Pioneering Ideas

Hack-a-Thon for “Unmentionable” Issues in Adolescent Health

Calling all app developers! On March 31, ISIS, TechSoup and Health 2.0 are teaming up for a free, live hack-a-thon event in San Francisco to design apps to address youth health-related “unmentionable” activities, including dating violence, depression, sexually transmitted diseases and substance use. The event, sponsored by an RWJF grant, aims to create apps that will excite young people to share honest, real-time, private information about their taboo, embarrassing or “unmentionable” activities with researchers and program experts who work with youth.

The hack-a-thon will bring together developers, designers, innovators and entrepreneurs for rapid development of progressive concepts and prototypes to be developed by the participating teams following the event and at future hack-a-thons. ISIS and TechSoup will partner in the future development and distribution of the concepts and designs. The grand prize winner will be revealed at ISIS’ annual Sex::Tech conference and take home $1,000 cash.

Interested? Register now.

Discovery Channel Documentary Highlights Project ECHO

For some years now, health care innovators have been using emerging health information technologies to transform everyday clinical care. But Pioneer grantee Project ECHO applies these technologies in an entirely new and revolutionary way:  to spread medical knowledge throughout the health care workforce, and, in the process, form collaborative practices, build new professional skill sets and exponentially expand the capacity of the entire health care system.

Project leader Sanjeev Arora, MD, of the University of New Mexico Health Sciences Center, developed the ECHO model to break down medical “knowledge monopolies” so that doctors, nurses and other clinicians can deliver better care to more people who need it, right in their communities. Project ECHO uses video communications technology to create real-time virtual networks for sharing the best medical practices and knowledge between specialists at a university medical center and local primary care teams. 

A new Discovery Channel documentary, Health I.T.: Advancing Care, Empowering Patients, features ECHO amongst a handful of innovative efforts using technology to transform patient care. The segment tells the story of a primary care physician living in rural New Mexico who uses technology in a new way to address her patient’s condition. View the program online or watch it on the Discovery Channel this Saturday, November 26, at 8:00 a.m. ET.

For more information on Project ECHO:

• Read a research evaluation published in the New England Journal of Medicine
• View our Facebook infographic

Advancing the field of mHealth with mEvidence

In August, Pioneer's Al Shar shared his takeaways from the 2011 mHealth Evidence Workshop that we sponsored along with NIH, NSF and the McKesson Foundation. In that post, Al mentioned that the participants were eagerly putting together a statement of direction and would soon publish the key outcomes of the meeting.

We are pleased to report that the group has since shared those thoughts, which we have included below. Additionally, we encourage you to watch the archived webcast of the event.

Let us know how you think the mHealth ecosystem can be strengthened to deliver transformational improvements in the research and practice of health and well-being.

National and global scientists, policymakers, health professionals, technologists, and representatives from regulatory and funding agencies gathered for the invited mHealth Evidence Workshop at the National Institutes of Health August 2011 to discuss and identify more effective methods to generate evidence of efficacy and effectiveness for the unique emerging science of mobile health (mHealth).  mHealth draws from medical and clinical research, behavioral theory, user interface design, sensing technology, computer science and statistical inference to improve health outcomes. The meeting was sponsored by the Pioneer Portfolio of the Robert Wood Johnson Foundation, the McKesson Foundation, the Office of Behavioral and Social Sciences and National Heart, Lung and Blood Institute at the National Institutes of Health, and the National Science Foundation. The overall conclusion of workshop participants was that mHealth has great potential to support health and well-being worldwide, and, therefore, there is a need to enhance its scientific foundation. mHealth tools and interventions must be backed up by rigorous scientific development, evaluation, and evidence generation to enhance meaningful innovation and best practices, and to validate tools and methods for health professionals, consumers, payers, governments, and industry.

Meeting participants also concluded that the science of mHealth must use and further develop systematic research methods adapted to the technology, clinical or program intervention, in addition to analytic methods to process the vast amounts of streaming, tagged, complex and layered data that becomes available using mHealth technologies. 

This spectrum of methods will need to include not only randomized clinical trials, potentially optimized to leverage mHealth advancements, but also alternative study designs and methodologies that  ensure that research studies are able to provide timely information within a rapidly evolving field.  Evaluation methods that incorporate principles of existing study methodologies, including randomization, step-wedge design, n-of-1 trials, and Practice-Based-Evidence (PBE) methodology were discussed, in addition to methods that borrow from engineering, including Multiphase Optimization Strategy (MOST) and Sequential, Multiple Assignment  Randomized Trials (SMART).  Ethical issues related to collection, storage and use of real-time masses of identifiable personal data were also acknowledged as topics requiring updated guidance.

As a follow up to the workshop, participants are identifying and developing the methods needed to best generate mHealth evidence. They are forming working groups to engage the mHealth community in developing a research agenda centered on design methodology, analytic methods, and mHealth technologies. These efforts will support a rigorous and innovative mHealth ecosystem with promise to deliver transformational improvements in the research and practice of health and well-being.

What does mEvidence need to look like?

There is something magical that happens when talking about mHealth. People start believing all of the wonderful things that a phone, together with the right gadget, can do: remind me to take my medicine, monitor my vitals, inform my doctor when something goes wrong, just plain automatically keep me healthy. The last few years have seen a huge growth in cell phone companies, technology companies, governments, application and device developers rushing to deliver product in this space. Just look at the over 500% increase in attendance between the 2009 and 2010 mHealth Summit (with the 2011 meeting promising to be even larger.) Along with the hype and the hope, people are beginning to ask for evidence and to question the value of growing a collection of isolated gadgets and apps.

I’d say that mHealth is somewhere around the asterisk on the “hype cycle” model developed by Gartner.

With that as context, RWJF’s Pioneer Portfolio, together with NIH, NSF, HHS and McKesson Foundation, organized a one day event to begin the process of advancing the Science of mHealth. What does mEvidence need to look like? What are the right methods to accelerate the evaluation of the efficacy of mHealth technologies?   First steps to address this have largely been focusing on attempts to demonstrate value by using a traditional randomized controlled trial, which is often ill suited to testing the interventions that mHealth enables. (It’s interesting to note that on August 14, Paul Meier died. I’d be interested in knowing what he’d be thinking.) When we first started to plan this meeting, I wondered how interested the field would be. After all, this is the drier, academic side of mobile health. I was surprised! We had 106 responses to our call for whitepapers of which we were able to choose 23. The demand for attendance was such that NIH had to arrange for a webcast.  Perhaps looking at transforming the way conduct research [in light of new technologies] is not so dry after all. While the attendees were predominantly US-based, academic, international and corporate interests were represented. The outcome was even more surprising. The group agreed that this was a good and important direction, that we needed to have a collaborative, ongoing and forward looking agenda and that the Science of mHealth was critical to achieving a high enough plateau of productivity. The group will soon issue a statement of direction and commitment, publish the key outcomes of the meeting and develop a longer-term agenda. We are also developing an online community so that we can keep the discussion going. In a couple of weeks the webinar will be available for people who missed it and we will work to keep the groundswell moving.

I’d be remiss not to include the fact that closely aligned is the ideas and ideals of Open mHealth and the work of Pioneer grantees Ida Sim and Deborah Estrin. Not only were they and a number of people in the open mHealth area participants, they organized a second day to help formulate how they were going to develop and move forward.

This is important and people are paying attention. One way that you can help is to respond to the request from the NIH Director’s Common Fund, which is designed to fund transformative research that is of interest to the health community. The Common Fund officials are looking for the community (that is you!) to weigh in on new ideas for funding. Go here to add your comments.

 

Grant Announcement: IFTF Announces Partnership with Quantified Self to Build The Complete Guide to Self Tracking

This post originally appeared on The Institute for the Future's blog on Jan. 12, 2011. 

The increasingly widespread behavior of self-tracking is a regular thread that weaves its way through many of the forecasts at IFTF, from our Health Care 2020 map to our Map for the Programmable World. After following this trend for some time, we are thrilled to announce a formal partnership that will make self-tracking resources more widely accessible to the public and continue to support our mission of social action research.

The Robert Wood Johnson Foundation Pioneer Portfolio, which supports bold ideas at the cutting edge of health and health care, has awarded us a year-long grant, in partnership with The Quantified Self, to support the development of a complete online self-tracking resource guide. To kick off the project, an infrastructure is currently being built that will allow each self-tracking tool to be tagged, rated, and reviewed by the global self-tracking community. 

 "People interested in measuring their cognitive function, or sleep, or body fat, will be able to come to the guide to learn about the different tools available, interact with people who are measuring the same thing, and discover new ideas about how these observations can be useful," said Alexandra Carmichael, Director of Quantified Self Labs, who is running the project.

Our role at IFTF will also involve researching the dynamics of this shared online resource as it evolves. 

The rise of the Quantified Self movement is a major transformation that will impact not only how we understand ourselves but also how we relate to institutions and professional experts. When people are able to collect their own data, aggregate, and analyze it, they are empowered to make decisions and choices that they previously outsourced to others. IFTF has been following and supporting the work of Quantified Self and we are happy to be working with Kevin, Gary, and Alex on this project.

IFTF is excited about contributing to this project as a way to gather and organize the world's collective self-tracking knowledge in one central place, facilitating collaboration between experts who are already engaging in this behavior and beginners who are just starting out. We will post another update when the guide is built and ready for contributions.

 

Tim O’Reilly to Host ‘Unconference’ for Health, Tech Leaders

Today we announced a grant to O’Reilly Media  to  sponsor the Foo Health Camp in 2011, a cross-discipline, immersive, informal 'unconference' that will take advantage of a growing interest in applying Web 2.0 and open-source thinking in health care to spark ideas that can expedite changes in the ecosystem of health care services. This event is being announced on the heels of last summer’s O’Reilly Open Source Convention, where we helped sponsor the event’s first-ever health track. A full report of that event’s takeaways is now on our Web site.

The Foo Camp-unconference format was pioneered by visionary Web leaders Tim O’Reilly and Sara Winge of O'Reilly Media. O’Reilly Media is a leading technology publisher, conference organizer and supporter of the free-software and open-source movements (Foo stands for “Friends of O’Reilly). The format, in which attendees design the agenda on the spot, produces more brainstorming and group problem solving than formal presentations – which is clearly conducive to catalyzing the type of outside-the-box thinking needed to transform health and health care.

This health camp will be an invitation-only meeting, bringing together about 150 key players from health care and emerging technology, including researchers, funders, health care executives, software developers, entrepreneurs, journalists, policy experts, thought leaders and Robert Wood Johnson Foundation team members.

We will be sure to fill you in on more details as they become available, including how to participate in the conversation via social media.

For more on Tim O’Reilly’s vision on how technology will change health and health care – and why O’Reilly Media is jumping into the field – you can watch his interview with Pioneer Team Leader Paul Tarini below. Then leave a comment and let us know what you think!

 

 

It’s Starting to Add Up - A Few Observations from AMIA 2010

I’ve just finished three days at AMIA’s Annual Symposium – the geekfest gathering of informaticians (or informaticists, if you prefer).  It’s a big conference, with many themes and tracks, so it’s hard to draw general conclusions as any observations are largely functions of which sessions one chooses to attend.  So I’ll try not to generalize (too much) but offer a few thoughts on what I saw and heard.

Meaningful Use policy is a really delicate business.  As provider organizations are starting to translate Meaningful Use requirements into operational plans, the details are getting really tricky.  I saw a panel representing some real EHR pioneers (e.g. Intermountain Health Care, Marshfield Clinic) that showed how even for them, who’ve been using EHRs rather meaningfully for years, they will have to make substantial changes to their systems in order to qualify for the subsidies.  Meaningful Use is a great concept because it uses large scale EHR implementation as a vehicle to shift practice in the direction of better quality (good) and more prevention (good again), but doing so without being over-prescriptive is much harder than it looks.  Finding that balance of rewarding the principles while maintaining a fair degree of flexibility on the implementation details seems to be the key (and, to be fair, easier said than done).

Health IT raises interesting questions about roles.  Dan Masys, in his perennially fascinating review of the past year’s research findings and key developments, pointed out that now study after study about clinical decision support shows the same finding:  that decision alerts always have more impact if they are sent to anyone on the care team but the physician.  He also noted that the teachable moment of an order entry system is at the moment of entry (when, for example, a drug-drug interaction or contraindication alert is triggered) and that physicians don’t learn from these opportunities if they delegate the order entry task, as is common.  Dryly, he observed that studies also show that decision support is most effective when it’s not ignored.  On a serious note, he commented that if the trend of these findings continues, disintermediation of physicians will become inevitable.  Ouch.

Rapid Learning is really starting to happen.  I attended a terrific presentation by Nirav Shah, a researcher based at NYU and Geisinger.  He’s been mining Geisinger’s EHR data, which goes back many years now, and doing just the kind of studies one would hope to see when we can start to tap large clinical datasets.  After a preliminary rundown of the pros and cons of mining EHR data vs. running prospective clinical trials, he showed how he was able to compare the effectiveness (not a sanitized clinical trial of efficacy, but actual effectiveness in terms of real-world experience) of a next-generation brand-name drug against a generic (no difference except in cost).  He also showed that he could predict, in 50 percent of cases, which patients would develop congestive heart failure six to 24 months ahead of time.  Wow.  While it would be great to see the 50 percent number climb, that kind of result opens the door for preventive interventions that could save many lives.

Power to the Patients!  One panel brought together some of the true pioneers of patient engagement.  (Okay, I’m a bit biased as RWJF/Pioneer funds two of them currently) Warner Slack, who’s a great-grandmentor of some of the students in the audience (he trained the students that trained the current generation of faculty), gave a hilarious talk about just how strange his colleagues thought him when he was advocating for greater patient participation in clinical decisions 40 years ago.  Tom Delbanco discussed the OpenNotes project , and Patti Brennan discussed Project HealthDesign and the value of tracking observations of daily living (“ODLs,” also a frequent topic on this blog).  Patti gave a very clear explanation of the value of each: OpenNotes, she said, gives a window into what the clinician is thinking; ODLs give the clinician a window into the day-to-day life that a patient is living.  Both, she said, are necessary to improving care.  Charlie Safran made some important observations about the need to drop often stereotypic assumptions about how groups of patients will behave and e-Patient Dave was both passionate and entertaining as he spoke about the value of engaging patients in reviewing their records (not only will they be better informed, they will inevitably fins mistakes – some serious). Dave’s comments raised for me a key point, which is that clinicians should make sure that patients know what’s in their records – not for any moral or philosophical reasons – but for the simple practical reason that it can improve care and safety. 

Those were a few things I noticed.  You can check out the Twitter stream for many perspectives.   I’d love to hear from others who were there and get their take.  And for those who weren’t, are these observations consistent with what you’re seeing?

Introducing … DATA!

Next Wednesday at the IOM, HHS will do a big unveiling of its Community Health Data Initiative.  It will be a pretty big deal – HHS Secretary Kathleen Sebelius, White House CTO Aneesh Chopra and HHS CTO Todd Park will all be on hand and the expectation is that major tech companies will unveil prototype apps built off of some of the data sets that HHS will be making public.

The HHS/IOM event will be web cast, so check it out.  Either of these links should work:

1.    http://www.hhs.gov/open/
2.    http://videocast.nih.gov/summary.asp?live=9347

It’s an interesting headline when you step back and think about it.  HHS is making a major announcement – not about a new research breakthrough, a new vaccine, a new Medicare benefit or even a new grant opportunity.  It’s about **drumroll** … **drumroll** ... data!  Seriously.  The bet here is that the thousands (and I do mean thousands) of data sets that HHS maintains could actually support some useful applications – applications we can’t even imagine yet – in the same vein that the weather data produced by the National Weather Service generates so many services and businesses.  To some extent, these data have been available before, but they’ve been hard to get to.  The difference here is that HHS is planning to make access to the data easy and beyond that, make them available in ways that most lend themselves to application development.  It’s a conscious strategy to enable others to add value to these government data.

At RWJF, we’ve had a hand in one of the first major apps – the County Heath Rankings – which plots community health characteristics – for every county in America.  Go to the site and you can find both health outcome data, like premature death, and the social, behavioral and environmental factors that lead to those outcomes, like obesity, unemployment and air pollution.  And you can see how each county ranks on any of those factors compared to other counties in your state.  And the County Health Rankings data has even spawned an irreverent take on the data – the County Sin Rankings – winner of the Sunlight Labs Design for America contest for visualizing health data.  Check out the other contestants, who all offered imaginative ways to present health data to the public.  The point is that the government is not best suited to come up with creative ways to help people understand the health of their communities or the quality of the medical care they receive.  But creative designers, developers and activists, when given access to the data, can do it much better.  Once there’s a good platform, we always get happily surprised by the apps.

I’d love to hear what people think are the most exciting apps that get announced on Wednesday.  And while you’re at it, can you think of a more exciting name than “Community Heath Data Initiative?”

Project HealthDesign's Patti Brennan Emphasizes Value of Patient-Generated Data, ODLs at Meaningful Use Workgroup Hearing

Project HealthDesign’s national program director Patti Brennan testifies today at the HIT Policy Committee, Meaningful Use Workgroup’s hearing on patient and consumer engagement.  You can find Patti’s testimony here. 

Patti makes a key point that reflects Project HealthDesign’s current work: patient-generated data are not simply traditional clinical data (like blood pressure or glucose) collected by patients.  Instead, patient-generated data could include a whole host of observations about health behaviors, symptoms and environmental factors that are relevant to someone’s health.  As we’ve discussed over the past couple of years in various posts (see here or here), “observations of daily living” on diet, activity, sleep, pain, mood and others can help paint a clearer picture of one’s health and the factors that influence it and also drive an incredible variety of applications that give people valuable feedback.

Patti specifically offered the committee three things that she believes must be accomplished:

1. Health information that is selected and gathered by patients must be integrated into clinical care. The flow of information about an individual’s health should go both ways – not just from providers to patients – because patients are experts about their daily activities, and providers need their insights. 
2. Health information must be accessible to patients in a computable form. Project HealthDesign’s grantees and numerous private sector companies have been developing applications and services designed to let patients use health data in innovative ways, whether via PCs, mobile devices, online communities or other means.
3. Health information for patients must be actionable. Health information must be meaningful to patients as they make decisions about their own health care.

Project HealthDesign National Advisory Committee Chair Paul Tang co-chairs the Health IT Policy Committee Meaningful Use Workgroup; other speakers today included National Advisory Committee member M. Chris Gibbons of Johns Hopkins, first round grantee James Ralston of Group Health Research Institute, Dave deBronkart (better known as ePatient Dave), Eric Dishman of Intel and Scott Mackie of IDEO's health and wellness group. 

New Project HealthDesign Grantees Tackle ODL Challenges

Today, Pioneer and Project HealthDesign announced the five new grantee teams 
selected in the program’s second round of funding.  They’ll be breaking new ground in testing ways that patient-generated observations of daily living (ODLs) can be collected, integrated in clinical care processes and, ultimately, organized for action to drive smarter heath decisions by both patients and providers.  Congratulations to the grantees, who rose to the top of an applicant pool numbering nearly 150 with their innovative ideas and robust approaches:

• Carnegie Mellon University
• RTI International and Virginia Commonwealth University
• San Francisco State University
• University of California, Berkeley, in partnership with Healthy Communities Foundation and University of California, San Francisco
• University of California, Irvine and Charles Drew University
  

The teams will be working with patient populations that are managing two or more chronic conditions to collect and store various health observations that arise in the course of their day to day lives.  A later technical challenge will be to figure out best ways to share meaningful signals from these ODLs with providers and integrate that data in to clinical work flows.  National Program Director Patti Brennan writes more about this on the Project HealthDesign blog.

The patient groups are compelling, and you can see how making sense of ODLs and being able to act on them can have a tremendous outcome on their health.  Patients can use technologies like smartphones and biomonitors to harness information that better equips them to manage their conditions and make decisions that hopefully allow them to experience better outcomes, day in and day out.  Providers will get a far fuller picture of the way health plays out for their patients and be able to act on more meaningful information than that typically collected in a periodic office visit conversation. 

For example, parents of low birth weight babies will use a specially designed mobile device, "FitBaby," to record ODLs such as the baby’s temperament, exercise, feeding and sleeping schedules, as well as the caregivers’ stress levels and attitude swings. Providing nearly real-time data to clinicians will help alert them to early signs of health problems, which is crucial in treating low birth weight infants.  Another team will help young adults who suffer from Chron’s disease create visual narratives of their condition and treatment to provide concrete feedback to providers about how they feel from day to day. Patients will track ODLs of physical symptoms like diarrhea, bleeding, and profound weight loss, along with more complex social and emotional observations.

The path is not entirely clear, and lots of questions will be raised along the way.  Which is why the grantees will be sharing their learnings, experiences, road blocks, questions and successes along the way, largely via the Project HealthDesign blog and Web site.  We want their progress to be an open path along which you follow and help to guide.  We’ll be sharing updates and hope you’ll check in often as well.

Join Pioneer at TED 2010 – Health’s Future, Powered by You and Your Data

TED2010 – the Technology, Entertainment and Design conference – kicks off today and runs through the 13th in Long Beach, CA, with the Pioneer Portfolio resuming its role as an event sponsor.  There’s an amazing lineup of speakers, and we’re especially excited that two Pioneer grantees will take the main stage.  Nicholas Christakis of Harvard Medical School will be speaking on Thursday about the power of our social networks to influence the spread of health and social phenomena, including obesity, happiness and smoking cessation.  And Phil Howard, chair of Common Good and leading spokesperson for the work we have supported to test administrative health courts to overhaul our broken system of medical justice, will address the TED audience on Saturday.  

 

They’ll be among impressive company, joining speakers and performers including HIV vaccine researcher Seth Berkley, molecular technologist George Church, Bill Gates, musicians David Byrne and Sheryl Crow, behavioral economics founder Daniel Kahneman, game designer and Pioneer friend Jane McGonigal, chef Jamie Oliver and former CIA operative Valerie Plame Wilson, among many others. 

 

We’ll be leading two activities at TED – a luncheon on Thursday that will highlight the future of data-driven, patient-centered care.  We’re teeing up the following questions – in a world with abundant, accessible, actionable health data, how will our level of engagement in our health and health care change?  What expectations of doctors, nurses and other providers will we have, and what expectations will they have of us?  If we have and use our data – both those logged in our electronic medical records and those generated in the course of our everyday lives – how might our decisions change?  Behaviors?  Demands? 

 

It’s a fascinating conversation, and one that will feature Pioneer team director Paul Tarini as moderator WIRED executive editor Thomas Goetz and Beth Israel Deaconess primary care visionary and Open Notes grantee Tom Delbanco.  Thomas is releasing a book called The Decision Tree later this month that explores this new approach to health in which patients harness their data and use decision trees – essentially health-oriented flow charts – to engage more meaningfully in health decisions and manage their care more intentionally, leading ideally to better outcomes.  Tom will spotlight the role for providers to innovate in this space.  He’s leading the way in making health data for the patient – not just about the patient – by placing the information doctors enter in our medical records and clinical encounter notes,directly in our hands and revolutionizing our role in our health care.  We'll record the event and post it as a Podcast later in the week.
 
We’ll also be running an exhibit space all week, the centerpiece of which is a video drawn from interviews with a range of Pioneer staff, grantees and other experts on the leading edge of this data-driven, patient-centered vision.  A big shout out to our partners at DDB Issues and Advocacy, who turned hours of telephone interview transcipts in to a beautiful, dynamic and thought-provoking brief video that makes text – and these ideas – jump off the screen and challenge you.  I love this video and urge you to check it out and add your ideas and reactions on our YouTube page.

 

Pioneer will be live-tweeting from TED and we invite you to join us in the conversation on Twitter, where you can provide your answer to this: In a world rich with actionable health data, how will our relationship with doctors change?  Use the #pioneerdata hashtag and spread the conversation online.

 

Finally, we’ll be blogging the sights, sounds and stories of TED this week, so check back frequently.

 

More on the App Store for EHRs

For those of you interested in this idea – of electronic health records working as platforms that support substitutable applications (see earlier posts here and here ) – Ken Mandl and Zak Kohane convened a small working group to come up with principles for fostering the development of an “iPhone-like” platform for healthcare information technology.  Check it out and come back here for discussion.

Mix of things to check out

A bunch of things caught my eye today that may be of interest.  First, given that the Games for Health conference kicks off today and I have to sit it out this year, I was especially glad to see this article in the Syracuse Post-Standard.  It profiles one of our Health Games Research grantees, Cornell University, which has given middle-schoolers iPhones loaded with a game designed to encourage healthier eating choices.  The way they do it is pretty clever, though...the kids take care of their own virtual pet and snap photos of their food selections, which are sent to the Cornell research team.  When indicated, the virtual pet will prompt the kids to consider, say, trading in their chips for a yogurt next time.  It's more of a fun interaction than preaching, as the article points out, and it goes wherever the kids go.  I like that it shows how health is playing out apart from health care settings and encounters, and how games and game technologies may provide ways to deliver health messages to kids in ways that are so much more up their alley, and potentially so much more effective.

Second, Steve Downs and John Lumpkin blogged on June 1 on "Catalyzing an App Store for EHRs," which our friends at the Health Care Blog were kind enough to re-post.  A great conversation has kicked up around this - read the comments and add your own thoughts.

Finally, Project HealthDesign received 145 new proposals last week in response to its Round 2 CFP. National Program Director Patti Brennan talks about the breadth of ideas and wide range of observations of daily living that teams proposed - they'll be working together with patients managing multiple chronic diseases to capture and analyze health data generated in the course of daily life and test how it can be integrated in to clinical care workflows.

Catalyzing the app store for EHRs

Posted by Steve Downs and John Lumpkin, Senior Vice President, Health Care Group

Recently, Steve posted about the idea, floated by Ken Mandl and Zak Kohane, that EHRs (or health IT more broadly) could move to a model of competitive, substitutable applications running off a platform that would provide secure medical record storage.  In other words, the iPhone app model, but, for example, you could have an e-prescribing app that runs over an EHR instead of the Yelp restaurant review app on your iPhone.  We’re thinking about the provider side of the market here, as Google Health and Microsoft HealthVault are already doing this on the consumer side.

It’s nice to ponder these “what ifs,” but we’re a bit more action-oriented here and we’ve turned our attention to asking what it would take to make this happen.  It seems that there are two things that are needed. First, we need the platform.  Some of the most notable platforms started out as proprietary that were then opened up.  The IBM PC comes to mind as an example. Some were designed from the beginning to be open platforms with limited functionality until the market started developing applications.  A recent example is the development of iGoogle and the tons of applications that are available for free.  Finally, there was the purely public domain development from the beginning to end that we've seen in the Linux world.  Or perhaps we don’t need a common platform and maybe what is needed is to stimulate the market for health IT products that have open application programming interfaces (APIs) that allow for third-party application development?  Several ideas come to mind.

Sounds Good; How Do We Get There?

I just read Professor Pentland’s post here and have been learning a bit about what Dr. Richard Katz at George Washington University has been doing in the District of Columbia to use cell phones to assist patients in city clinics to monitor their diabetes. The new round of funding for Project Health Design, focusing on how information about patterns of everyday living can be collected and interpreted, can add to a field that helps empower people to better manage their health.

While all of this is exciting, frankly, I’m a bit frustrated that what seems so intuitively logical and necessary to improve health and health care has not evolved more rapidly. There are lots of independent researchers doing independent work, cell phone manufacturers seem engaged and some consumer-oriented businesses are selling product. But it doesn’t seem to me that a “field” is emerging. Part of the reason for this may be that the government has yet to acknowledge that this is field that is worth a major investment. The traditional structures at NIH are such that this field isn’t a natural “fit” and that there isn’t enough “evidence.” Of course, part of the reason there isn’t an evidence base is that funding for its development has been lacking. Private funders – corporate and philanthropic – tend to operate independently, making the development of an evidence base difficult.

We are at a point in time when there is unprecedented opportunity. Health reform and the economic stimulus funding can help make tremendous inroads here. The only question is how to align the need, the technology, the science and the funding. I’d like to hear how others think we can bring it all together.

Sandy Pentland on Reality Mining: Phoning In the Data

Professor Alex (Sandy) Pentland is the co-director of the Digital Life Consortium at the Massachusetts Institute of Technology and was co-founder of the Center for Future Health at the University of Rochester, which we write about often here on the blog. Pentland has a grant from Pioneer to explore the potential role of reality mining technology - a concept that he helped develop - in medicine and in public health.  We asked him to tell us about this work, and he responded: 

We live our lives in digital networks. We wake up in the morning, check our e-mail, make a quick phone call, commute to work, buy lunch. Many of these transactions leave digital breadcrumbs – tiny records of our daily experiences. Reality mining, which pulls together these crumbs using statistical analysis and machine learning methods, offers an increasingly comprehensive picture of our lives, both individually and collectively, with the potential of transforming our understanding of ourselves, our organizations, and our society in a fashion that was barely conceivable just a few years ago. It is for this reason that reality mining was recently identified by Technology Review as one of “10 emerging technologies that could change the world.”

As pointed out in a recent Nature article, the single most important source of reality mining data is the ubiquitous mobile phone. Every time a person uses a mobile phone, a few bits of information can be collected. The phone pings the nearest mobile-phone towers, revealing its location. Accelerometers already in some phones can record patterns of physical activity, and the phone’s signal processing hardware can analyze the user’s speaking patterns. With the aid of data-mining algorithms, these data could shed light on the user’s health behaviors, creating new ways of improving their health.

 

To illustrate, consider two examples of how reality mining may benefit individual health care. By taking advantage of special sensors in mobile phones, such as the microphone or the accelerometers built into newer devices like Apple’s iPhone, important diagnostic data can be captured. Commercial trials by start-up Cogito Health are demonstrating that we can accurately screen for depression from the way a person talks -- depressed people tend to speak more slowly, a change that speech analysis software on a phone might recognize more readily than friends or family do. Similarly, experiments in my laboratory have shown that monitoring a phone’s motion sensors can also reveal small changes in gait, which could be an early indicator of ailments such as Parkinson’s disease.

 

Perhaps the greatest potential of reality mining of mobile phone data is to create a personalized health system (as opposed to a heathcare system): a set of information tools that helps people thrive, staying healthy and happy during their entire lives. Such a system would be owned by the individuals themselves, not by hospitals or clinics.

 

Best Buy, CVS, and Wal-Mart are already queuing up to sell and service the tools such as these that allow people to manage their health. The vision is that is emerging is of a health system built around mobile phones with special sensing capabilities to record your daily and weekly patterns, smart bathrooms that keep track of new types of vital signs, smart exercise equipment that knows your personal patterns, and more…all provided by consumer electronics and similar industries. By building a health system that supports lifelong health, we can make sure our healthcare system is used in the most efficient way. And, even more importantly, we can help citizens of the United States of America achieve far more healthy, happy, and even thriving lives.

 

photo credit: Julien Pacaud. 

Overshoots and Apps: Disruptive Innovation and Health IT

As Paul Tarini just discussed, we had a thought-provoking discussion with Clayton Christensen about disruptive innovations and health IT.  One idea that interested me in particular was the potential for electronic health record (EHR) systems that are offered on the Software as a Service (SaaS) model to serve as a disruptive innovation.

Let me back up for a minute. Christensen talked about looking at the pre-conditions for disruptive innovations. One of them is when companies “overshoot” the market in terms of performance. For example, their product adds more and more features (each of which adds value to fewer and fewer customers) and becomes very expensive. They target the high-end of the market, where they make the highest margins, and as a result, they offer more than the lower end needs at a price that the lower end can’t afford. They’re “overshooting” that part of the market. This then creates opportunities for new entrants, with a new approach – that gives them a cost advantage – to make inroads at the low end of the market. The dynamic that follows is what ultimately transforms the market: the incumbent happily cedes the low end of the market because they make higher margins at the upper levels, giving the new entrant some traction. The new entrant then seeks the next rung up in the market, which the incumbent again, gladly cedes so they can focus on their most profitable customers, and so on, until Toyota, which started with cheap subcompacts in the 70s, introduces Lexus and starts taking on Mercedes.

So that got us thinking about the EHR marketplace and especially small practices.  A lot of people experience real cognitive dissonance when they think of a three-doc practice installing a traditional EHR where they install and maintain the hardware and software on site.  Systems designed for larger practices (with dedicated IT support) can be cost-prohibitive for small practices.  Sounds like overshoot to me.  Enter SaaS-based EHRs, which, by offering a very different technical and business model and (presumably) a real cost advantage, ought to be primed to take on the low end of the market, away from which the incumbents might happily walk.

What am I missing here?  Is anyone seeing signs of this happening?  Are there SaaS EHR vendors that look particularly promising?

The other key Christensen concept that came into the discussion is the idea Paul mentioned that customers have “jobs” to do, as opposed to systems they need.  In my mind, “job” relates quite directly to “app,” as in “there’s an app for that.”  (There I go quoting Apple ads again.)  This gets back to my earlier post on EHRs and apps, which I won’t rehash other than to say that adoption of EHRs would likely be enhanced if they offered the apps that help providers do the many jobs they need to get done and that the best way to ensure that is to open up app development to 3rd parties.

From Health 2.0: Re-Imagining the Doctor-Patient Relationship

Several themes and memes emerged from the Health 2.0/Information Therapy conference over the last several days. One theme is the need to re-imagine the relationship between patient and doctor in order to prepare for a Health 2.0 world. In the past, doctors were the primary, if not the only, source of health information. Doctors defined what was relevant to patients' health (e.g. blood pressure, blood tests, height and weight), and they were responsible for collecting it whenever the patient came to their office. In the Health 2.0 world, patients seek information that is relevant to them ("given the pollen count today, do I need to take an extra dose of my allergy medication?"). This new dynamic views patients as sources of health-relevant information, much of which is collected outside of the clinical setting. Patients are no longer passive subjects, but "info-mediaries," as some attendees called them, in their own right.

 

Paul Wallace of Kaiser Permanente  and the Center for Information Therapy and Jamie Heywood of PatientsLikeMe debated the question during the session entitled "What is the Future Role of the Doctor?". Certain ideas and phrases -- in other words, "memes" -- filtered throughout the discussion, shaping the participants' efforts to rethink the relationship between patient, doctor and data. In order to get their minds around what this new relationship might look like, the panelists and members of the audience employed a few metaphors. These analogies quickly morphed into memes, and conference attendees referred back to them to summarize and simplify their perspective on the future relationship between doctor and patient. Here's a sampling:

1. Football: The doctor is the quarterback. She is the leader of a team, calling the shots. Perhaps she gets direction from the care coordinator (the coach). Where is the patient in this model? The patient is the all-important ball -- the object of coordination among different health care providers as they move it up the field.

2. Banking: The health care system is the banking system. Patients can access and control their health data via an online health management portfolio. The portfolio includes myriad tools, geared to different types of patients. In this model, the doctor is like a financial planner - she helps patients navigate the system.

3. Organization: The patient is the CEO of her body, and her doctor is a hired consultant.

While similar in that they place increased importance on the patient, these metaphors also reveal very different visions for the future role of the doctor.

Reporting Live from Health 2.0

I arrived at the Health 2.0 Conference bright and early this morning. At the urging of this very tech-savvy community, I joined Twitter and issued my first-ever Tweet. (For complete coverage of the conference, check out the 600 + following at #heatlh2con). Next, I popped into the Health2.0 Accelerator pre-conference meeting, where (among other things), we learned about how the Accelerator and Project HealthDesign will collaborate going forward. Afterwards, I spent some time fielding questions about the next round of Project HealthDesign at our expo booth. All before the conference officially kicked off at 1:30pm!

The first session initiated the debate over whether Health 2.0 and Information Therapy (Ix) are in tension or in synergy. We heard from Don Kemper, CEO of Healthwise, that Health 2.0 and Ix are the yin and the yang of translating data into information, information into knowledge, and knowledge in to behavior change. Matthew Holt, founder of Health 2.0, countered that a “shared understanding is not necessarily enough to support a marriage between Health 2.0 and Ix.” Given the candid format and the diversity of the crowd here, we can expect more “great debates” to follow.

Check back for reflections on tomorrow’s sessions, including “The Future Role of the Doctor,” and “User-Generated content vs. Expert: What’s the best approach to Knowledge Creation?”

Posting from TED: the Raw or the Cooked?

In the afternoon session of Day 1 at TED, Tim Berners-Lee, credited as inventor of the World Wide Web, made a simple request, one he’s trying to build a movement around: put your data on the web.  In Berners-Lee’s view, data held in the hands of the few is a lost opportunity.  It’s like the complaint leveled against the researchers who held on to the Dead Sea Scrolls for so long and wouldn’t let other researchers work with them or analyze them…only we’re talking about digitized data, not papyrus-based data.

Putting data on the web in a format that allows linking would open it up to all manner of exploration and analysis.  “When you connect data together, you get power,” he said. This spirit is what’s behind our support of Rapid Learning, which is being championed by Lynn Etheridge.  Rapid Learning proposes to link patient data bases from various provider organizations for research purposes.  It’s also embedded in our support for ARCHeS, the effort to build a user interface for the Archimedes model that would enable more people to harness its power to answer questions.

Berners-Lee pushed the idea of putting data on the web to its limits, leading the audience in a chant of “Raw Data Now, Raw Data Now.”  For some people, looking at some kinds of data, the idea of just posting it on the web is disconcerting.  Assuming one takes proper steps to assure privacy and confidentiality, should all data be open for mining and analysis, or are there limits to what should be shared in its raw form?

Amplyifying how my body talks to me (and others)

It doesn’t take much insight to know that the current method of delivering (and paying for) health is broken and not sustainable. Making changes at the margins won’t work. Aside from current (and obvious) inefficiencies, we have a population that’s living longer, has more medical conditions and more methods for treating them. Even if you believe your personal health care support is doing OK, you have to know that there’s a crisis in the future. If you believe we’re already in a crisis, you know we’re heading for a catastrophe.

 

There is a school of thought that crises have a way of solving themselves. There’s a great story about how at the start of the 20th century, with the growth of the telephone, there was a fear that the number of switchboard operators needed for manual switching systems would soon exceed supply, and that the problem was solved (just in time) by the invention of automated switching systems. This story was repeated as recently as 1998 in a letter to the NY Times. Unfortunately, this story is not true. The first automatic switch was invented in 1889 by Almon B. Strowger who developed it because he believed the operator was deliberately routing calls to his competition. In fact, as late as 1920 Bell in Atlanta continued to use operators and only changed when there was an operator strike.

Recognizing, therefore, that most crises are not self-resolving, and at our request, the Center for Future Health at the University of Rochester convened a diverse group of thought leaders interested in real-time personalized health monitoring. They came to discuss how people might benefit from personalized self-care systems, how such systems might enable people to take more responsibility for their own health and what RWJF might do to advance the field. What we learned is that there are amazing things taking shape that hold the promise of technologies that are both useful (in terms of their ability to improve our health) and unobtrusive, that there are lots of single point experiments and that there are major obstacles to coherent development. The challenge remains finding activities that can be transformational in accelerating the field while avoiding, or at least mitigating, some of the costly dead ends.

Do you flu Yahoo!?

Google.org may have grabbed headlines last week with the announcement that search term activity on its engine may forecast real-life flu activity, but grantees Phil Polgreen and Forrest Nelson are releasing the first peer-reviewed journal article that documents this trend.  Together with partners at Yahoo! Research and Harvard, they published a study in Clinical Infectious Diseases that finds that frequency of Web searches on flu and influenza (excluding searches related to avian flu, vaccines and other outlier terms) predicted increases in cultures positive for influenza one to three weeks in advance.  Their study, and a quote from Phil, were cited in the New York Times cover story on the Google flu trends service.

Given the ultra-real-time nature of Web information, and the fact that 8 million people search for health information every day, it’s perhaps not surprising that this is a potentially rich avenue for exploring whether people’s hunt for information online signals their health concerns, experiences, conditions, behaviors, expectations and even outcomes.  This has sparked privacy concerns -- also not surprising.

Polgreen, Nelson and colleagues examined the relationship between influenza culture data and Yahoo! searches at the national level, breaking searches down in to 9 Census regions and tracking activity over time.  They reported a statistically significant relationship between intensity of flu-related queries and levels of flu cases and even deaths.  The methodology has some limitations due to the fact that data only go back four years and other reasons, but it’s another potentially valuable tool in public health professionals’ toolbox.  And given the reality that current CDC surveillance activities identify disease activity only as or after it occurs, any advance jump on an outbreak seems like a good thing. 

This is what drives Polgreen’s and Nelson’s other Pioneer-funded work to test the use of electronic prediction markets to forecast domestic and avian flu activity.  The premise being that more knowledge, gained more quickly, fuels wiser policy and resource allocation decisions, better prevention and treatment actions, and hopefully less incidence of disease with less harmful effects. 

Search term surveillance may yield trendspotting clues for public health officials fighting emerging and reemerging infectious diseases, changes in phenomena tied to chronic illnesses or trends in STD infections ahead of official reports of disease activity.  It’s fascinating to think of the potential that exists in mining aggregate data from the ways we digitally engage in the world in the course of our everyday lives, and how that collective information may be applied to improve public health and health care practices.  This is an area that Pioneer might explore more down the road – we’d like to hear what you think about this, and how it might be applied.

Live-blogging from Health 2.0 Conference

We weren't able to go to the Health 2.0 conference, which kicked off yesterday in San Francisco.  The agenda had some sessions that looked great, including ones on patient social networks, Health 2.0 platforms for patient-provider communication, how the field is moving ahead in Europe and Asia, and how the issues of privacy, confidentiality and security will shape consumer confidence in Health 2.0.

Luckily, Lygeia Ricciardi is blogging live from the event over at Project HealthDesign's blog.  Her first post is up and she'll be publishing a few more over the next day or two.

EHR Adoption - Waiting for the Magic

Without having read much of Arthur C. Clarke’s science fiction, I am still going to quote his Third Law of Prediction, which states that “any sufficiently advanced technology is indistinguishable from magic.”

There are many technological advances in medicine that would appear magical to the doctors from the last century. In the past, people suffered through highly invasive surgeries with grueling recoveries; now, surgeons can make tiny incisions and see their way inside and around the human body. Here’s a simpler example: I’ve worn glasses or contacts since the third grade, and my prescription got to the point where I was almost legally blind, yet last year, a laser operation that lasted just under a minute gave me 20/20 vision without any corrective lenses. Does that seem magical? Absolutely.

However, most of what we understand to be health care - care received by a patient in a multiplicity of settings and involving numerous transactions such as doctor visits and lab tests and hospital stays - has not yet been magically transformed by technology. Doctors and nurses still keep paper charts. Transferring medical records from one doctor to another is still a ginormous pain in the neck.

The Robert Wood Johnson Foundation is gearing up to release the second full report that examines where this country stands in terms of adopting health information technology. This second report, in particular, focuses on electronic health records, which are the most commonly understood example of health information technology, and are usually seen as information systems designed for the provider side—for the people who give the care.

So what are the headlines from the report? One, while it’s increasing, the rate of adoption is still snails-pace slow—4% overall when using the definition of a “fully functional” EHR, and 13% overall for a basic one. On the bright side, though, it seems that those who have adopted electronic health records like them. Physicians report that EHRs can help improve the quality of their clinical decision-making, helps them avoid making errors, and streamlines procedures like prescribing and communicating with other clinicians.

What, then, are the big stumbling blocks that are bogging down the rate of adoption?

Health 2.0: A Report on The Wisdom of Patients from CHCF

How is Web 2.0 technology affecting health care, and how might it shape its future? Health care economist and consultant Jane Sarasohn-Kahn distills a buzz of activity down to 24 pages of clarity for the California HealthCare Foundation: "The Wisdom of Patients: Health Care Meets Online Social Media."

Sarasohn-Kahn reviews the landscape of health-focused uses of social media and makes a few predictions for what might be next:

• Consumer ratings of physicians and providers. (Insurers and ratings groups are moving into this space, as it Zagat and Angie's List, notes Sarasohn-Kahn.)
• Networks where physicians and consumers can community peer to peer.
• Adoption of OpenSocial, a common set of standards for social media that allow users to move across social media sites without having to create a membership and load information at every single one.
• Disruptive innovations in health care brought about by new forms of collaboration.

In looking forward, Sarasohn-Kahn notes Carol.com may be an example of the "direct-to-consumer health care" of the future empowered by Health 2.0. Carol.com, a self-described health care marketplace based in Minnesota, allows users to investigate, compare price for and select health care in treatment bundles, whether or not you have insurance.

From Carol.com's Web site (a caution that the site is technologically lush and occasionally slow to load):

Carol, The Care Marketplace, allows Twin Cities' consumers to compare health care services, practitioner credentials, quality dimensions, and costs—with or without insurance. ...

Health care is sold in the Carol Marketplace in care packages—bundles of condition-specific services designed to treat everything from asthma to varicose veins. Care packages are created by clinical experts from each of the member institutions and include a range of traditional medical services that run the gamut from allergy evaluations to same-day surgeries. In the Web-based marketplace, consumers can compare diagnostic imaging packages such as MRI and CT scans, annual physical, dental and eye exams and the costs of physician-recommended services such as mammography or physical rehabilitation.

Read the whole report: The Wisdom of Patients: Health Care Meets Online Social Media.

Sarasohn-Kahn's own blog post on this report is here.

Are electronic health records the answer?

Part of our role in the Pioneer Portfolio is to keep an ear open for those who challenge the conventional wisdom – those who don’t jump on the bandwagon, but wonder openly about where it’s headed. So when Gordon Moore came to us a few years back, when there was so much excitement about the prospects for a nationwide health information network of interconnected electronic health records in every practice, and suggested that EHRs, as we knew them, missed the point, we listened. We gave Gordon a small grant to develop his ideas and the results are now posted – in the form of two white papers – on our site.

Gordon’s central concern is that the emphasis should not be placed on the documentation of information about a patient so that it can be retrieved later but rather on the workflow and transactions of care – the entry of orders and the follow up activities. He gives examples of how care can be diagrammed as a series of loops: a test is ordered, the patient then (one hopes) shows up for the test, the result is communicated to the physicians and the patient, and then follow-up action is planned and taken, as appropriate. He also notes that in his own experience, and the experience of a small practice he visited, documentation of notes in the EHR is resulting in added time. This theme is echoed in a recent viewpoint paper – “Promoting Electronic Health Record Adoption. Is it the Correct Focus?” – in the Journal of the American Medical Informatics Association by Donald Simborg. Simborg discusses the trade-off between speed and accuracy in documenting notes. The methods for achieving speed – notably using templates or copying and pasting from previous notes – raise questions of accuracy.

Moore’s and Simborg’s papers open up an interesting discussion, which I would argue is not simply about whether EHRs as a concept are valuable and desirable. After all EHRs are systems that involve many functions to a greater or lesser extent depending on the implementation. Instead, they suggest the importance of identifying priority functions that ought to be implemented within (or even outside of) EHRs. The Center for Information Technology Leadership's work has provided some important insights in this regard – their study on Ambulatory CPOE analyzed value by different levels of functionality and their research into IT and disease management (that we supported) showed that of all the IT interventions typically applied in diabetes management, disease registries had far and away the most value. Add to that Tom Frieden and Farzad Mostashari’s recent JAMA commentary, in which they argue that most EHRs are missing many of the functions necessary for quality preventive care, and we have the seeds of an important discussion.

"Project Runway" Meets Health Care

I had always assumed that shopping for Italian fashion was bad for me for any number of reasons...cruel combination of sticker shock and the fact that clothes in Italy seem to be sufficiently tight on me that they cut off blood flow to vital organs.  A recent post on WIRED's blog may lead me to think differently.

Smartex, an "e-textiles" company based outside of Pisa, is designing functional clothing that not only looks good but also captures key health data.  They've created a system called "WEALTHY," (for, "wearable health care system") that uses sensor-equipped textile interfaces to continuously monitor vital signs, wirelessly relay EKG and other data and contribute to intelligent decision-support systems for patients and caregivers.  Despite its built-in electrodes, temperature sensors and conductive leads, the company's tank top (shown here) feels completely normal and even looks halfway decent.

(...fortuitously, our wonderful blog coordinator, Kate Garrett, has temporarily relocated to Pisa this spring, and may be able to follow up with an investigative site visit to Smartex headquarters.)

I know at least several Project HealthDesign teams that have considered how biosensing fabrics and materials might help people track valuable health info. in the course of their daily lives and transmit that data to their PHRs, providers, etc. Or how introducing biosensors in to people's homes -- say, in mattresses to measure sleep patterns or whether a patient actually gets up on a given morning -- can supply valuable point-in-time and trend data that provides a richer, more useful picture of how a person managing a chronic disease is really doing.  The University of Rochester's Center for Future Health has done some leading work with smart bandage technology, as well as how to empower patients to better manage their health by building off of appliances and technologies already found in the home.

So it appears that, someday, "retail therapy" may pay off physically as well as emotionally. How broad are the potential applications, I wonder? And what might be the barriers to their widespread use?

Network-Centric Warfare and Health IT

After my laptop gave out on a long flight to San Diego last week, I caught up on some reading. Wired offered an intriguing article about the failure of network-centric warfare in Iraq. The article described the basic concepts underlying the Pentagon’s approach of network-centric warfare.

The central idea is that an IT-enabled, highly networked force, that can communicate instantly in a peer-to-peer fashion can have the information it needs, when it needs it, to make rapid decisions. Such a force – that can pinpoint targets with breathtaking accuracy and eliminate them with air strikes within minutes – could overwhelm much larger, less technologically advanced forces. The article provided examples: small Special Forces teams defeating Iraqi Army units outnumbering them by as much as 500:1, a decrease in the time from target identification to target elimination from 3 days in the first Gulf War to under 10 minutes in the current conflict.

But then it goes on to discuss how this strategy, while highly effective in overrunning Saddam’s army, was entirely inappropriate for the years of fighting the insurgency that followed. The fascinating insight from the article was that the network-centric strategy failed because it excluded the most important nodes, or sources of information, from the network: many of the US troops on the ground, local policemen, Iraqi army officers, and tribal leaders. The counter-insurgency strategy that has apparently had some success in Iraq involves much more of a low-tech, messy, patient, trust-building social network approach.

So now let’s consider health IT, where we hear discussions of a nationwide interoperable network of electronic health records that could give clinicians the information they need, when they need it, to make the right clinical decisions.

In the same way that network-centric warfare is remarkably good at killing the enemy (as opposed to persuading the enemy not to be an enemy), network-centric health care (as so often envisioned) might be remarkably good at caring for acute conditions, where relatively little independent patient compliance is required (e.g., show up for surgery, adhere to a short course of medications), but for the messy world of chronic disease – perhaps not so much. In the same sense that in Iraq the network didn’t benefit from its most important participants, one could argue that network-centric healthcare, by not more deeply engaging the patient, fails in the same sense.

Which brings me to the meeting to which I flew. The Markle Foundation convened about 100 people to talk about key health IT issues (see David Kibbe’s post at the Health 2.0 blog for an insightful report on the meeting). At the meeting, Jamie Heywood gave a presentation of his site, PatientsLikeMe, which pulls together data from patients with ALS, Parkinson’s, MS, and HIV/AIDS. They’re getting extensive self-reported data about how each disease is progressing in different people, the symptoms they’re experiencing, the medications and treatments that people are taking, and the effects that they’re having.

Their numbers have grown to the point that they have more participants than most clinical trials on any of these diseases and they offer patients a very different body of information about their disease than what they’ll find in the literature. It’s the street intelligence: the day-to-day understanding of what’s really going on at the ground level in the war (in this case) against certain chronic diseases.

So to me, the parallel is striking: just as it is now with some hindsight that one can understand the flaws of the network-centric warfare strategy in Iraq, it would seem that a network-centric health system needs to move sooner rather than later to figure out how to incorporate the vital information assets that each person brings to the network.

A Broad Vision of Health 2.0 at The Health Care Blog

Over at The Health Care Blog, Brian Klepper and Jane Sarasohn-Kahn have outlined a broad vision for Health 2.0. Their description includes a diagram of the potential flow of information among providers, insurers, public reporting mechanisms and clinical decision-making tools that could be enabled by a Health 2.0 system. As they say:

"We thought it might be useful to try to develop an image of how Health 2.0 MIGHT develop: what its working parts were, what kinds of information it would receive and generate, who its users would be and what its impacts might be. The image that has resulted is simplistic; it doesn't try to explore any of the underlying mechanisms necessary to pull this off. But it does try to convey a vision of how innovators might come together to aggregate and reformulate large data sets from disparate sources to create tremendous new utility in the marketplace for patients, clinicians and purchasers of all types."

They've asked for comments and questions, and the discussion has been lively and productive: how long before such a vision may come to pass? Will it be this institution-focused? How might this change or fit into existing efforts? How might such a system improve quality?

Steve Downs wrote in to encourage an expanded view of patient-reported data:

"One idea I’d like to add is that we think about user generated content in an even broader way to contemplate users contributing actual data on routine health-related activities. For example, how much do we really know about what meds people actually take? Or how many calories they burn?"

In his comment, Steve pointed to an earlier post on Pioneering Ideas discussing the role of patient-reported data in a health record as "the tip of the iceberg."

Please check out the Health Care Blog discussion and Steve's original post of the role of PHRs in the electronic medical record. What are your thoughts about this vision overall and the role of personal health records in this view?

Health 2.0: The Doctor is Not Ready to See You Yet

After the Health 2.0 conference in San Francisco, one question remains in my mind: How (or when) will the health care system begin to integrate Health 2.0 into daily medical care, supporting collaboration and communication between providers and patients?

Overall, conference attendees were bullish on Health 2.0’s impact. In an instant poll at the end of the day, about 70 percent felt social Web tools would be adopted within the mainstream of health care in the next few years. (Insurers will continue to lead the way here, I bet, as we saw demonstrations of insurers’ use of social media in San Francisco.) But the doctor’s office may be the last mile for Health 2.0, because, to me, Health 1.0 hasn’t quite made the inroads we once hoped for.

When the first round of Web content and technology startups knocked on the door of the medical center where I worked in the 1990s, my first impulse was to hurry up and get moving. Would Internet time (lightning speed) overtake health care time (deliberate as always)? In most instances, it did not. With the exception of wifi in some waiting rooms and possibly some online tools at the periphery (renew a prescription, pre-register for a procedure), remarkably little has changed in doctor-patient interaction over the past dozen years as a result of the Internet.

Take one hot-button example: provider-patient e-mail. At Kaiser Permanente, provider-patient e-mail is improving communications, reducing office visits and phone calls and providing greater convenience to providers and patients alike. But Kaiser’s usage is nearly unique (in part because Kaiser itself is unique), and this experience is not a daily part of most patients’ lives, or physicians’ practices.

Although 80 percent of patients would like to e-mail their providers, according to a Harris survey, just 8 percent of them (or their families) have done so. And a Center for Studying Health System Change data bulletin from 2006 indicates that just one in four physicians uses e-mail for clinical communications.

This practice is limited for a number of reasons: is this communication sufficiently private? is it the best way to communicate with patients in many circumstances? does e-mail make its way into the patient’s chart? and who pays for this type of interaction, anyway? But it indicates that change will happen in this sphere deliberately and not at lightning speed.

To be fair, Health 1.0 has empowered patients in other ways: certainly, the provider-patient relationship is still changing now that patients, armed by online health information, arrive at the office demanding a more collaborative relationship with their provider. Read Scott Shreeve's post on the physician as advisor to get a better feel for this trend's potential. (In addition, some patients do benefit from online condition trackers that share information with their providers and facilitate online communication. Nevertheless, these tools are far from ubiquitous.)

If the experience of the last 10 years of the Web is a guide, technology will not change entrenched patterns at the doctor’s office by itself. For Health 2.0 to travel the last mile into daily medical care, other factors will likely need to support it, such as changes in the practice environment, changes in the technology habits of providers or possibly, as David Brailer suggested, the Facebook generation’s graduation from medical and nursing schools.

What do you think? Will Health 2.0 make it to medical practice sooner than I say? Has the first wave of Internet information transformed practice in greater ways than I give it credit for?

What if Brazil's Technology Goal Happened Here?

The second session at the Emerging Technologies Conference at MIT that I wanted to discuss here was the keynote address by Brazil’s Minister of Culture, Gilberto Gil Moreira. He spoke about the work he is doing in Brazil using digital media and other technologies to strengthen and influence culture. For example, he has teamed up with One Laptop per Child and is piloting how to use this technology with 400 children in Brazil.

In his presentation, Minister Moreira described his goal of Brazil’s having free digital technology able to be used by all in all communities, regardless of socioeconomic status.

This got me thinking: what if this same scenario happened in the U.S.? What would that mean for access to information and connectivity? With this type of connectivity, how does that transform health and health care? Your thoughts?

Emerging Technologies: Mixing Maps and the Metaverse

From Tuesday through Thursday this week I've been at the Emerging Technologies Conference at MIT. The entire conference was live on Veodia, a Web site that supports broadcasting user-generated live content on the web, and even better, on your own personal blog.

The option to broadcast live on Veodia, was just one of the technologies presented and discussed.  A couple of these really caught my interest; I'll discuss one here and the other in my next post.

The first session: Second Earth: Virtual Worlds, Amazing Maps, and the Future of the Metaverse, explored how virtual worlds and mapping tools are starting to overlap. The idea that we could link mapping tools, like Google Earth and Google Maps, to interactive virtual worlds like Second Life, leads to all sorts of scenarios.

One presenter asked what might happen if the entire world's geography were made accessible in a video game format or game-like space like Second Life. One's avatar could use real data to explore cities with such authentic detail that the line between virtual and real would fade to the point of invisibility. Difficult to bend your mind around: imagine, with this type of tool you could easily determine how walkable your neighborhood is compared to others. You could also experiment with how to make your city more conducive to physical activity.

Another possibility was overlaying Twitter (What are you doing right now?) with Google Maps. That is a map I would like to see! And it offers some interesting potential health applications.  Maybe we could use this mash-up to ask people health questions through Twitter: "What is the major health issue you are dealing with today?" or, "Where are you and what food sources are around you right now?"

Would this work, do you think, would we get useful information?  What other ways could this scenario play out?

Unraveling the Health Care Hairball: A Health 2.0 Conference Recap

I've heard the state of health care described in many compelling yet disheartening ways: broken, expensive, inconsistent, complicated. But today I like this one best: health care is a hairball.

Although Google suggests others coined the phrase before last Thursday, I credit Wayne Gattinella, CEO of WebMD, for introducing it to me and many of the 500 others attending Health 2.0: User-Generated Healthcare in San Francisco last Thursday. For all of us who hope the tools of the social Web might play a role in untangling health care's many problems, now we know what we're up against.

Health 2.0 was the brainchild of Matthew Holt of The Health Care Blog and Indu Subaiya, MD of Etude Scientific, and they delivered a conference with many thought-provoking product demonstrations (and yes, a product launch or two) and much food for thought.

Many bloggers covered the play-by-play better than I can, and I will mention a few, as well as posts by participants, after the jump. If I missed any, please e-mail me at eculbertson (at) rwjf (dot) org so I can add them. But here are a few of my observations and questions about how health 2.0 might affect patients and consumers:

Blog Coverage for Rapid Learning Conference

Pioneer, along with Kaiser Permanente and the Agency for Healthcare Research and Quality, has sponsored a special issue of Health Affairs on Rapid Learning, as well as a conference on the topic on Friday, January 26, the day the issue was released.  The conference and the special issue are generating interest among blogs, including Information Therapy...and Other Ways to Change the World, DCMATalk, and Australian Health Information Technology.

Guest Blogger: Rey Ramsey

Rey Ramsey is the CEO of One Economy Corporation, which recently received a grant from RWJF's Pioneer portfolio to explore the wide-scale application of tools to enable people to manage their own health in Washington, DC.  We asked Rey to write about this project for us, and he responded:

"Without a doubt, there is a health crisis in Washington, DC. When compared with residents of the 50 states, Washingtonians have the highest cancer death, infant mortality, and AIDS rates. Far too many low-income residents have poor health outcomes because of barriers such as lack of healthcare, health literacy problems and economic constraints. Currently, the DC government is pursuing the creation of a wireless Internet network through much of the city with free access for low-income residents. The availability of useful, patient-centered online content and applications is essential for the network to be truly beneficial for the health of Washington’s low-income residents. With the grant we received from the Robert Wood Johnson Foundation, One Economy is creating a resource to demystify healthcare for Washingtonians. This online resource will offer personalized and localized content as well as interactive applications that utilize state-of-the-art disease monitoring tools. Our ultimate challenge is to not only develop this product, but to also build awareness of the benefits this resource has to offer. To that end, we will engage in a comprehensive outreach campaign that will involve health clinics, community organizations, and public officials. We are now at the beginning of our journey to fulfill these goals, but I look forward to sharing more with you as we move forward."

Thoughts for Rey and his colleagues as this project begins?

In Other Blogs: Connecting Americans to Their Health Care

The recent RWJF and Markle Foundation-sponsored conference is generating activity on a number of blogs.   The Care Talk Gals discuss getting the conference's information to consumers here.   Much attention is also being paid to Adam Bosworth of Google's keynote speech.  See his own blog for a link to the speech itself, and visit summary news sites such as this one and commentators like Rough Type for reactions.