers were not only reporting protests and not only editorializing and championing the cause of the revolution. Colonial newspapers also provided a forum for discussion. In one sense, they turned disorder into a more coherent opposition movement. It was perhaps the first communication medium that demonstrated the power of social networks.

Finally, some are waiting for widespread adoption of technologies by the powers that be in health care. What we know from the history of American media: Everybody will eventually adopt a new medium if powerful. As Starr wrote, “…in the antagonistic expansion of a medium, even reluctant side has no choice but to adapt more powerful means of expression.”

So what does this mean for us today? The democratization of information is a great American opportunity for health care system redesign. …But there are also potential dangers. We need to figure out how to harness the power.

Harnessing the power of information democratization requires us to identify the challenges and finding an appropriate solution…

• “Availability” does not necessarily equate with “access.” We need to translate widespread availability of information into true, ubiquitous access.
• “Data” is not the same as “information,” which is different from “knowledge,” which is not equal to “behavior.” In order to go up the chain from data all the way to the behavior change we need for positive health outcomes, we need to connect accessible data with science—such as evidence-based medicine, decision sciences, predictive modeling, and behavior change science.
• For some people, the free access to information has led to a diagnosis of “information overdose” and a high signal-to-noise ratio. We need to think creatively about how we target, tailor and contextualize health information for consumers.

If we can figure out how to do these three things, we have a great opportunity to create real improvement in health care delivery…

1. Translate information democratization into effective communication.
2. Maximize the potential of new media to make health care more efficient, more convenient, and more responsive to everybody’s needs.
3. Improve decision making and health behaviors.

So when you leave the Newseum tonight, take a look up and ponder what the First Amendment means for American health care.

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.

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

Looking at how young people use the Web for virtually everything from commerce to social networking, it’s not hard to imagine an increasingly virtual future health care world. If Don Berwick is right that at least half of current in-person clinical encounters don’t require a visit, this generation likely will change the character of US health care delivery.

But what about the other end of the chronological spectrum? One of the common questions I get is how we make information therapy (Ix) relevant for seniors–the population that consumes the greatest amount of health care.

Although part of the answer is that Ix need not be delivered electronically, the more compelling notion from my perspective is that we have a magnificent and mostly untapped opportunity to extend patient-centered health information technology (HIT) applications to people who really need them.

The potential of the innovative applications that comprise patient-centered HIT (e.g., personal health records (PHRs), secure messaging, online tools, etc.) can be maximized if we successfully integrate them into patient-clinician relationships. Ideally, they should be viewed as tools within that context.

More than anybody else, seniors are likely to have ongoing and frequent relationships with their clinicians. In fact, in many cases, seniors concurrently interact with multiple providers, making the need for coordinated relationship management tools all the more important. Without them, we wind up with considerable redundancy, poor communication (not just between patient and doctor but among providers involved in that person’s care), and the possibility for dangerous medical errors.

Furthermore, other characteristics more common as people age (e.g., limited mobility, cognitive functioning issues) increase the importance of having patient-centered HIT applications. They can allow for communication without patient and clinician needing to be in the same place and for communication to be trianglulated–for example, to include the child or spouse of a senior with cognitive impairment.

Many seniors are already accessing considerable health care information online (to some, a surprising percentage), and there’s no doubt that the aging baby boomer population will vastly expand the online senior population in the near future. However, there’s no reason why we can’t do more to help more seniors capitalize on this golden opportunity now.

Community efforts involving librarians, hospital community outreach staff, senior centers, and others can effectively break down barriers limiting seniors’ adoption of e-health resources. Although I haven’t seen a lot of empirical data, anecdotal evidence suggests that, once obstacles are removed, seniors become active Internet users.

Who do you think the next generation of PHR users will be?

–Josh

(Visit www.ixcenter.org for more about PHRs and related issues.)

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