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.

The U.S. Agency for Healthcare Research & Quality (AHRQ) has just released a thorough literature review of the “Impact of Consumer Health Informatics Applications.” The report, prepared by the Johns Hopkins Evidence-based Practice Center and led by Chris Gibbons, is part of AHRQ’s evidence report/technology assessment series.

Gibbons et al concluded that “available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.”

The abstract is below and can be accessed here and has a link to the full 500+-page report.

Objective: The objective of the report is to review the evidence on the impact of consumer health informatics (CHI) applications on health outcomes, to identify the knowledge gaps and to make recommendations for future research.

Data Sources: We searched MEDLINE®, EMBASE®, The Cochrane Library, Scopus™, and CINAHL® databases, references in eligible articles and the table of contents of selected journals; and query of experts.

Methods: Paired reviewers reviewed citations to identify randomized controlled trials (RCTs) of the impact of CHI applications, and all studies that addressed barriers to use of CHI applications. All studies were independently assessed for quality. All data was abstracted, graded, and reviewed by 2 different reviewers.

Results: One hundred forty-six eligible articles were identified including 121 RCTs. Studies were very heterogeous and of variable quality.

Four of five asthma care studies found significant positive impact of a CHI application on at least one healthcare process measure.

In terms of the impact of CHI on intermediate health outcomes, significant positive impact was demonstrated in at least one intermediate health outcome of; all three identified breast cancer studies, 89 percent of 32 diet, exercise, physical activity, not obesity studies, all 7 alcohol abuse studies, 58 percent of 19 smoking cessation studies, 40 percent of 12 obesity studies, all 7 diabetes studies, 88 percent of 8 mental health studies, 25 percent of 4 asthma/COPD studies, and one of two menopause/HRT utilization studies. Thirteen additional single studies were identified and each found evidence of significant impact of a CHI application on one or more intermediate outcomes.

Eight studies evaluated the effect of CHI on the doctor patient relationship. Five of these studies demonstrated significant positive impact of CHI on at least one aspect of the doctor patient relationship.

In terms of the impact of CHI on clinical outcomes, significant positive impact was demonstrated in at least one clinical outcome of; one of three breast cancer studies, four of five diet, exercise, or physical activity studies, all seven mental health studies, all three identified diabetes studies. No studies included in this review found any evidence of consumer harm attributable to a CHI application.

Evidence was insufficient to determine the economic impact of CHI applications.

Conclusions: Despite study heterogeneity, quality variability, and some data paucity, available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.

The International Alliance of Patient Organizations (IAPO) released a “Policy Statement” last week to outline recommendations for information providers to meet consumer information needs. IAPO calls for greater patient involvement in policy development. IAPO explains the need for the statement:

“At present, the patients’ voice is not valued enough in policy-making and practice.  Patient involvement is often merely tokenism; its influence on policy-making can be restricted by practical and financial structures, differing knowledge bases, cultural barriers and personal attitudes.  Patient involvement should not be dependent on the good will of individuals but institutionalised in policy frameworks in order to become the rule, rather than the exception.”

IAPO’s policy statement includes four specific recommendations:

1. Stakeholders should extensively review existing healthcare mechanisms and structures for patient involvement, working with patients and patients’ representatives so that patient involvement is integrated into all decision-making processes, occurring from the start and on an ongoing basis.

2. Patient involvement initiatives should follow IAPO’s guidelines which incorporate the following:

* Robust and transparent mechanisms to ensure that patient views are acted upon, not just recorded
* Inclusion in initiation, design, implementation, communication and evaluation of initiatives
* Practical, psychological, financial and educational support for participants
* Varied methods to reach underrepresented groups and to gather a diversity of views

3. Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas:

* Expert committees (e.g. ethics committees, reimbursement committees, governmental advisory committees, healthcare prioritisation and resource allocation committees)
* Regulatory processes
* Facilities design and development (e.g. hospital construction or refurbishment)
* Education and training programmes design (e.g. for health professionals)
* Research development (e.g. clinical trials design)
* Care and treatment guidelines design

4. All patients’ organizations should insist on involvement in all relevant health, economic, social and other policy-making where decisions will have an impact on patients’ lives.

The IxCenter, IDEO and the California HealthCare Foundation (CHCF) have just published a new report, “Innovating with Information Therapy (Ix): Prompting Transformational Change with Safety-Net Populations.” The report represents our findings and learnings from a collaborative project between the IxCenter and IDEO with funding and guidance from CHCF, as well as input from several experts and physicians who serve safety-net populations.

The project had two primary goals:

1. Identify and illustrate new information delivery mechanisms that prompt patients to improve their self-care behaviors.
2. Help safety-net organizations understand how prototyping methodologies can increase the efficiency of implementing new ideas.

One of the first things that we did was to learn directly from consumers themselves through ethnographic observation and structured consumer interviews. From there, we reconvened as a group to do storytelling and share insights we gained from consumers. The process then shifted to a group exercise of generating themes and how-might-we statements.

The second day began with intense brainstorming, followed rapid prototyping in which we develop what IDEO calls “10-dollar, 10-minute” prototypes. The idea was to actually develop something concrete and then we presented these prototypes to three people who live with chronic conditions. Before building out more fully, it’s critically important to get direct feedback from the target audience for your innovations.

Far more detail about what we learned and what we developed can be found in the report. We look forward to lots of feedback on our findings, and suggestions for where we might take this work next.

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.

Despite the personalized attention I get in our pediatrician’s office and their general responsiveness to calls — both to their own nurse call line and during on-call hours — I find certain aspects of this 20th-century practice frustrating. The most important ongoing issue relates (not surprisingly) to the one chronic condition we have to manage: The intermittent asthma of my youngest son, 5-year-old Ryan.

Back in April, at the height of Washington’s spring allergy season, I wrote about my frustration in feeling unprepared to help Ryan in crisis. After another asthma flare-up two weeks ago when Ryan had a mild fever, I decided that I needed to take a more active caregiver role. It was time to become an “im-patient consumer.”

The first need to address was the idea I had back in April — empowering Ryan and his family to feel confident in using an inhaler and spacer when he needs albuterol (rescue medication) immediately.

Step 1: I ordered a Flip Video cam via Amazon.

Step 2: I told Ryan that we were going to the pediatric allergist’s office and I’d videotape the doctor showing Ryan how to use the inhaler. To which Ryan responded with high face lighting up, “Cool!”

Step 3: At the outset of the visit, I explained the issue to our doctor and I instructed him that I would videotape him demonstrating use of the inhaler and spacer to Ryan.

Step 4: I filmed two approximately 30-second video segments — first, facing the doctor and second, facing Ryan.

Step 5: When I got home, using FlipShare, I quickly emailed the videos to my wife and Ryan’s grandparents with copy to me (the people most likely to be present when Ryan needed help with his asthma).

Step 6: I sat down with Ryan to watch the videos. I don’t know about your 5-year-olds, but with mine, just about the only thing cooler than playing on Daddy’s computer is watching video of himself on Daddy’s computer.

Step 7: We’ll continue to watch and practice until he (and his parents) feel comfortable that he can use the inhaler well enough to get the medicine he needs to help him breathe more comfortably when he’s wheezing and coughing. Ryan may not yet be able to define “self-efficacy” but we’ll all know it when we see it.

Result: I have an empowered 5-year-old at home now.

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).

The following is a guest post from Arna Ionescu, who is Domain Director, Connected Health for a leading innovation design firm, IDEO, an IxAction Alliance member. This follows up on earlier guest post she wrote, explaining how this innovation test evolved. You can also find more background on the IxCenter’s increasing emphasis on Ix innovation design. 

In our July IxAction Alliance webinar, we interactively brainstormed ways we could leverage curiosity to prompt higher engagement with information therapy. Out of all the ideas generated, participants picked the “High Blood Pressure Club” to explore further. A few weeks ago, I wrote a blog entry about our efforts to better understand the parameters of this club through a “$10, 10 minute prototype.”

Since reducing blood pressure takes a long time, we used the analogous context of gas guzzling to run our experiment. Our three participants self-reported long commutes and minimal awareness of gas consumption. After a week of measuring their baseline gas usage, we inducted them into the “Gas Guzzler Club” and provided a week of information therapy. This involved a short video and daily tips through a channel of their choice (email, text or voice – all three chose email).

So did it work? In terms of the before and after gas consumption one participant did better, one worse and one stayed the same. While the numbers are inconclusive, our follow-up conversations with each participant revealed interesting and sometimes unexpected insights.

1. Our guilt trip was effective only to a degree. Participants juxtaposed words like “pejorative” and “pariah” with “motivational,” and they wanted to take action to get out of the club. However, the guilt only got them so far. One participant said he decided not to remove his roof rack because of the status he associated with that accessory. Name-calling did not outweigh his ego’s need to posture.
2. Feeling that the others are real, living, breathing people is critical. Our participants commented that being asked to participate by a person they knew was critical to keep them going. They commented that receiving the tips from a real person named “Emily” made them feel accountable. They commented that they wished they had more connection with others who do the same drive so they can learn from others’ successes. They commented that they wished they could see the group’s success – how much gas and money had their group of x people saved – since that would feel more significant than just their solitary success. It was clear that the secondary motivation prompted by continuous interaction with real people was as motivational, if not more so, than the primary motivation of reducing gas usage. The design of the club and communications should elevate that human connection and support.
3. The information therapy and the rewards must be personalized. People crave a genuine connection, and if their specific situation and preferences aren’t taken into account, then they’ll tune it all out. Participants commented that both tips and rewards must be personalized; tips must be relevant to their particular drives and rewards must correlate to what matters most to each individual.
4. Getting past the initial skepticism takes effort – so be prepared for it. Participants didn’t buy that small changes would make a difference. The design of this club should include a mechanism that provides constant feedback correlating the output data with a person’s actions. People forget what they did and have trouble relating cause and effect, so we need to help them with that.

This is a sample of the insights we culled from our $10, 10-minute experiment. This experiment wasn’t about statistical significance, but about developing a good sense of what matters to people and where our risk factors lay should we pilot an actual High Blood Pressure Club. Given our experience, we feel the idea holds merit, and we know more about where and how to focus our design efforts.

Who’s interested in taking this further?

Kaiser Permanente released two new ads as part of its ongoing “Thrive” campaign. Although both are quite entertaining, the one that struck me most is titled, “Connected.” Much has been made of Kaiser’s multi-billion dollar investment in health information technology (HIT), but perhaps what has received too little attention is how they structured it.

What the “Connected” ad does masterfully is to visually, technologically, and audibly demonstrate that all its technological investment has its member at the center and is focused on facilitating connections for that member. Connections to data, information, clinicians, and ultimately to everything that a member might need to manage their health and “thrive.”

This should not come as a surprise. When Kaiser launched their Epic implementation several years back, they decided to call it “HealthConnect.” Now, their vision is playing out among the more than 3 million Kaiser members taking advantage of that connectivity.

The connection theme deserves more attention in the national debate on reforming the health care delivery system. Connections among people and information can be incredibly powerful in enhancing clinician-patient relationships, creating truly patient-centered medical homes, and facilitating participatory medicine.

It’s important to note, however, that connection is about far more than simply creating electronic links between people and data. In order to maximize the connection potential, the data need to be translated into understandable, meaningful, useful information for each user. That information needs to be accessible in a convenient way for each person, and it must be proactively delivered to them in a just-in-time fashion in a way that engages them to initiate effective actions.

When we put all that together, those connections can create effective, efficient health care delivery.