The Center for American Progress (CAP) released a new “Blueprint for Reform” that focuses on how to fix the delivery system. This well-constructed document and provocative forum was spearheaded by CAP CEO John Podesta (former Clinton White House Chief of Staff) and Jeanne Lambrew.

There are a few things that really show good progress in the national debate. First, the fact that CAP has chosen this critical time at the precipice of the national health care reform debate to focus attention on reforming care as well as coverage will be helpful to facilitating that discussion in 2009 policy debates (they, of course, support coverage initiatives as well but those aren’t addressed in this document).

Second, the quality and thougtfulness of the work and recommendations is high. Not surprising given the exceptional collection of authors with each chapter co-authored by a physician and a policy expert. These include: Don Berwick, Tom Lee, Judy Hibbard, David Blumenthal, Bob Berenson, Paul Ginsberg, Steve Schroeder, Dora Hughes, Chiquita Brooks-LaSure, Karen Davenport, and Katherine Hayes.

Finally, it was encouraging that CAP identified patient activation/second-generation consumer engagement as one of the six domains (chapters) that must be addressed in a reformed delivery system. The authors define second-generation consumerism as “engaging and activating patients to better manage their health,” which represents an important step beyond just throwing information at them and making them financially accountable for their health care spending–which, as the authors point out, research has shown doesn’t really accomplish the things we want.

What I would like to see CAP do more of in the future is better integrate that patient activation component into the infrastructure section (not surprisingly, much of what the IxCenter works on). To be specific, many of the opportunities for engaging and activating patients need to be better embedded into the health care delivery system infrastructure. That means not just giving consumers access to personal health data via electronic tools, but actually creating them in such a way that they allow consumers to engage and enhance activation.

Hopefully, that detail can be built into future CAP work and next year’s health care reform debate.

It’s fascinating when two of my passions collide in the opinion pages of the New York Times like they did over the last week. On Friday, October 24, some seriously strange bedfellows came together to write about, “How to Take American Health Care from Worst to First.” Strange enough that Newt Gingrich and John Kerry joined together, but the lead author was Billy Beane, often thought to be the pioneer in the trend toward data-driven major league baseball general managers.

I’ve been studying the health care system for nearly two decades, but I’ve been studying sabermetrics (complex baseball statistics) since a decade before that. So you’d think that their argument would resonate with me and, to some extent, it does.

Their thesis is rational in many ways. Much of what is done in health care has no evidence basis, and we end up spending a lot of money on things that are unnecessary or even detrimental (or, at the least, things for which we just don’t know). By developing a better evidence base and encouraging more use of it, we could improve quality and lower cost.

What’s lost in their argument is that health care is not a spectator sport. Now being an intense fan (or, to be honest) a rabid citizen of Red Sox Nation, I have at times believed that the way I sit, the clothes I wear, or whether the sound is muted has an impact on the quality of play delivered by my beloved baseball team. But in my more considered moments of reflection I recognize that I’m neither responsible for the Sox triumphs in 2004 and 2007 or their failures (which I will not painfully reflect upon here).

But in health care the “players” who are unpaid have a bigger impact on the outcome of the game (in this case, their health) than those who get paid the big bucks. You can call them patients, consumers, citizens, or people, but you can’t call them spectators, because their choices, actions, and behaviors dramatically affect their health and the costs associated with their illness and care.

In fact, the only thing that may have a bigger impact on an individual’s health than his or her actions is the collective impact of the community or society. I’m not talking here about rally caps and deafening cheers but our environment, the food economy, advertising, transportation options, etc.

Although I thought today’s NYT Letters to the Editor on the subject were interesting, I was disappointed that none of them focused on this angle (although one did address societal ills). Instead, they addressed the moral vs. business distinction, the greater complexity of health care, universal health care, and medical education reform.

Billy Beane is absolutely right about sabermetrics, and I fully agree with Gingrich and Kerry that substantially more needs to be invested in comparative effectiveness research and provider reimbursement reform is critically important. But that’s only going to move us forward a little ways. If we want to dramatically improve US health care, we need to focus much more attention on advancing participatory medicine and all of the components involved in it.

Last week in San Francisco, we announced that the next IxCenter conference will be a joint venture with Health 2.0, LLC. After two years of interesting and lively dialog, we realized it is the perfect time to further investigate the intersection of the Ix and Health 2.0 movements. Matthew Holt, Indu Subaiya, and all of our colleagues are all looking forward to pulling together one great conference to explore the synergies of these two transformational movements in health care.

Visions for reinventing health care around these two patient-centered approaches to care delivery will address participatory medicine and the public policy needed to support it. The theme: “The Great Debates on the Next Generation of U.S. Healthcare.” Some of these great debates—moderated in part by Susan Dentzer (Editor-in-Chief, Health Affairs, and former head of health team for PBS’s NewsHour)—will include:

• Health 2.0 & Ix vs. traditional health care
• Knowledge creation: Expert vs. Wiki
• Navigating the health care system: Human info-mediaries vs. automation & algorithms (or some combination?)
• How do you build Health 2.0 into the delivery system?
• What is the future role of the doctor?

The conference will be held on April 22 and 23, 2009 at the Boston Park Plaza Hotel.  You can register at this week’s special early-bird rates for Health 2.0 attendees and IxAction members to get an extra $200 off the early-bird rate, but you need to sign up by midnight on Halloween (October 31)…BOO!

The last two days at the Health 2.0 conference in San Francisco were inspiring and provocative, but the challenges that remain range from daunting to frustrating. Matthew Holt and Indu Subaiya put together a magnificent program. The question is where do we go from here?

Thankfully, Matthew & Indu structured the last “Looking Ahead” panel with Brian Klepper moderating a panel consisting of four of the most thoughtful people in the country in terms of the role of HIT in the lives of real people. Here’s a brief synopsis of some of what they said (I’m sure I’m not doing them justice but maybe they can comment to fill in some additional detail)…

• Alan Greene, MD, CMO, ADAM; Founder, DrGreene.com (and at least a few more hats as well): He paraphrased Thomas Jefferson as saying that a “well-informed community can be trusted to govern itself.” Alan noted that the country’s founders apparently didn’t apply that to African-Americans and women (and, he didn’t mention it, but non-landowners as well), and that it still didn’t apply to “patients” in this country. Alan also highlighted that trust, simplicity and satisfaction are not only critically important but that they are two-way streets. Alan is helping to launch a new Journal of Participatory Medicine in January that I’m sure will make a valuable contribution to the health care delivery system.
• David Lansky, PhD, President of the Pacific Business Group on Health: He expressed concern that even the more progressive purchasers are not engaged in Health 2.0. He offered free registration to this conference to 80 of his business coalition members (large employers) and none took him up on the offer. What does it mean that purchasers were almost nowhere to be seen at this conference? Is legilsative action going to be necessary to drive Health 2.0 change?
• Rob Kolodner, MD, HHS’s National Coordinator for HIT: He pointed out that there are ripple effects in the economy when you create more effective and efficient ways to get things done. He offered the example of stage coaches–all the people in that sector went out of business with Ford’s democratization of the automobile but argued that it was still the right thing to do.
  • (My own aside given the example he chose: I’m not suggesting Kolodner is wrong, but it would also be worthwhile noting the long-term unintended consequences that technological progress sometimes produces–this example having such a dramatic one in our ultimate dependence on foreign oil and global environmental destruction.)
• David Kibbe, MD, formerly from the American Academy of Family Physicians but perhaps best known for his work on the continuity of care record standard: He warned that we have not yet changed the game. He also expressed concern that some of the HIT and Health 2.0 companies are not fundamentally changing things but rather (in some cases) just automating the same inefficiencies that exist in health care today. He urged everyone in the audience to talk to their own personal doctors about what they want (e.g., electronic access to personal health data, information therapy, etc.).

The session concluded with a lot of discussion about the need to bring more policymakers and practitioners into this discussion. It sounds like a great time to bring the IxCenter more directly into the Health 2.0 conversation…

…Which is exactly what’s going to happen!

I’m looking forward to attending the apparently sold-out Health 2.0 conference next week in San Francisco. I’ll be moderating a session on Content, Navigation and Advocacy (see day 1 of agenda here) with a great collection of panelists and demo presenters.

As my increasing blogging about Health 2.0 suggests, the IxCenter is increasingly interested in the intersection of the Ix and Health 2.0 movements, and all those in attendance next week will be the first to learn about a really exciting development along these lines.

Many of the questions ruminating through my head as I think about what will be discussed next week include:

• How can the evolving delivery system retain the best of Health 0.0 and 1.0 (e.g., trust and personal relationships) on the route to Health 2.0 (with much greater user-focused functionality)?
• To what extent are Ix and Health 2.0 synergistic vs. dichotomous? More importantly, what are the keys to maximizing those synergies?
• How do you actually build Health 2.0 into existing care delivery systems?
• What are the pros and cons of the “expert” vs. “wiki”approaches to knowledge creation in health care?
• What’s the future role of the doctor? Is it true to its Latin roots (literally, “to teach”)? Is the physician role a navigator, a contextualizer, a consultant, or something else?
• To what extent will human vs. automated infomediaries guide consumer decision making and navigation in the future?

Tune back here next week and also to the IxCenter home page for new and exciting Ix-Health 2.0 news!

After I blogged last week about the Ix role in Health 2.0, it was cross-posted on The Health Care Blog. The post there generated a number of comments representing multiple perspectives.

As is perhaps too common in blogging, I may have gone too quickly and not been clear enough about some of the premises of Ix, particularly with respect to the great importance I place on consumer empowerment and engagement. I also did not provide examples to give a better perspective on what I was describing.

Here’s some additional effort to clarify, and I’ll come back to this more soon.

First, information therapy (Ix) does not at all mean that information should be available “by prescription only.” When we talk about Ix, we have always discussed three “prescribers” of information:

1. Clinician-prescribed.
2. System-triggered (based on data sources that serve as “information triggers” like a new lab value, medication, diagnosis, etc. that suggests a new need for a particular piece of information).
3. Consumer-prescribed. Even within that last category, there are multiple possibilities: Self-prescribed; prescribing to a friend/family member; and prescribed by someone in a peer group (this could be from an online social network, from fellow “patients” in a group visit, or from many other sources).

Second, there are many ways for people to find and ingest health information. But it also depends a lot on the individual. Susannah Fox from the Pew Internet Project has told me that health care is much different from other industries Pew has studied in that consumers are much more likely to seek out a professional in a time of crisis. In fact, according to Pew data, 80% of Internet health information seekers (and I presume a greater percentage of the general public) seek guidance from a clinician. Several other consumer surveys have reported similar findings.

I’m not at all saying that most consumers will stop there. My own e-patient experience last week with my 4-year-old’s new diagnosis of asthma is a good example. I wanted the pediatric allergist to answer a slew of questions. As I recounted the two-hour appointment to my wife, I remembered some of his answers with more fuzziness than others (much to my wife’s chagrin). Some tailored Ix (including an after-visit summary to detail next steps) could go a long way toward helping me and my family on the right path.

No doubt with our information-seeking tendencies, we would supplement that with many other health information searches. But my efforts thus far with both searches and posts to pediatric social networking sites have not yielded information specific enough to answer my particular questions.

The reason why I want the “information prescription” (in this case from my doctor, though as I said before, it could come from other trusted sources as well) is that I want my doctor to treat his dissemination of information to me as carefully as his selection of medication prescriptions for my son.

Everyday Health and Revolution Health have announced their merger, creating a consumer health Web site designed to challenge WebMD. The new company will operate under the name Waterfront Media.

There’s no doubt that they will get a lot of consumer traffic to their network of sites. One of the things that remains unclear for both Waterfront and WebMD is to what extent they will serve primarily as reference sources versus playing a greater role in consumers’ own health management. The answer may very well lie in the degree to which they provide information therapy (Ix), not just health information.

As 1.0 as it is, there’s certainly no shame in being a valuable reference tool. I’m a big fan of information democratization. But it’s impact on care management has limitations.

From the Ix perspective, accurate and comprehensive health information is only one third of the equation: the right information to the right person at the right time. Proactively delivering (or prescribing) that information “just in time” or at the particular moment in care that someone needs it to make an informed decision or support a healthy behavior requires another level of functionality. Similarly, tailoring that information to the particular needs of a diverse population in a way that is actually understandable, meaningful, engaging and actionable requires considerably more sophistication than the science and technology that supported a 1.0 world.

Just as I’ve said many times before that technology is only a tool, good information is only one (necessary but not sufficient) ingredient in Ix. Figuring out how to get timely, tailored information not only consumed but also internalized by lay people is critically important to effective and efficient health care. This is what Ix is all about.

That’s why the intersection of Ix and Health 2.0 is so important for the future of health care — for effective self-management, for participatory medicine, for real patient-centered medical homes, and for a more effective care delivery system that truly supports consumers’ needs. The IxCenter will be focusing increasingly on this intersection in the coming months, and there is a lot more exciting news on that front coming to you in the very near future.

Yesterday’s New York Times published a series of articles of health information searching on the Web. Among the many interesting quotes, one that resonated with me was in this article from Dr. Michael Fisch, interim chairman of general oncology for the University of Texas M. D. Anderson Cancer Center.

Dr. Fisch expressed concern about information overload. He commented, “Just like with medicine, you have to ask yourself what dose you can take. For some people, more information makes them wackier, while others get more relaxed and feel more empowered.”

I would never use the term “wackier,” but there no doubt are some consumers who suffer from what I call “information overdose” while others fully embrace the democratization of information.

Other corollaries between medication prescribing (Rx)  and information prescribing (Ix) exist as well. Despite the tremendous value that good medications or good information can provide for patients in need, wrong or inaccurate information can produce negative “side effects.”

In fact, one of the goals of Ix or information therapy is to proactively deliver the appropriate dose, frequency, and duration of the information that an individual needs at just the right time to make a better decision or lead a healthier life. If deployed correctly, new technologies can facilitate information prescribing targeted to paritcular moments in care and tailored to people’s individual needs.

We always want to maintain the availability of “over-the-counter” Ix. In no way, should information be available “by prescription only.” But availability of information does not necessarily translate into access to usable, meaningful, understandable information.