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.

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.

The Institute of Medicine (IOM) released its list of the top 100 topics that should be addressed in comparative effectiveness research (CER) now — thanks to $1.1 billion in the American Recovery & Reinvestment Act — that the federal government actually has the resources to do substantial CER. IOM has prioritized the list by creating four quartiles, noting that the first quartile is the highest priority group, etc.

In order for the federal government to make good use of the huge pot of CER money, there are at least five things that they need to do to ensure its value and actually change care delivery. 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.

That’s why I was heartened by the IOM’s top 100 list — though certainly I’d move a few up a quartile or two. The list has many projects that fit my priorities, including a strong emphasis on CER to reduce health disparities.

Here are some examples of potentially valuable CER projects in the first quartile:

• Compare the effectiveness of dissemination and translation techniques to facilitate the use of CER by patients, clinicians, payers, and others.
• Compare the effectiveness of comprehensive care coordination programs, such as the medical home, and usual care in managing children and adults with severe chronic disease, especially in populations with known health disparities.
• Compare the effectiveness of interventions (e.g., community-based multi-level interventions, simple health education, usual care) to reduce health disparities in cardiovascular disease, diabetes, cancer, musculoskeletal diseases, and birth outcomes.
• Compare the effectiveness of literacy-sensitive disease management programs and usual care in reducing disparities in children and adults with low literacy and chronic disease (e.g., heart disease).

And those in the second quartile that really should be moved up:

• Compare the effectiveness of shared decision making and usual care on decision outcomes (treatment choice, knowledge, treatment-preference concordance, and decisional conflict) in children and adults with chronic disease such as stable angina and asthma.
• Compare the effectiveness of strategies for enhancing patients’ adherence to medication regimens.
• Compare the effectiveness of patient decision support tools on informing diagnostic and treatment decisions (e.g., treatment choice, knowledge acquisition, treatment-preference concordance, decisional conflict) for elective surgical and nonsurgical procedures—especially in patients with limited English-language proficiency, limited education, hearing or visual impairments, or mental health problems.
• Compare the effectiveness (including resource utilization, workforce needs, net health care expenditures, and requirements for large-scale deployment) of new remote patient monitoring and management technologies (e.g., telemedicine, Internet, remote sensing) and usual care in managing chronic disease, especially in rural settings.

Some from the third quartile that definitely could be prioritized higher:

• Compare the effectiveness and cost-effectiveness of conventional medical management of type 2 diabetes in adolescents and adults, versus conventional therapy plus intensive educational programs or programs incorporating support groups and educational resources.
• Compare the effectiveness of alternative redesign strategies—using decision support capabilities, electronic health records, and personal health records—for increasing health professionals’ compliance with evidence-based guidelines and patients’ adherence to guideline-based regimens for chronic disease care.
• Compare the effectiveness of different quality improvement strategies in disease prevention, acute care, chronic disease care, and rehabilitation services for diverse populations of children and adults.
• Compare the effectiveness of different strategies to engage and retain patients in care and to delineate barriers to care, especially for members of populations that experience health disparities.

And finally some from the fourth quartile that I also think deserve higher ranking:

• Compare the effectiveness of different techniques (e.g., audio, visual, written) for informing patients about proposed treatments during the process of informed consent.
• Compare the effectiveness of different disease management strategies for activating patients with chronic disease.
• Compare the effectiveness of different delivery models (e.g., home blood pressure monitors, utilization of pharmacists or other allied health providers) for controlling hypertension, especially in racial minorities.

These examples are not meant to be an exhaustive accounting of all the worthy projects proposed by the IOM. There was considerable attention to re-thinking the locus of care delivery — that is, evaluating the comparative effectiveness of emphasizing care that transpires outside traditional health care delivery settings. It’s also important to note that there are also a number of projects on the list that specify the need to assess CER using patient-reported outcomes.

I’m looking forward to the evolution of the CER agenda.

Here are some top-level reflections from the second day of the first-ever Health 2.0 Meets Ix Conference (see here for Day 1 thoughts as well)…

The online output from the conference demonstrates how fast the online user-generated world has changed. Matthew Holt and I met less than four years ago when he live-blogged the 2005 Ix Conference on The Health Care Blog. The concept of live-blogging our event seemed like a complete novelty at the time. In contrast, there were more than 100 different unique twitterers at our conference this year, and (according to Enoch Choi’s rough estimate) they generated more than 3,000 tweets.

Susannah Fox reported new Pew Internet & American Life Project data reinforcing that the average consumer’s first place to go for health information is their clinicians. Consumers rely more on professionals in health care than any other industry. It’s fascinating in the context of our lively discussion yesterday about what the concept of “expert” means in a field as complex as health care. The fact is that there’s so much that we don’t know—which is reminiscent of Einstein’s comment late in his life that he knew less than 1% of what there is to know about physics.

Thanks to Neil Calman for making sure that we not only focus on cost and quality, but just as importantly on equality. I couldn’t agree more. And more to the point for all of us in this space: As we evolve the Ix and Health 2.0 fields, we must ensure that the answers we come up with meet the needs of everyone in our diverse population. Otherwise, any gains in quality we achieve will increase the health and health care disparities that already exist.

Everything we do to reform the delivery system needs to start with the consumer. We can’t build patient-centered care delivery if we don’t let the consumer guide us to what will make it easier for them to live healthier lives. We can learn from consumers in several ways, each of which offers different information:

• Representative surveys of the population—allow us to understand the prevalence of various consumer behaviors
• Structured one-on-one interviews – provide a vehicle for a deep exploration of consumers’ perspectives on their health needs and desires
• Focus groups – similar to structured interviews, but introduce a group dynamic to understanding consumer perspectives
• Online communities – Teach us about what e-patients do all the time.
• Observations of consumers in their normal daily living and in their encounters of the delivery system – provide a window into what it’s exactly like to live in someone else’s shoes

Paul Wallace (who, in the mid-1990s, was still a practicing oncologist) shared his own story from one of his ovarian cancer patients that shaped much of what he does now. After demonstrating that she knew more about her specific condition than he did, she told him, “Don’t tell me what to do; tell me what it means for me.”

Danny Sands described how health care is a participatory sport, not a spectator sport. I couldn’t agree more, which I expressed in my post, “Baseball and Health Care: Only One is a Spectator Sport.”

Although no doubt some divergence of opinion existed among the more than 500 people with us for the last day and a half, I repeatedly heard from the stage, the audience and in the hallways a general consensus that Ix and Health 2.0 have far more synergies than tensions. Matthew, Indu and I clearly agree. But these two movements approach the patient-centered orientation of care from different perspectives. The exploration taught us all a lot about what we need to do to drive a reformed health care delivery system.

IxAction Alliance member Kaiser Permanente has launched a national public relations campaign to draw attention to the need to address health care disparities in the context of comprehensive health care reform.

Indeed, the growing ranks of uninsured (nearing 50 million Americans) is more than a huge problem. It’s a national embarrassment (or “national disgrace” as Kaiser puts it). But a lack of insurance is only part of the issue, as a variety of vulnerable populations suffer from both health disparities and health care disparities, even beyond insurance status. Kaiser has also put together a great clearinghouse of resources on the subject.

The Center for Information Therapy has been increasingly tacking the dual questions of:

1. What particular challenges do health & health care disparities mean for implementation of information therapy (Ix)  interventions? and
2. In what ways can Ix initiatives provide leverage in overcoming health & health care disparities?

This two-pronged approach is rooted in two related beliefs. First, it’s imperative that — in our quest to drive Ix advancement — we do it in a way that reduces disparities and a lack of attention to the issues of safety-net populations might result in the opposite. Second, we believe that we need to be innovative in developing solutions to overcome disparities rather than presume that simply by achieving universal coverage or investing money that we’ll solve the problem (not that both aren’t incredibly important).

For more on what we’re doing in this area, look at the Safety-Net Populations and Ix & Health Disparities categories down the right nav bar of this blog. Also, we’ve written an issue brief on innovative HIT solutions for the Medicaid population for the Georgetown Health Policy Institute’s Center on Children & Families.

Sometimes the greatest insights derive from the most obvious observations. Especially when they’re delivered by an articulate spokesperson, who speaks plainly from both data and his own experience. A presentation from California HealthCare Foundation President Mark Smith, MD, MBA, — available for viewing here — had some real gems.

The presentation, “Clinic of the Future: Will Yours Be One?” was directed at community health center clinicians and administrators, but many of his points apply to a broad spectrum of clinical practices. (You can also find the slides here.)

Smith shares examples of what some of the future of health care could look like but recognizes that most of clinical practice hasn’t changed since he was a resident a couple of decades ago. He asked the audience, “For those of you older than 30, what do you do even remotely like you did in 1990?” In other words, the tools we use to communicate, schedule trips, shop and do just about everything else are different than from that era, but most of health care delivery looks just about the same. No doubt there’s something wrong with this picture.

He got even more specific with respect to information therapy (Ix), again with a question that is not exactly groundbreaking and could be a guide for the future of health care delivery: “Why do most people go to the doctor’s office?  For information.  Do we get information the same way we used to? No, we do not.” But, he notes, the democratization of information has not substantially changed how most doctors practice today.

Smith talked through some examples of trying to create more consumer-centered approaches to organizing care and information. For example, for Minute Clinic, he dispensed with clinician concerns that consumers would take serious health problems or medical emergencies to walk-in clinics: “Patients aren’t that dumb; patients aren’t going to Wal-Mart if they’re having a heart attack.” He cited data in support of this as well.

Smith noted that these new health care organizations and online resources are specialized by level of severity, not by organ systems. That allows them to effectively “orient the intensity of their interventions to their patients’ needs.”

I’m vaguely reminded of some product tag line from many years ago (I can’t remember what it was for), “So smart it’s simple.” Sometimes all this health care redesign stuff seems like it shouldn’t be so complicated.

Ok…well, not by itself.  But follow with me for just a couple of minutes…

I attended an excellent briefing on Capitol Hill yesterday sponsored by the Institute for Alternative Futures in Conjunction with the Congressional Hispanic Caucus. The briefing, “The Health Disparities Collaboratives: Enhancing Quality and Reducing Disparities,” is part of the IAF’s Disparity Reducing Advances project, in which I have been involved for a few years.

Two of the central messages from all the excellent presenters (David Stevens, MD, Director, Quality Center, National Association of Community Health Centers; Paloma Hernandez, CEO, Urban Health Plan; Roland Gardner, CEO, Beaufort, Jasper, Hampton Comprehensive Health Services) were (not surprisingly):

1. Targeted patient education that is tailored to the community’s needs and supported in a variety of ways and is designed to engage and empower people to manage their own health (basically information therapy or Ix) is critically important to successful health care interventions in underserved populations.
2. No matter what these excellent CHCs do to improve health care services, these populations will continue to experience disparities because of the underlying poverty of their communities.

That got me thinking…  If those interventions described (in #1 above) have been shown to have an enormous impact on the health of these populations, maybe Ix and related initiatives can be applied to a wide variety of challenges that underserved populations face — to help with education, employment, and ultimately, poverty itself.

Sometimes I need to be kept in check that Ix is not a panacea for health care (and I am well aware that it is part of a panoply of tactics needed to redesign health care delivery), but perhaps sometimes I also need to think bigger. Where are the opportunities to extend the principles, research and insights we have gained from years of Ix advancement to improve society more broadly?

I’m sure there are many examples out there, so please let me know where you see them.

(Continuing to follow up with commentaries on insights from the 7th Annual Ix Conference…and the slides are not only available now, but they also are right-side-up!)

The day before the Ix conference, the California HealthCare Foundation released the report (“Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools”) that Ted Eytan and I authored summarizing the Patient-Centered HIT Initiative (funded by CHCF, the United Hospital Fund, Kaiser Permanente, and the Group Health Community Foundation). At the conference, Rachel Block–formerly with UHF and now the Executive Director of the New York eHealth Collaborative–provided an excellent overview of the project with a particular emphasis on our experiences with safety-net populations.

Susannah Fox–Associate Director of the Pew Internet Project and also a member of the PCHIT Advisory Group–responded with a presentation highlighting the digital thermometers she has created with Pew data. They provide a great snapshot of consumer use of Internet/email, cell phones and broadband, broken down by a wide range of demographic characteristics. Susannah has explained that access to electronic technologies is not a matter of a “digital divide” because access is not an “on-off switch” but more of a “dimmer switch.”

A few of her comments beyond the thermometers are worthy of considerable thought as we figure out how to maximize the potential of Ix and patient-centered HIT.

• Susannah notes that 80% of Internet health information seekers turned to a professional in a time of crisis–far greater than any other industry that Pew studies.
• It’s clear that low access does not equate with low interest–a finding that matches exactly what the PCHIT Initiative found.
• To better understand the Internet’s potential for health care, it’s critically important that we talk to those people who are not online as well.
• The world is changing rapidly, so it’s important to (as Susannah paraphrased Diana Forsythe) “design for what could be.”

What do all these findings from Pew and the PCHIT Initiative report mean for next-generation patient-centered care?

(Continuing to post on some of the session from our 7th Annual Ix Conference from June 12-13. Note that the PowerPoint presentations are now available. We had a minor glitch in our transfer to PDFs, so you need to rotate them sideways. We’ll get that fixed tomorrow.)

One of the most innovative Ix leaders in the safety-net provider community is Neil Calman, MD, the CEO of the Institute for Family Health (IFH), a network of federally qualified community health centers in New York. He presented in our Ix & Health Disparities Track in a session on “Engaging Safety-Net Providers in HIT” with Kyu Rhee, MD, MPP, Director of Innovation & Program Coordination, NIH Center for Minority Health & Health Disparities. IFH was one of the sites we visited during our Patient-Centered HIT Initiative.

Neil has a direct way of putting things and his presentation probably set a PowerPoint font size record. He started off by telling the audience that, “For the past 6 years we have done everything we could to help bring information to our patients to help them improve their health.”

He then frames this in terms of what it means for the clinicians at IFH: “We have worked really hard to be a model for how electronic health records could be used to help us become…Information Therapists!!”

Neil explained what they learned from their patients when they studied what the health care experience was like for people with chronic conditions in the southwest Bronx. What they found out was that–for many of them–going to the doctor’s office was often “traumatic.” They found two really important things. First, there was great distrust of, and disrespect by, health care providers serving racial an d ethnic minorities. Second, there was bad communication resulting in major misunderstandings.

So when IFH decided to invest $2 million in its EHR deployment, they did it with these two lessons from their patients in mind. Neil said, “We deployed our EHR in a way that would build trust wit our patients. And give them the tools to help them find their way through the health care system.”

That’s why they designed their exam rooms so there were flat-panel monitors that clinicians and patients could look at together and put printers in there so clinicians could print out Ix for their patients and hand it right to them.

It’s amazing what clinicians can do for their patients in EHR implementation if they start by asking them what they need and then bake that into their implementation plans. It’s too bad that’s not a requirement for every EHR deployment in the country.

African American men have the highest incidence and death rates for prostate cancer than any other racial/ethnic group in the US.  How can information therapy (Ix) promote increased health equity in prostate cancer outcomes?  One of the functions of Ix is to deliver relevant health information to consumers where they are – in this case, the barber shop.

Research suggests that community-based education efforts by barbers could increase prostate cancer screenings among African American men.  Barbers were trained on an educational intervention based on the principles of Paulo Freire’s critical pedagogy.  In this ongoing pilot study, barbers ask male clients over the age of 40 if they have been screened for prostate cancer.  Clients who have not been screened are educated about prostate cancer and informed that they are a candidate for screening.

The training resulted in a statistically significant increase in barbers’ knowledge of prostate cancer.  Screening rates are not yet available, but preliminary results from qualitative interviews indicate increased knowledge about prostate cancer in clients.

If you are interested in promoting health equity, join us at the 7^th Annual Ix Conference in Washington, DC on June 11 and 12.  The Ix and Health Disparities track on June 12 will address promising new interventions that have been developed to narrow health disparities.