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. You can also find more background on the IxCenter’s increasing emphasis on Ix innovation design.

Thank you to the IxAction Alliance members who participated in our interactive webinar last Tuesday. During the webinar we used IDEO’s design approach to tackle the challenge of providing effective Information Therapy (Ix) to a fictional character named Vernon, who has minimal resources and was recently diagnosed with high blood pressure.

To inspire solutions for this challenge, members of the IxAction Alliance submitted images of unexpected learning moments in their daily lives. These images spanned from public service billboards to Snapple caps and restaurant placemats. In advance of the webinar, the IDEO team synthesized the images into brainstorm questions.

The webinar attendees voted and selected the brainstorm question, “How Might We leverage curiosity to prompt Vernon to engage with Ix?” Following IDEO’s brainstorm rules, attendees submitted ideas using the webinar software.

More than 30 ideas were generated in the ten minute brainstorm, and a second vote allowed the attendees to select which idea to pursue further. Attendees selected the “High Blood Pressure Club.” We discussed “$10, 10 minute prototypes” – an approach that allows us to try out fast and cheap experiments to gain insight before costly design and implementation efforts.

Two members of the Alliance community volunteered to explore the High Blood Pressure Club further. In subsequent discussions, we refined the idea to an online forum that people join when diagnosed with high blood pressure. We hypothesized that members would compete to reach emeritus status. We further hypothesized that people might feel more supported if they were paired with a buddy in the club, making the competition a team sport.

As we refined the idea, a number of questions came up, including: How do we reward people? Is emeritus status enough of a motivation to participate actively? Should buddy pairs be random or selected by club members? What’s the best recruiting mechanism for new members?

We decided to explore our questions around emeritus status using a $10, 10 minute prototype. Because feedback in healthcare takes a long time, we identified an analogous context in which to run the test. Instead of focusing on lowering blood pressure, we would focus on lowering gas usage when driving.

Next week we will start a two-week experiment about our “Gas Guzzler Club.” Three participants will measure a week-long baseline of their gas usage. At the beginning of the second week, we will “induct” our participants into the Gas Guzzler Club, letting them know they can achieve emeritus status, and provide a short tutorial on how to use less gas. Additionally, we will send daily tips in a medium of their choice (text, email, or voice). At the end of the second week the most successful participant will be granted emeritus status. We will then interview each participant about their experience to gain insight into how well we motivated them.

This plan will take relatively little effort yet should reveal a lot well before we invest significant time and money. We will follow up with another post next week to fill you in on the start of our experiment!

For those of us parents with twins, we strive to prevent our homes from being natural laboratories for studying our children. Sometimes, it’s hard to overlook.

When my twins were toddlers, they often — like toddlers in general — were playing in the same space but not playing together. In child development lingo, that’s called “parallel play.”

For toddlers, parallel play is a natural phenomenon and nothing to worry about. However, when that term needs to be deployed to describe the communication between clinicians and patients, it’s time to shout, “Houston, we have a problem!” Parallel play in the clinician-patient relationship represents the antithesis of “participatory medicine.”

Thanks to Jane Sarasohn-Kahn at the Health Populi Blog, I came across new data from Harris Interactive that examined — among other things — whether patients share what they find on the Web with their doctors. When asked in 2007, 42% of consumers responded that they “never” share their online health info with their physicians; by 2009, that percentage rose to 56%. Yikes!

We also know from Pew Internet Project data that consumers’ number-one preferred source of health information is their docs, so we have to presume that this hidden Web information is not a desired situation from patients’ perspectives. Barriers to sharing information probably include some combination of: lack of adequate time; poor systems to facilitate information prescribing and exchange; and fear that doctors will not respond positively to the information consumers bring into the conversation from external sources.

The Internet should be a tool that helps elevate the level of discussion between clinician and patient, and it can be. Clinicians and delivery systems that have developed systems and infrastructure to facilitate information therapy (Ix) ensure that Web health information is built into the care delivery process. That facilitates better continuity of care and lays the groundwork for more holistic approaches to care delivery such as a truly patient-centered medical home.

Sarasohn-Kahn suggests that the recession may be part of the reason for this increase in parallel play, and she may very well be right. But whatever it is, it’s likely to exacerbate an already-fragmented care delivery process and lead to worse care for consumers unless we build more Ix infrastructure into the system.

Among the many things that made the IxCenter’s Patient-Centered HIT Initiative great was listening in to what patients were saying about their care. We can learn an enormous amount from listening to consumers about their care experiences.

IxAction Alliance member, MedEncentive, has had great success in controlling costs and improving the experience of care by using clinician and consumer incentives for prescribing information (doctors) and filling Ix prescriptions (patients). One of the things that they do in collecting their data is invite consumers to share their comments about MedEncentive’s information therapy (Ix) program.

When you put together a string of these comments, you begin to get a picture of what Ix can do to improve consumer engagement, enhance the clinician-patient relationship, and launch an environment of participatory medicine.

Since we know that 40% to 80% of everything that a doctor says to a patient is forgotten by the time he or she returns home…

“I am thrilled to be able to get additional information and even to print it out to read again later.”

“I have learned things from reading articles that are provided. My doctor tells me numerous things but it is always nice to be able to research more at my own leisure.”

“Program provides more detailed information than a patient usually gets in the doctor’s office. Information often answers questions that come to mind after the office visit.”

“This information that is provided helps me understand what it is that I actually have or need to do. My Dr may tell me at the time of my seeing her, however the information doesn’t always stick in my head if I am not feeling well. This reiterates the information that my Dr had told me at the time of my appointment.”

Consumers typically appreciate navigation to resources that are targeted to their own situation…

“This is very helpful. It gives more information that is specific to the condition without having to research it on line yourself. Thanks.”

Ix can elevate the level of dialog between clinician and patient so that they can make better use of their limited time together…

“I think this program is very helpful. It allows me to understand better the things that my doctor and I talk about.”

“the articles are informative…it gives me information that I may not get in a 15-20 minute doctor appointment”

“I can see that this program is beneficial to me, by reading I educate myself a lot, there is some stuff that doctor don’t go deeply because of time, I guess, and by reading all this info, it is like it makes the picture more clear. Thank you for doing this!”

“Good means of informing patients in a more in-depth manner than is often possible in a doc’s office”

“I feel that it gives more comprehensive information than what I received in the Doctor’s office.”

That reinforcing information facilitates true participatory medicine…

“I am able to ask my doctor questions because of the knowledge I get from information therapy.”

Ix provides necessary reinforcement to stimulate behavior change…

“In our fast-paced world we often need to hear the same thing several times from several sources! I appreciate being reminded of steps that can/should enhance my quality of life–healthy eating, regular exercise, regular medical check-ups, etc. Most of us KNOW these things, but often overlook them until it’s too late!”

And, ultimately, consumers feel more prepared for what lies ahead for them…

“I feel very strongly about the benefits of information therapy. I learn a lot from reading the information…. Now I know more of what to expect if my condition worsens.”

Finally, Ix can help change the fundamental orientation of the delivery system…

“Information therapy has been very beneficial to me. It confirms the preventative therapies that my doctor recommends to me. This is a plus to my taking good care of myself and not all the time relying on medicine alone. I like this focus on wellness - to me it is what healthcare is about and not “sick-care” where we only do things when we are already sick. Thank you for this brilliant innovation. I wish the whole country will spouse your Wellness Program.”

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.

The following is a guest post from Dorothy Jeffress, Executive Director of the Center for Advancing Health, an IxAction Alliance member.

It is an exciting time for those who support information therapy (Ix).  It seems that current health policy/reform discussions on Capitol Hill and around the Beltway are frequently touching on the need to incorporate strategies for enhanced patient engagement through targeted health information and integration of shared decision aids for example. But much of the future success of these new policies lies ultimately in the hands of consumers.  So as forward thinking as requirements for meaningful use in HIT roll-out might be, all of this recent rhetoric seems to overlook the fact that few consumers currently make use of available tools for selecting health plans, hospitals or physicians.   In fact at the Center for Advancing Health, we have noticed that few consumers are actually crying out for the responsibility of making more decisions about their health and health care.

Why do so many of us abandon the familiar role of savvy consumer when making decisions about our health care, and instead choose our health plan on the basis of its ads or the hospital recommended by the woman behind us in the 7-11 checkout line?

This question is the basis of a research report called “Getting Tools Used” issued in June by the Center for Advancing Health.  The aim was to learn from successful decision support tools outside of health care how to increase people’s use of tools to make decisions within health care.  Detailed case studies of four successful non-health-related tools were developed: Consumer Reports: Car Buying Guide; eBay; US News & World Report: America’s Best Colleges, and the FDA’s federally mandated Nutrition Facts Panels (NFP).  Five experts in health-related decision aids commented on the keys to their success and the implications for tools relevant to choices in health care.

The findings were clear:

• The successful tools all come from a trustworthy, objective source
• Their content is tailored to the interests of the audience
• Each tool is targeted to the users’ capabilities
• All of them are highly visible and readily available nationwide.

Implications of these findings for sponsors of health care decision aids can be found on the CFAH Website. For the rest of us, however, the critical issue is this:  Our indifference to health-related decision aids is not trivial.  Health care has never been more complicated.  We are more responsible for making more decisions about our care than ever before.  And the stakes of our decisions have never been so high.  But there is simply no way we can make well informed decisions without relying on objective information that is arrayed so that we can understand and weigh the trade-offs of our options.  Increasingly, being able to find safe, decent health care depends on our ability to locate trustworthy tools when we need them — and then to use them to help us make the choices that meet our needs and preferences.

We need better tools, yes.  But we also must recognize that to realize their benefit, we have to use them.

I find it interesting that the blogosphere continues to discuss the “false dichotomy” of our “Health 2.0 Meets Information Therapy (Ix)” Conference. On The Health Business Blog, Michael Segal, MD, PhD, blogged yesterday on this topic, concluding that, “the most useful resources come from getting physicians and patients to work together closely to come up with the insights and resources that are most useful,” which “also illustrates how the ‘tension’ between Health 2.0 and Ix falls away in practice.”

I agree (and the conference confirmed) that far more synergies than tensions exist between the two movements. I also am aware of many Health 2.0 approaches being integrated into Ix applications, and Ix offers a vehicle for integrating Health 2.0 tools into the care delivery system.

However, the core of the Health 2.0 movement — primarily spearheaded by entrepreneurs — remains mostly distinct from the heart of the Ix movement. For example, there is only one overlapping member organization (Enhanced Medical Decisions) between the 45 members of the IxAction Alliance and the 20 members of Health 2.0 Accelerator.

While we share a common objective of advancing patient-centered health information technology, there remains little commonality in the organizations driving each movement. What drives that difference? And what needs to happen to change it?