I was asked to write an article for the June issue of the Journal of AHIMA (American Health Information Management Association). It also has an article on information therapy (Ix), but perhaps surprisingly to readers of this blog, that’s not the one written by me.

From the Journal of AHIMA Web site post from yesterday:

“The June cover article examines the field of information therapy: getting patients the information they need to better manage their health. The other features report on whether stimulus funds will pay off in health information consumers can use and the lean thinking philosophy for those organizations looking to more effectively manage their resources and staff in this tight economy.”

The cover features a clinician handing forward toward the camera a prescription with “Ix” at the top left corner, and the words, “Patient-centered Information.” The cover story by Jill Burrington-Brown, MS, RHIA, FAHIMA, provides a nice overview of Ix and the role of HIM professionals in facilitating Ix delivery. The second feature listed is “The Big Gamble,” the piece I wrote on how to ensure that the vast infusion of taxpayer dollars into HIT results in useful, meaningful information for consumers.

I’ve done my best to consolidate all of the media coverage I can find of the first-ever “Health 2.0 Meets Information Therapy (Ix)” Conference. I still see things trickling in — and, if you know of coverage I’ve missed, please let me know in the comments section — so I will update this page as I learn more.

• Reactions from conference organizers:
  • Joshua Seidman: Ix-Health 2.0 Conference Reflections and Ix-Health 2.0 Conference Day 1 highlights
  • Matthew Holt: Health 2.0 Met Ix…
• Twitter summaries:
  • Collection of all 3,400 tweets posted (mostly) during the conference
  • Tweet stream analysis done by Chris Hogg
• Media outlets:
  • ICYOU video interviews of speakers and participants
  • MobiHealthNews photo essay
  • Healthcare IT News by Jack Beaudoin
  • Patient Safety & Quality Healthcare by Susan Carr
  • [UPDATED] The Doctor’s Channel video summary
  • [UPDATED] HCP Live audio interviews
• Blog posts:
  • Health 2.0 meets Ix: The Rise of the Patient Voices by Gilles Frydman on e-Patients.net, and a follow-up post on Health 2.0/Ix Conference: What About Minority Representation?
  • From Health 2.0 Meets Ix: A Breathtaking Display of Possibilities by Brian Klepper
  • “We Will All Be Patients Someday” — Health 2.0 Meets Information Therapy by Ted Eytan
  • Mobile could be a game-changer - but only for those who get in the game by Susannah Fox on e-Patients.net
  • Thoughts from Health 2.0 Meets Ix Conference by Blake Zenger
  • The Public’s Belief in Scientific Uncertainty and the Importance of the Social Health Internet by Jane Sarasohn-Kahn
  • The Doctor’s Role in a Health 2.0 World by Lygeia Ricciardi/Project Health Design
  • Health 2.0 Hype or Reality? by Bart de Witte
  • Health 2.0 Meets Ix: No More Patient Patients by Kevin Kruse
  • Too Many Content Plays = Unsustainable by John Moore
  • Health 2.0: A Lot of Hot Air in this Balloon by John Moore
  • [Updated] Observations from a distance - Health 2.0 Conference Part 1 by Lodewijk Bos/ICMCC
  • [Updated] Observations from a distance - Health 2.0 Conference Part 2 by Lodewijk Bos/ICMCC
• Other:
  • Slideshow and links to few conference-related articles from MDNG

Over at the e-patients blog, John Grohol has some criticisms of information therapy (Ix) and Health 2.0, particularly with respect to the joint post that I did with Matthew Holt and Indu Subaiya last week on this blog, The Health Care Blog, and the Health Affairs Blog. Grohol seems concerned that broadening the definition of Ix and Health 2.0 render them less meaningful.

It’s a fair criticism in many ways. In fact, that is why the Center for Information Therapy (IxCenter) and its IxAction Alliance have invested so much energy in developing formal definitions, which have been adopted by URAC for their disease management standards and integrated into the National Business Coalition on Health eValue8 purchaser RFI for health plans.

Moreover, that definition forms the core of the new proposed information prescription objective that has been proposed for HHS’s Healthy People 2020 objectives, which I discussed last week and on which you can voice your own opinions.

That said, there are reasons to be broader in some circumstances as well. Earlier semantic criticisms of Ix included a concern that the IxCenter was suggesting that information should be available “by prescription only.” We needed to make clear that nothing could be further from our goals and that we fully supported “over the counter” availability of information. (It’s worth noting that even though this was the general consensus of the IxCenter Board of Directors, its founding Chairman Don Kemper probably agrees more with the stricter definition than the revised one.)

However, information therapy has always included the three types of information prescriptions — clinician-prescribed, system-triggered, and consumer-prescribed — as was made clear in the Ix book published in 2002. The question is what constitutes consumer-prescribed Ix. Most certainly, it has always allowed for a prescription by a lay person who knows you best (e.g., spouse, friend) and someone in your peer group (e.g., a person with more experience with the same condition). The “self-prescribed” is where we have more controversy.

But the most important thing that separates Ix from “plain old” information is that it is targeted to a moment in care and tailored to someone’s individual needs. The question is: What is the best way to find that? The answer, I believe, depends greatly on the individual in need of the Ix. And that is why we try to be inclusive in our definition.

By Matthew Holt,  Joshua Seidman, & Indu Subaiya

On April 22–23 in Boston, two ideas are going to come together. Health 2.0 has been defined in different ways, but is most often considered to be the use of lightweight online technologies which allow consumers to access and exchange health information via the now familiar search, communities and tools. Information therapy (Ix or information prescriptions) involves the proactive delivery of the right information to the right person at the right time, usually as part of the care delivery process.

However, while both Health 2.0 and Ix are focused on improving patients’ participation in care, they tend to come from different backgrounds. Ix tends to be “prescribed” to the patient, often by a clinician (although system-triggered Ix and  consumer-prescribed — either “self-prescribed” or recommended by a peer, caregiver, etc. is also part of the definition). Ix innovations have had the greatest penetration in organized systems of care with robust provider and patient HIT applications like Kaiser Permanente and Group Health Cooperative in Seattle.

Health 2.0 had its start with non-health care organizations delivering content, communities and tools to consumers online—often in the absence of the health care system paying much attention. Thousands of communities about every conceivable health condition exist online, hundreds of sophisticated tools have been developed for consumers and clinicians to use, and now the ability to create and store patient data online is becoming much more prevalent. But in general it’s been savvy consumers, followed by technology and media companies who have been leading the charge.

In addition, Ix has been focused on delivering the “right” information, often implying “evidence-based,” although “right” can have other definitions as well. In Health 2.0 communities, there’s often wild disagreement about what the evidence base actually shows, and what the correct course of action is. Last Tuesday’s post in Well (The NY Times patient blog) about the complexity of understanding the correct course of action in PSA testing for prostate cancer is a typical example.

So can these two movements live together? Better yet, are there synergies that can help them to thrive? Is this a case of the proverbial combination being greater than the sum of their parts?

We are going to find out in Boston on April 22–23 at the Health 2.0 Meets Ix conference, hosted by the Center for Information Therapy and Health 2.0, LLC . We are also going to find out whether the current health care system is ready to adopt Health 2.0, Ix, or some combination. The format will be a series of Great Debates.

Health Affairs is our media partner in this event, and Susan Dentzer will play a large role in helping to moderate these debates. But as a teaser, several of the debaters will reveal some of their cards in this blog, the Health Affairs blog, The Health Care Blog, and several other blogs in the coming weeks. We think you’ll enjoy the debate!

In today’s Wall Street Journal, Laura Landro devotes her biweekly “The Informed Patient” column to profiling information therapy (Ix) initiatives. Landro describes the Center for Information Therapy (IxCenter) and Ix programs developed by IxAction Alliance members Kaiser Permanente, Group Health Cooperative, and Healthwise.

Landro highlights how the consumer-dissociated health information technology debate inside the Beltway has not focused on how HIT will actually benefit consumers, and how Ix initiatives provide real-world solutions for engaging consumers. Landro’s column begins, “If all the talk in Washington about using electronic medical records to cut health-care costs makes your eyes glaze over, it might help to consider the experience of Holly Jacobson.”

Jacobson is one of the 2.8 million Kaiser members taking advantage of the real-world Ix solutions that truly engage consumers in managing their own care and improving their lives. Landro quotes Jacobson, who says that Ix initiatives have led to “a significant shift in my ability to become more of an advocate for my own health care.”

Landro quotes Paul Wallace, Chair of the IxCenter Board of Directors, “Information therapy can help bridge the transition from doctors doing things to and for people, to helping them become active participants in their own care.”

The American College of Cardiology’s Cardiosource Video Network has posted a new four-minute video segment on “Next-Generation Patient Care.” The segment provides an excellent summary of the issues addressed at last week’s 7th Annual Ix Conference.

Today’s iHealthBeat “Features” story offers an external outsider’s perspective on last week’s 7th Annual Information Therapy (Ix) Conference. George Lauer, iHealthBeat Features Editor, reviews several of the conference’s speakers, summarizes new reports released, and discusses the relevance of ideas presented to other health care industry developments.

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.

Over the next several days, I’ll share insights generated from our 7th Annual Information Therapy (Ix) Conference, “WIxRED: Next-Generation Patient-Centered Care.” You can also check back on our site later in the week to see all the PowerPoint presentations. In the interim, you might want to check out what others are saying about it.

Susannah Fox from the Pew Internet & American Life Project put together a nice summary of her favorite moments at e-patients.net. Matthew Holt and Jen McCabe Gorman had a number of reports on June 12 and 13 at The Health Care Blog.

At the conference on June 12, Rachel Block, Executive Director of the New York eHealth Collaborative, provided an overview of findings from the Patient-Centered HIT Initiative. The day before, the California HealthCare Foundation, released their report on PCHIT that I authored with Ted Eytan titled, “Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools.”

There’s more to our decision to hold the 7th Annual Ix Conference (”WIxRED: Next-Generation Patient-Centered Care”) at the Newseum than its striking architecture, fabulous exhibits, and the media buzz (for example, in the New York Times and Washington Post) surrounding its recent opening.

The Newseum, an interactive museum of news celebrating the First Amendment, is dedicated to free access to information–a central theme to the information therapy (Ix) movement.

The unique nature of America’s commitment to the democratization of information became clear to me from reading Paul Starr’s excellent book, The Creation of the Media: Political Origins of Modern Communications. Starr’s thorough history of the evolution of the media in the United States and Europe demonstrates that it is no accident that the revolutionary idea of a constitutional right to a free press emanated in the U.S.

When I open the Ix conference next month, I’ll briefly describe some of the insights gained from Starr’s research, not only to connect Ix to the venue of our event. There are important implications of these findings for how we reform U.S. health care delivery. There also are several relevant parallels between the evolution of the American media and the trajectory of our future health care system.

The democratization of information offers the U.S. health care system a great American opportunity, but there are also potential perils if we do not maximize its potential. I hope you’ll join me and many innovative health care leaders for a rich agenda that will explore how we chart a reformed health care delivery system.