I had the recent good fortune to attend an Institute of Medicine Roundtable workshop on the Promotion of Health Equity and the Elimination of Health Disparities called Leveraging Culture to Address Health Inequalities: Examples from Native Communities.  The Robert Wood Johnson Foundation supported the November 14, 2012 Seattle event.  The meeting was a gathering of American Indian, Alaska and Hawaiian Native health and health care leaders, all talking about health and culture.  They told stories of resilient, strong, vibrant, conquered yet not vanquished people.  Their tales were wondrous and sad—troubling, provocative, sometimes angry, often humorous.  

One might think the IOM was doing a good, almost charitable, thing by shining some precious attention on these people. How nice for experts to listen politely to those stories of past cultures struggling against waves of current change.  Well, it was a good thing—but not necessarily just for the natives.  There was immense, quiet wisdom and power there—for everybody. 

My recent journey to Mayo Clinic’s Transform 2012 began with a bike ride. I was up at 4:00 a.m. and drove for an hour to join hundreds of other cyclists in northern New Jersey for a 7:15 a.m. ride start. 107 miles and 7,600 feet of climbing later, I uploaded my ride stats to Strava, chatted some with colleagues, grabbed a bit of post-ride lunch, and blasted home. I made it to the Philadelphia airport just in time for my 7:00 p.m. flight. After a connection in Chicago, I arrived in Minneapolis around midnight, rented a car, and then drove 80 miles in the early morning hours across rural Minnesota, eventually arriving at my hotel in the town of Rochester.

Bright and early that morning at the meeting, feeling surprisingly bushy-tailed, I encountered a large gathering, almost like a mirage rising from the prairie, of curious, engaged people talking earnestly about how they were transforming American health care. But of course it wasn’t a mirage. It was real and impressive. Our national audacious effort to transform the health care colossus from its current state of dysfunction and inefficiency is impossibly complex and difficult. We know that. Nevertheless, my reaction to Transform 2012 was not simply because I found a large gathering focused on that health care transformation. No, the truly remarkable thing is that here was yet another of many large gatherings of engaged people working all over the United States to transform health care.

It didn’t appear on the lightning strike map, but lightning did indeed strike a young medical student inside the Washington Convention Center right in front of about 1,500 amazed spectators on the first day of The Health Data Initiative Forum III: The Health Datapalooza. Everyone is fine—though our medical student may never be the same again.

Actually, this story began long before Datapalooza, of course. Fourth-year medical student, Craig Monsen, and his Johns Hopkins Medical School classmate, David Do, started collaborating on software applications soon after they met in first-year anatomy class. Craig graduated from Harvard with degrees in Engineering and Computer Science and David from University of Minnesota in Bioengineering.

They’re not quite Jobs and Wozniak—neither dropped out of anything—yet—although Craig, at least, is planning to skip or delay residency. You see, after seeing the Robert Wood Johnson Foundation (RWJF) Aligning Forces for Quality Developer Challenge last year—they got very serious about bringing to life their vision of new applications that could help patients and consumers make great health care decisions.

Picture a version of the Star Wars opening crawl:

A long time ago in a galaxy far, far away. . . . It is a period of enormous change and worry. The challenges are great. The status quo of poor health care quality and crushingly high costs is bearing down on the people—but that enemy is also under attack. A growing band of folk from all parts of the galaxy are attempting to bring every imaginable force—technology, market, government, people power—to the cause.  No one’s certain how it will all turn out… 

Now, cue ominously Darth Vader’s imperial march theme… (Fade out).

On June 9th I participated in the 2011 HHS/IOM Health Data Initiative Forum and self-styled “Data-Palooza”.  It was exciting.  Lots of dynamic leaders attended —from the government, the software development world and other industries—lots of Twitterati—social media personalities.  The place buzzed, literally.  (It was just missing the Tatooine bar music.)

I couldn’t help but flash back to last year’s markedly more freshman, inaugural meeting and compare.  The differences one year later were striking—even startling at times.  The obvious progress could make one pretty hopeful.  The vision of creating tools that use previously moribund federal (and other) data in unique ways to solve real problems is already bearing some remarkable fruit.

During the “Data-Palooza” plenary session, a parade of app developers demonstrated technology that mines and harnesses data for very cool, practical purposes.  High points: PatientsLikeMe;  Asthmapolis; and Multistate Foodborne Disease Outbreak Investigation System  (catchy name…).  The whiz bang, jaw dropping technology of these, and other, examples was impressive.  Last year, one really had to suspend to imagine how all this talk might actually have a major impact.  This year it could seem as if the vision isn’t keeping up with the technology.  In fact, perhaps we should be bolder, much bolder.

But, then, the enormity of the challenge brings one right back down to Earth—or rather—Endor.  In spite of the great hope all this vibrant creativity inspires, one wonders about the potential, even cumulatively, of these new app tools to make a dent on our high cost, low value care problems.  In the closing session, Tim O’Reilly pointedly noted that unless we find ways to move the embedded status quo health care incumbents aside just a bit—or at least find ways to open markets so that new approaches can take root, thrive, compete—all this work will be terrific—but ultimately not game changing.  The status quo will soldier on, as always.  In my daydream (read nightmare) I started worrying that these new technological wonders would, rather than triggering imperial defeat, instead end up being like Ewok wooden spears bouncing ineffectually off the usual huge armored imperial Walkers.

But all is not lost, of course.  As we know, the rebels did ultimately destroy the death star and defeat the empire.  They did it by working together and not relying on any single silver bullet (er, blaster) or group or approach.  The new technology on display last week that helps people practically use data to solve tough health and health care problems is incredibly important.  We just need to make sure that we’re also simultaneously doing all the other necessary things—like improving market information, adjusting payment to reward high value, waking up the sleeping health care consumer and supporting our Jedi health professionals—to allow innovation to do what it should be doing for us.  That is, we need to create the conditions that will allow creativity to help us rapidly achieve sustainable high value care focused intensely on and built entirely in partnership with the patient and consumer. 

Cue epilogue theme.  (Roll credits.)

“Can you imagine a time when we fully incorporate mental and dental health into our thinking about health?  What is it about problems above the neck that seems to exclude them so often from policy about health care?”  That’s what Institute of Medicine President Harvey Fineberg asked in 2009.  On April 8^th the IOM released a new consensus committee report, “Advancing Oral Health in America”. That committee’s 2011 response to Dr. Fineberg was essentially—“not this time—change starts here.”  I had the great privilege of participating on that committee along with 14 others from a variety of backgrounds and expertise.  Certainly, we were daunted by the enormity of the nation’s oral health challenge but also hopeful that there are, in fact, tools and approaches that could begin to make a difference. 

The IOM convened this committee based on a 2009 HRSA request for recommendations on a potential HHS oral health initiative.  The committee deliberated for almost a year while the long and contentious health care reform debate reverberated.  The specific charge for this committee was relatively narrow:  to provide strategic recommendations to HHS, specifically, regarding a department-wide oral health initiative.  Nevertheless, the national health care reform debate only served to highlight the concurrent need for reform in both oral health as well as health care, overall. 

And there were a few ghosts in the mix, so to speak—namely past reports, statements, actions, initiatives in oral health—good faith efforts all—juxtaposed against the harsh fact that the problems remain.  More than 10 years prior, the surgeon general issued a landmark report entitled, “Oral Health in America”.  It described the poor state of oral health as a “silent epidemic”.  Unfortunately and in spite of that warning, that epidemic remained altogether too silent.  In fact, arguably, nothing fundamentally has changed in those 10 years.  Entirely preventable oral diseases remain prevalent.  Oral health is part and parcel of overall health care—but the professions treat them as distinct and separate.  Vulnerable groups continue to suffer from disparate oral health outcomes. 

Even potentially more disturbing—we now recognize we’re essentially “flying blind” when it comes to the quality of oral health care.  Literally, we simply do not know much about the quality of oral health care for a variety of technical and policy reasons.  We don’t have great data sources for oral health care measures.  Even if we did, we do not have quality metrics to assess the quality of oral health care.  That’s fairly worrisome if one extrapolates from the overall health care experience in quality measurement and improvement.  In overall health care, once we started measuring the quality of that care, that’s when the scope of safety and quality problems—not to mention cost and value issues—really began to surface.  In oral health care right now, we don’t even know what we don’t know. More to the point, there’s no reason to think oral health care will be different than overall health care—and it could be worse—much worse.  In any event, it’s not acceptable to assume high quality in oral health care.  The public and our dedicated health professionals deserve to know.

So, the stakes are high—this report on improving oral health absolutely must be different than past efforts—but how?

The committee reviewed mountains of evidence, testimony, and specially commissioned reports.  From that evidence, the committee provided seven recommendations to the Secretary outlining specific steps to change the way the department approaches oral health as a governmental agency—and the way the department helps promote and lead improvement in the nation’s oral health.  Those recommendations ranged from (1) specific things the department should do to prioritize efforts—including an explicit challenge to open the initiative to patient and consumer participation, oversight and leadership; (2) an emphasis on strengthening prevention, promoting health literacy, and dramatically improving the ability and capacity of the health professions to address and improve oral health; (3) a focus on developing innovative new delivery system and payment strategies to support high value oral health care; (4) concerted efforts to use an ever expanding array of data for research—and, importantly, to develop and construct a range of oral health quality measures on performance, cost, efficiency and outcomes—and then make that information transparent and useful; and finally (5) an explicit challenge to HHS to hold itself publicly accountable year after year for action and improvement.

Of course, only time will tell if some new group 10 years hence looks back on this report as a turning point in improving the nation’s oral health—or says nice try, back to the drawing board.  We on that committee sure hope that the answer is—and the nation critically needs it to be—the former.

[These comments are the personal views of Dr. Painter and do not represent a statement by the IOM.]