Since we launched the the Center for Information Therapy (IxCenter) eight years ago, we have focused on three core objectives:

1. Advancing the practice of information therapy (Ix).
2. Building the science around Ix.
3. Embedding Ix into everyday care delivery.

The rationale for this approach has always been straightforward. We needed to make enough progress on the first two objectives in order to both advance the field and make the third objective possible.

We have begun to witness substantial signs of progress. Indeed, we brought Ix practice and science to a level that facilitated our 2009 efforts to embed Ix into the meaningful use (MU) definition. The MU framework is associated with tens of billions of dollars in incentives to be paid out to providers under the HITECH provisions of the Recovery Act. In collaboration with others — particularly those organizations active in the Consumer Partnership for eHealth — the draft definition of the MU requirements include several core elements of Ix (i.e., patient-specific education resources, after-care summaries, prevention/follow-up reminders, self-management tools, etc.).

(As background, the health information technology (HIT) provisions (also known as HITECH) of the recovery act/stimulus bill (American Recovery & Reinvestment Act of 2009) established tens of billions of dollars of incentives for Medicare and Medicaid providers who not only adopt electronic health records (EHRs), but become “meaningful users” of them. This distinction was critically important because it is common wisdom that simply adopting HIT systems will have little impact if those tools are not deployed in such a way that they help clinicians and patients manage information effectively and communicate better.)

David Blumenthal, who directs the Office of the National Coordinator (ONC) for HIT, and other senior ONC staff have made a strong commitment to ensuring the patient-facing aspects of meaningful use remain a high priority as HITECH implementation progresses. Although the incentives will be administered by the Centers for Medicare & Medicaid Services (CMS), ONC will be responsible for supporting the extension centers and HIT research center that will support providers’ HIT adoption.

In a testament to the critical role that the IxAction Alliance and the IxCenter have played in advancing consumer-facing HIT applications, ONC has asked me to join their staff to ensure the successful translation of MU requirements into HIT implementation. This is a tremendous opportunity to fulfill the IxCenter’s mission of embedding Ix into everyday care delivery expectations, and therefore, an opportunity I had to embrace.

Implications for the IxCenter and the IxAction Alliance

In addressing my departure and the current challenging business environment, the IxCenter Board of Directors has considered multiple possible scenarios for sustaining the momentum of Ix progress. The Board decided that the best course is to close the IxCenter itself and to position the IxAction Alliance for continued growth and impact by integration of the Alliance into another not-for-profit organization. After careful consideration, the IxCenter Board has decided to transfer management of the Alliance and donate the IxCenter’s core intellectual property to the eHealth Initiative (eHI), a multi-stakeholder organization of more than 170 members. The IxCenter will cease operations on 11/30/09.

Through this transition, we believe strongly that the IxAction Alliance can continue to be an engine of progress, stimulating innovation and diffusing best practices. IxAction has evolved in the last few years into a community of shared learning — a cross between an innovation network and a learning collaborative.

We are also very pleased that the transition to eHI will create alignment with an excellent organization and a larger immediate constituency. eHI’s mission is to drive improvement in the quality, safety and efficiency of health care through information and information technology. Through its own strategic planning process, eHI has recently placed greater emphasis on consumer engagement and patient-centered care. IxAction will continue to drive forward with the same mission and have the opportunity to extend its reach, including a wider array of providers, state-based organizations, and other health care leaders.

“By combining the strengths of eHI and the Alliance, we will emerge as a stronger advocate for patient-centered care and HIT. Working together, we can make a significant and meaningful impact on health care. In the coming weeks, we will work closely with leaders and members of the Ix Action Alliance to ensure a smooth transition” said Jennifer Covich, Interim Chief Executive Officer.

The substantial intellectual assets that the IxCenter has amassed in the last eight years—most notably the several dozen IxInsights reports, IxResearch Briefings, and other IxAction resources—will transition with the Alliance to their new home. There, they will be maintained and nurtured, and eHI will build upon this work as it brings its wealth of knowledge and expertise to the task of managing the Alliance. IxAction’s output will continue to provide enormous value to organizations within the Alliance and externally—including helping to inform the work that ONC does in MU implementation.

There will be no interruption in support for the IxAction Alliance. Members will continue to benefit through the leadership provided by eHealth Initiative. The web portal, briefings, reports and IxAction events will continue to be available. Staff who are also transitioning from from the IxCenter will join in the future support for the efforts and  activities of the Ix Action Alliance.

Organizations who have questions or comments about the transition should contact Cindy Throop at cindy.throop@ehealthinitiative.org or Jennifer Covich at Jennifer.Covich@ehealthinitiative.org. We welcome all your suggestions and ideas.

Looking Back
The IxCenter and the IxAction Alliance have accomplished a great deal.

• We have stimulated innovation and diffused best practices on an ongoing basis among dozens of progressive organizations across the country.
• We have produced a rich set of resources in the form of dozens of white papers, webinars, IxInsights reports, research briefings, conference presentations, and many other documents.
• Through the efforts of the Alliance’s Ix Payer Workgroup, we have made great strides in building an infrastructure for widespread Ix adoption: Inclusion of Ix criteria in URAC disease management standards, NBCH eValue8 RFI, and Healthy People 2020 objectives.
• We have played an instrumental role in ensuring that Ix is a part of the draft definition of HIT meaningful use, and have an opportunity now for that work to continue as a federal government priority with tens of billions of dollars in provider incentives behind it.

The Center for Information Therapy has been working with the U.S. Department of Health & Human Services (HHS) for two years to develop a Healthy People 2020 Ix objective, as part of the HHS’s efforts to update and improve its health communication & HIT objectives for the next decade. We are pleased to report that the following objective has been released for public comment, the last stage of the process.

HC/HIT HP 2020–8: Increase the proportion of patients whose doctor recommends personalized health information resources to help them manage their health.

In addition, other Ix-related objectives are included in this section, including:

HC/HIT HP2020–6: Increase the proportion of persons who report that their health care providers always involved them in decisions about their health care as much as they wanted.

HC/HIT HP2020–7: Increase the proportion of persons who use electronic personal health management tools.

The public comment period is now open, and it is a great opportunity to voice your opinion about what should be the country’s public health objectives for the next decade.

When Obama Administration Chief Technology Officer Aneesh Chopra started his keynote at today’s Health 2.0 Conference in San Francisco, he began by mentioning the work that I did when the two of us were at the Advisory Board Company (that’s him there pointing to me), where I first began experimenting with the concept of information prescriptions. That came out of a two-year project (1999-2001) where we developed in-depth consumer health content. Just as (or maybe more) importantly, we shadowed patients and clinicians in hospitals and clinics and conducted dozens of structured interviews with people with diabetes (and their families).

The first panel that followed Chopra, I saw some cool tools demo-ed, but I didn’t get a sense of whether they truly support patient-centered care and meet consumers’ real health needs. After the panel on “Clinical Groupware and the Next Generation of Clinician-Patient Interaction Tools,” I asked the question:

“How did you collect information from consumers in advance of developing your applications? Did you do focus groups, structured interviews, or direct ethnographic observation to understand what tasks consumers really want to accomplish? And, at what point in the development process, did you do that critical research?”

Only one of the panelists chose to respond to the question (I think it was Arien Malec, VP, Product Management, Relay Health, but I’m not sure). His answer was somewhat vague (compared to my rather specific question), with the exception of discussing how they incorporate user feedback they receive after the deployment of tools. Although I agree that user feedback (a core part of the Health 2.0 model) is invaluable for refining tools, it is a fundamentally different part of the research & development arsenal.  And, more to the point, it was not an answer to my question.

So, when (following an excellent “The Patient Is In” session) I moderated the “Search & Content” session that featured six different Health 2.0 demos, I decided to keep asking the question until I got an answer that satisfies me. After all, the main reason that I could see for creating a panel with the diversity of demos covering all of search and content was because they basically address how we can help consumers get the right information at the right time to meet their decision-making and health management needs (basically colloquial for information therapy).  I figured that I might get a better answer if I re-framed the question:

“What did you do in advance of building your technology to ensure that what you were building met specific consumer needs?”

I admit it was a loaded question in that I have a strong bias. Before investing millions of dollars in product development, I believe that — if the goal is to develop consumer-centric tools — every company should begin with some combination of these patient-centered research approaches:

• Consumer surveys
• Focus groups with patients and families/caregivers
• Structured, extensive interviews with consumers
• Shadowing of patients and clinicians
• Direct, ethnographic observations of consumers in the settings where they “do” most of their health care (e.g., their homes, workplaces, schools, etc.)

If we want to meet Chopra’s call for robust innovation that transforms our economy and the health care delivery system, we first need to identify the health tasks that consumers want to accomplish. The best way to figure that out is to get answers directly from consumers before we write a single line of programming code.

At the request of Neil Calman, I had the opportunity to speak in Albany last week at the New York State AHEC (Area Health Education Center) System Advisory Board meeting on “Health Care Reform & the Health Information Technology Workforce.” The trip was well worthwhile for many reasons, certainly not the least of which being the chance to soak up more wisdom from Neil Calman, MD, CEO of IxAction Alliance member, the Institute for Family Health (IFH).

Neil — a member of the Health Information Technology (HIT) Policy Committee advising HHS on the implementation of HIT provisions in the American Recovery & Reinvestment Act — set up the discussion about the all-important definition of “meaningful use” of electronic health records (which will determine whether physicians are rewarded with incentives for HIT adoption). As others have stated, Neil made clear that “It’s not about the technology.” Rather, he said, “It’s about the handshake between HIT and health care reform.”

Neil then proceeded to give a great example from his own delivery system of the difference between HIT implementation and meaningful use of HIT. When IFH implemented its EHR in 2002, it experienced no improvement in the rate at which its older patients got a pneumonia vaccination. However, IFH added an electronic reminder system to its EHR in November 2003, which produced an immediate and sustained spike in vaccination rates that continues to hover around 80%.

Neil discussed other examples of meaningful use and highlighted that what it’s really about is changing the way clinicians practice. Although many clinicians bemoan the transition from handwritten, paper progress notes to electronic notes available for the patient to review, Neil emphasized that this modern form of documentation can produce important improvements in care delivery. This transparency (an important goal by itself) does much more than just create an environment of participatory medicine for its own sake.

Neil pointed out, “When you change what you write in progress notes,” to make them appropriate for your patients’ consumption, “you drill down further to the real reason” for sub-optimal care. In the past when a patient wasn’t taking a new medicine, an IFH clinician may have just written in the progress notes, “Patient non-compliant.” But such a statement obviously begs the question: Why? So the doctor now will ask, and the answer often provides important direction for improved care delivery: “Patient took first 2 pills and they made him sick.” Now, the clinician and patient know what they need to discuss in order to improve adherence to a medication regimen.

That’s what meaningful use is all about. Taking apart HIT, we’re not just changing the T (technology), but actually fundamentally changing the I (information) in order to improve H (health).

Jon Gabel from the National Opinion Research Center has an excellent op-ed piece in today’s New York Times. The basic argument is summarized in his conclusion:

“The Congressional Budget Office’s integrity is beyond questioning. But the record shows that it has substantially overestimated the cost of health care reform three times out of three. As Congress now works on its greatest push for reform in generations, the budget office needs to revise the methods it uses to make predictions about costs.”

Far from being an arcane methodological debate, CBO’s approach has profound consequences for health care reform and for the long-term health and economic conditions of the country. As Gabel puts it:

“The budget office’s cautious methods may have unintended consequences in the current health care reform effort. By underestimating the savings that can come from improved Medicare payment procedures and other cost-control initiatives, the budget office leads Congress to think that politically unpopular cost-cutting initiatives will have, at best, only modest effects. This, in turn, forces Congress to believe it can pay for reform only by raising taxes, which then makes reform legislation more difficult to pass.”

The reason that CBO has underestimated savings from past reforms of Medicare is that it makes the assumption that — without convincing empirical evidence of an initiative’s cost impact — it basically “scores” it as delivering zero savings. No doubt that CBO is consistent and conservative, but that doesn’t necessarily produce the most accurate budgetary forecast.

Perhaps more so than any other area in the federal budget, there are an enormous number of unknowns in health care. CBO has historically built its model on the premise that absence of evidence equates with evidence of absence.

But there is a major distinction. “Evidence of absence” means that we have an empirical reason to believe that there is no effect of an intervention (in this case on cost). In that case, it makes sense to score zero savings.

In contrast, “absence of evidence” simply means that we do not have sufficient evidence that an intervention produces any effect.  The problem is that, by definition, any true “innovation” (defined by Merriam-Webster as “the introduction of something new”) has no evidence. Which is to say: CBO has effectively ruled out scoring savings for true innovation.

Perhaps some would argue that’s an overstatement in that we certainly commonly use the term innovation to describe something that has been around long enough to be tested. Yes and no. There’s no doubt that new and innovation are relative terms, but there are still important reasons why that approach for CBO remains flawed.

First, evaluation takes time. To design a study, appropriately manage it, collect and analyze data, submit to peer review, and publish often takes many years.

Second, the level of evidence that CBO typically requires takes A LOT of time.

Third, innovation often comes from combining different initiatives and strategies that create a combined effect greater than the sum of their parts. Information therapy, patient decision aids, comparative effectiveness research, and other delivery system reforms may have a powerful impact when thoughtfully and appropriately combined together.

Fourth, the pace of innovation and the greatest innovative impacts can be dramatically robust. There is no way, in its current model, for CBO to capture those things that will have the most important effects on the federal health budget.

Like Jon Gabel, I don’t question the CBO’s integrity or analytical capacity, but I do believe that its methodological approach requires amendment. As I have written before, we — as health services researchers (and I admit to being one myself) — need to maintain our analytical rigor while being as creative in our research methods as the innovators are at innovating.

We should not shy away from the empirical idiosyncrasies that innovative care delivery initiatives create. Rather, we should rise to the challenge by employing a broader set of research and analytical skills to tackle these compelling research questions about new innovations. Indeed, the new care delivery strategies create opportunities for health services researchers to develop their own innovative research techniques.

I hope that health services researchers out there are up to that challenge.

If we aren’t, we will continue to create perverse public policy incentives.

When I reported on the IOM’s prioritization of topics for comparative effectiveness research (CER) three weeks ago, I highlighted the positive evolution in CER thinking represented by the listing. Whereas CER often has been about comparing the effectiveness an established drug to a newer, more expensive one, we need to do more than that. I wrote:

I’m all for trying to find out whether me-too drugs add any significant value. However, the greatest opportunities for implementing delivery system change that improves care effectiveness and efficiency relate to innovations in how care is organized and delivered, and how insights are communicated to the broad range of health care actors — most notably consumers.

There are some good CER articles in today’s New England Journal of Medicine. In “Comparative Effectiveness — Thinking beyond Medication A versus Medication B,” Kevin G. Volpp, M.D., Ph.D., and Anup Das, have made similar arguments.

In considering the allocation of federal resources for comparative-effectiveness research (CER), however, it is important that we maintain a broad view of ways of improving the health of the population. As many as 40% of premature deaths in the United States are attributable to Americans’ own health-related behaviors. If CER’s full potential for improving the population’s health is to be realized, such comparisons must go beyond those between medication A and medication B or device A and device B: we must also assess medications or devices in comparison with behavioral interventions, either alone or in conjunction with other approaches. In addition, since many diverse aspects of care delivery have a direct effect on patients’ health outcomes, we should assess policy-based interventions and their relative effectiveness in improving health.

In many cases, it seems clear that patients’ individual health-related behaviors are the proximate cause of disease and of the need for medical treatments. For example, obesity is a major risk factor for hypertension, diabetes, lower back pain, and other conditions. Patients who are able to lose weight may be able to reduce or eliminate their use of medications for these conditions. It therefore makes sense to compare, among patients with diabetes, medication-based approaches to the treatment of diabetes with, for example, the effects of behavioral approaches to weight reduction.

How we focus the CER agenda would be important enough just by virtue of the injection of dramatic increases in federal CER funding — $1.1 billion from the American Recovery & Reinvestment Act (ARRA). But the stakes have grown even greater this week given President Obama’s negotiations with leaders on Capitol Hill regarding how CER can play a critical role in long-term cost control and real reform of the delivery system.

If we maximize the potential of ARRA CER resources by investing in this second-generation approach to CER, we might actually have the combination of information and infrastructure that can bend the long-term cost curve while improving the delivery system.

In the couple of years since I’ve gotten to know him, I’ve often found myself leaving a room with Neil Calman — saying to myself, “Wow! That really captures the issue in front of us.” Or, sometimes it’s “If only we could clone Neil — or simply replicate his leadership — we could eliminate most of our country’s health care problems.” Neil is a primary care physician who is CEO and Co-Founder of IxAction Alliance member, the Institute for Family Health, a network of 17 federally qualified health centers in New York.

In Friday’s post on this blog, I mentioned the questions he posed for meaningful health information exchange that move the ball forward substantially. In the past, I’ve cited other wisdom from Neil, such as:

• HIT vendors’ responsibility to teach people how to use HIT products meaningfully
• The connection in HIT evolution between quality and equality
• His proclamation that training his own clinicians on effective HIT use was about helping them to become (in his words) “information therapists”
• (And from the same blog post) HIT implementation with his safety-net population was approached with the goal of building trust with their patients

At last week’s HIT Policy Committee meeting, Neil made another comment that triggered a light bulb flickering on over my head. As concerns over the implications of HIT meaningful use definitions on provider liability swirled, Neil raised a fascinating point. We are getting close to an understanding around a new “standard of care in the community” related to the meaningful use of electronic health records (EHRs). Neil suggested that soon “if an error in care that could have been prevented” by a meaningfully used EHR, there is in effect a new standard of care to which all providers will be held accountable.

The literature has demonstrated that little relationship exists between actual malpractice and legal action. This is true in both directions. Many horrible and preventable medical errors never are punished while many lawsuits are settled where negligence may not be the issue.

What the literature tells us is that most medical malpractice lawsuits arise because of poor advance communication resulting in a mismatch between patient and clinician expectations. Effective information therapy (Ix) that leads to informed choice in advance of medical and surgical procedures can dramatically reduce the likelihood of malpractice suits being filed.

More importantly, by meaningfully using HIT to deliver Ix, clinicians can dramatically reduce the likelihood of committing medical errors or having consumers unprepared for the clinical realities that confront them. And that’s a standard of care for our community.

During yesterday’s meeting of the Health Information Technology (HIT) Policy Committee, there was a critical missing component of an otherwise excellent presentation by Deven McGraw and Micky Tripathi, C0-Chairs of the Health Information Exchange (HIE) Workgroup. Committee members Adam Clark (from the Lance Armstrong Foundation) and Neil Calman (from IxAction Alliance member the Institute for Family Health) brought up the critically important question: Where is the patient in all these diagrams about the exchange of health information?

After Clark first pointed out the oversight, Calman framed a few relevant important questions:

• Where’s the place on the diagrams (explaining the transmission and exchange of data among systems) that patients plug into?
• How do you create a meaningful view into the data that are being passed around?
• What should those views contain?

McGraw and Tripathi had an enormous task in trying to lay the groundwork for a discussion about the relationship between HIE and meaningful use of HIT. But without attention to consumer needs for health information up front, even successful technical transmission of data from one entity to another may not lead to effective exchange of information that is meaningful to the end-users (most notably clinicians and patients).

Charles Kennedy (from WellPoint) built further on this issue: If we just connect data from System A to System B, it will produce data that is basically just transactional in nature, which doesn’t provide useful decision support to clinicians and patients. In order to create meaningful information for end-users, we need some sort of data infrastructure.

Kennedy, Clark and Calman have circled in on one of the most pressing issues in HIE. A few years back, I wrote an Issue Brief for the California HealthCare Foundation called, “Lost in Translation: Consumer Health Information in an Interoperable World.” The idea is basically to think about what HIE infrastructure looks like when you start from the user-centered design perspective. That is, we should begin by asking questions about what meaningful information do clinicians and patients need to manage care better and more efficiently, and then come up with the technical infrastructure that supports exchange of that information.

If we don’t approach HIE that way, we’ll end up with enormous investment of resources to produce data that doesn’t facilitate substantially better or more efficient care.

David Blumenthal, who heads the Office of the National Coordinator (ONC) for Health Information Technology (HIT), spoke at a Center for American Progress briefing this morning on, “Aligning Health IT and Health Reform: Achieving an Information-Driven Health Care System.”

Blumenthal reiterated that the HIT provisions (HITECH) of the American Recovery & Reinvestment Act (ARRA) were not about the narrow objective of HIT adoption, but much more so about the bigger goals of “health reform, health improvement, effiiciency improvement, getting more value…” He added, importantly, that this wasn’t just about their interactions with providers, “but also to help people stay away from the health care system and live healthier lives.”

Blumenthal commented that the ambitious HITECH timetable creates enormous time pressure on ONC, but it also “gives us a discipline; it focuses us on the most important things… What is meaningful use and how do we get to it?”

ONC’s first draft definition made important strides (though there is still room for improvement), particularly in terms of strategies for better engaging consumers and families. The HIT Policy Committee advising ONC will issue its next iteration of the meaningful use definition at its meeting tomorrow.

David Leonhardt had a great piece in last Wednesday’s New York Times titled, “In Health Reform, a Cancer Offers an Acid Test.” Leonhardt makes the argument that the most fundamental issue for health care reform is whether it addresses “the combination of soaring costs and mediocre results” and the litmus test for that question can be found in how the country addresses prostate cancer treatment.

Leonhardt has identified a great example of where we spend vastly different amounts of money on treatments that produce, on average, similar outcomes. There also is tremendous variation in rates of prostate cancer procedures that has been dictated much more by physician practice patterns than by patient values and preferences.

I accept Leonhardt’s litmus test, but I would offer a few friendly amendments in evaluating how health care reform might pass the test.

We want to be sure not to confuse “on average” similar outcomes with the right decision for all patients. Clinical outcomes will vary based on many factors. One reason why Leonhardt is right that prostate cancer is a good focus is because it typically progresses slowly, which makes the “watchful waiting” strategy effective in many cases. In some cases, that watchful waiting will transition to more aggressive treatment based on a range of factors. Improvements in genomics may also allow clinicians and patients to evaluate treatment options with more precise data about the consequences of pursuing different options.

It’s also critically important that clinical outcomes not be the only factor in dictating treatment choices. Sometimes even the best comparative effectiveness research (CER) won’t tell us which treatment is best for everyone. Rather, through shared decision making (SDM), we need to provide consumers with the information that allows them to make informed decisions (in consultation with their families and clinicians) that takes into account their own values and preferences. Prostate conditions are good examples because there are trade-offs (are you more concerned about absolute prevention of mortality, symptom relief, or potential negative side effects?), for which there is no “right” answer.

I know that Leonhardt probably faced space constraints, but another reason why prostate cancer is such a good litmus test is that the testing itself is controversial. PSA testing may not be appropriate for everyone (clinicians and patients should discuss whether to get a PSA (prostate-specific antigen) done before a doctor orders the test). The big expense may be more in all the downstream testing (biopsies, etc.) and unnecessary treatment and worrying it causes rather than the PSA testing itself.

Then the question is: How do you actually change care delivery patterns? We need to develop good decision aid tools and figure out how to get clinicians and patients to use them. No doubt some of that is a matter of financial incentives.  But perhaps just as importantly, we need to create compelling strategies for integrating decision aids into the clinical workflow to make it easier for clinicians to prescribe these tools. Then we need to deploy effective strategies for getting tools used by consumers (see the new research by the Center for Advancing Health).

Some skeptics will say that there’s no way we can make significant progress on these critical delivery system issues while the politics over public plans and paying for expanded coverage are threatening the viability of passing anything. On the other hand, common-sense, money-saving solutions might actually be one way out.

One possibility for how comprehensive health care care reform can pass Leonhardt’s litmus test is if the legislation includes the key components from S. 1133, introduced by Senators Wyden and Gregg. The Empowering Medicare Patient Choices Act would expand the use of shared decision making (SDM) in Medicare to help beneficiaries — in collaboration with their clinicians — make more informed treatment decisions based on an understanding of available options and each individual patient’s circumstances, beliefs and preferences. The consulting firm Lewin has estimated significant financial savings, and it’s clear it will result in better, more patient-centered care as well.