Archive for: June 2011

Noodles of ODLs

Jun 17, 2011, 1:19 AM, Posted by RWJF Blog Team

By Steve Downs and Patricia Flatley Brennan 

On the heels of a recent meeting with our Project HealthDesign teams, we’ve been thinking a lot about how this Pioneer-funded national program has the potential to affect the way providers and patients share information that has personal and clinical relevance – and what that information may include. It’s interesting stuff.

Patients participating in Project HealthDesign studies are using technology to track personally meaningful information about their daily feelings, thoughts, moods and behaviors – or observations of daily living (ODLs) – and sharing this information with providers. Currently, nearly all of our project teams are beginning the testing phase, recruiting patients and providers to participate in the studies. Part of their task is to figure out which ODLs are relevant to share; another job is to share them in ways that are meaningful to all involved. We think the work of the teams may spark innovations in the patient-provider relationship and improve the management of chronic disease.

We’ve already learned that ODLs have the potential to provide clinicians with a richer picture of a patient’s overall health—addressing the entire continuum of care, not just acute episodes of illness.

We’ve also noted the complexities of tracking patient behavior and engaging clinicians to look at and act upon ODL data.

As we continue to track each team’s progress, we anticipate results that will help patients, technology leaders, policymakers and health care experts plan and implement new initiatives that put individuals and their needs at the center of the nation’s health information technology infrastructure.

Follow the work of our research teams as we report on their major breakthroughs and challenges, and learn more about the exciting work our Project HealthDesign teams are undertaking here

Project ECHO: A Game-Changer for Patient Care?

Jun 16, 2011, 4:32 AM, Posted by RWJF Blog Team

Note: This post originally appeared on The Health Care Blog June 14, 2011

By Brian Quinn, RWJF assistant vice president, Research and Evaluation:

I met Sanjeev Arora as part of the RWJ crowd at TEDMED last year and was pretty impressed with his approach–especially given the lack of access to care in poor and minority regions. Now there’s proof his approach works –Matthew Holt

On June 1 the New England Journal of Medicinepublished a study about how primary care providers can treat very sick patients who previously did not have access to specialty care.  The piece described Project ECHO, a disruptive model of health care delivery based on collaborative practice that has the potential to transform health care.  Supported by Robert Wood Johnson’s Pioneer Portfolio and based at the University of New Mexico Health Sciences Center (UNMHSC), Project ECHO was developed by Sanjeev Arora, M.D., a hepatologist at UNMHSC and leading social innovator.

The ECHO model organizes community-based primary care clinicians into disease-specific knowledge networks that meet through weekly videoconferencing to present patient cases.  These “virtual grand rounds” are led by specialists at academic medical centers who train providers to provide specialized care, share best practices and co-manage complex chronic illness care for patients with the local care team. Under this model, primary care providers treat patients in their own communities – burdens on academic center capacity are reduced, poor access to care is eliminated  (patients are no longer limited by geography when seeking quality care), and the health care systems’ capacity to provide high quality care to more patients, sooner, is dramatically expanded.

In the NEJM study, patients with hepatitis C treated by primary care clinicians working through Project ECHO achieved results that were identical to patients treated by UNMHSC specialists.  The evaluation also showed that the ECHO model can reduce racial and ethnic disparities in treatment outcomes.

Project ECHO offers promise as a game-changer for how patients with complex illnesses are treated.  Dr. Arora describes the power of ECHO’s knowledge networks as a “force multiplier,” which “transforms the dynamics and the capacity of health care delivery and the spread of best practices.”

In an accompanying editorial, Thomas D. Sequist, M.D., associate professor of medicine and of health care policy at Harvard Medical School and Brigham and Women’s Hospital, said Project ECHO “represents an important step forward” in addressing barriers to accessing specialty care.  He notes that the NEJM study raises several issues, including the need for  adequate health information technology to implement the ECHO model successfully, the critical role of academic medical centers in supporting the model and the potential for meeting local community health care needs by extending the model to additional chronic diseases.

Sequist makes excellent points, and Project ECHO is already addressing them head-on.

The ECHO model harnesses communications technology to form truly collaborative provider partnerships that permit care in home communities.  It connects the wealth of knowledge and expertise housed at academic medical centers and the desire of primary care providers to do more for their patients.  And although the findings from theNEJM evaluation focus on hepatitis C, the Project ECHO model has spread to include asthma, mental illness, chronic pain, diabetes and cardiovascular risk reduction, high-risk pregnancy, HIV/AIDS, pediatric obesity, rheumatology and substance abuse.

ECHO represents a fundamental rethinking of how we use our limited supply of physicians, how we engage a full care team in chronic disease management, how we teach best practices and how we provide access to quality care for all.  We know we have physician shortages, an aging population and 32 million more Americans who are going to become insured in the coming years.  Dr. Arora has developed a disruptive innovation that addresses these challenges.

Through ECHO, providers – not just doctors, but nurses, nurse practitioners, physician assistants and community health workers – are teamed to work together to the benefit of patients who receive accessible, high quality care.

Isn’t that what we all are striving to deliver?

A New Hope? (�but what about that pesky death star?)

Jun 15, 2011, 10:56 AM, Posted by Mike Painter

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: PatientsLikeMeAsthmapolis; 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.)

Putting It All Together

Jun 14, 2011, 12:54 PM, Posted by Steve Downs

I've just spent two stimulating days in DC, first going to the HHS/IOM Health Data Initiative meeting (aka "Datapalooza") and then at an HHS/Kaiser-sponsored Health Innovation Summit (see #futurehealth on Twitter).  What's clear is that this is an exciting time for innovation:  we're seeing companies pledging to enable patient downloads of their data (I heard "bluebutton" used as a verb for the first time); more releases of federal population-level data; and a gaggle of companies leveraging these data to offer terrific wellness apps.  The future's bright, indeed.

In thinking about how the pieces come together, the challenge seems a bit different now.  A few years ago, a key question was how to leverage the data in one's own personal health record to build apps that would help people take care of themselves.  An insight of the Pioneer-funded Project HealthDesign was that the data needed to drive those apps came not so much from the medical record but rather from the flow of life: observations of daily living (ODLs) about diet, exercise, sleep, mood, pain and more.  So apps needed a platform that would integrate both medical record data and this new set of patient-generated ODLs. 

Now, as I look around, I see multiple categories of data that one might want somehow integrated:  in addition to medical record data and ODLs, there's the population-level data that HHS and others are releasing (that can provide useful context and benchmarking), environmental data (mashing up your own geo-location data with data sets about the environmental factors associated with those locations), genomic data, and, of course, if you're the competitive type, comparative data from your social network.

What I've observed is many siloed apps.  I've got devices and web sites that either capture data (like the treadmill to the iPod to Nike+) or give me the opportunity to enter data (like putting my weight into Google Health), but nowhere that stores it all.  That doesn't bother me so much because at one level, where it's located isn't all that important as long as I'm confident that it's secure and reliable.  Missing are the abilities to a) present all of these disparately gathered data in some context that gives them meaning and b) to analyze these data to give me insights about patterns and correlations that would help me understand how to be healthier.  Where are the apps that will crawl across the different data stores and pull it all together? And what will they need to work? 

I'm curious to hear of companies that are trying to make this happen.  What are the best examples people have seen?

Self-Trackers Collaborate at 2011 Quantified Self Conference 2011

Jun 10, 2011, 12:46 PM, Posted by RWJF Blog Team

In a recent blog post, we told you about a group of pioneers who are making and using tools to track quantifiable qualities about their own bodies, habits, emotions and symptoms. They use this data to better understand how their decisions impact their health and other aspects of their lives.  

We had the pleasure of spending Memorial Day weekend with just about 400 of these self-trackers at the inaugural  Quantified Self Conference 2011. We also brought along a few invited guests to help us explore, collect and share ideas with those on the cutting edge of the self-tracking movement, and to provide us with some additional perspective as we seek to understand the potential self-tracking may have to transform health and health care.

You can read more about the conference and the potential from the perspective of one of our guests, Ethan Zuckerman with the Berkman Center for Internet & Society, who blogged prolifically throughout the weekend. Also, the San Jose Mercury News penned a great overview of the event. And the conversation is still going on at #QS2011.

We'll share more about our thoughts from the conference soon, but in the meantime, check out the first product to come out of our grant to Quantified Self and the Institute for the Future: The Complete Quantified Self Guide to Self-Tracking. This online resource guide, which is still currently in beta, aggregates all available tools for self-tracking. Each tool, app, and project is tagged, rated and reviewed by users, making it easy for beginners and self-tracking experts alike to harness the power of their own personal data to improve their lives.

We invite you to try out this new resource, or just take a closer look into how the Quantified Self community is tapping into the power of data to drive positive health outcomes. Then let us know your thoughts by leaving a comment or connecting with us on Twitter (@PioneerRWJF). Happy tracking.