Pioneering Ideas

#GFH12 Update: Health Games Research Database Adds Powerful Online Search Features

BY DEBRA LIEBERMAN, PHD, DIRECTOR OF THE HEALTH GAMES RESEARCH NATIONAL PROGRAM — @GamesResearch  @DebLieberman

Each year at the Games for Health Conference, I am excited to see how the field continues to grow.  An important way our Robert Wood Johnson Foundation national program, Health Games Research, helps move the field forward is to ensure that our colleagues – game developers, health care providers, researchers, funding agencies, investors, policy-makers, parents, educators, and more – have access to the information and resources they need.  

We are pleased to announce at this year’s conference that our Health Games Research online searchable database has been updated with new search and save features that make it easier to use and a more powerful search tool.  The Health Games Research Database is the largest publicly available repository of information about health games, with extensive information about games, publications, resources, organizations, and events.

The database has received positive reviews.  Adam Dole, business planning manager at the Mayo Clinic, has noted that the database is “my go-to source for cutting-edge clinical trials and related resources.”  Dan Baden, MD, a public health expert who is a senior liaison at the Centers for Disease Control and Prevention, said, “You have collected a wealth of information here that people have been wanting for a long time.  It is easy to use and through the search mechanism I was able to find things I had no idea existed.”

With the database’s new features, users can search by keyword, category, or topic.  The database extends each search by recommending related items that may be of interest.  Furthermore, if users log in, they can save and retrieve their search results on “My Dashboard,” which provides access to items that are “New to You” since the last time they logged into the database, items they previously flagged as “Favorites,” and items in their “Saved Searches,” including their original search results plus new relevant content.

I encourage you to explore the Health Games Research Database on our website.  Here’s a preview:  a keyword search for “obesity” yields 22 games, 52 publications, and 18 organizations.  The keyword “rehabilitation” yields seven games, 58 publications, and 21 organizations.  Similarly, there are 12 games about “smoking cessation,” 21 about “autism,” 30 about “safety,” 82 about “nutrition,” and 117 about “fitness.” 

We update the database continuously and we have a queue of items almost ready to upload.  We welcome your input, so please add to the queue!  If you know of a game, publication, resource, organization, or event that is related to health games and is not in the database, please submit it through the Recommendation Form.  You can also use the same form to give feedback about the database, provide additional information about an item, or correct any inaccurate information. 

The Health Games Research Database represents the dedicated work of our colleagues and students at University of California Santa Barbara.  I especially want to thank the deputy director of Health Games Research, Erica Biely, who has been an outstanding and deeply committed database project manager, bringing her tremendous skills, ideas, creativity, and leadership to this project.  Thank you, Erica!

Erica and I look forward to seeing colleagues at the Games for Health Conference June 12-14, 2012.  I will give a talk about the research findings of several of our 21 Health Games Research grantees and another about research on games for managing chronic conditions.  You can follow Health Games Research at @GamesResearch and see updates from the conference at #gfh12.

Gaming the Field

BEN SAWYER, CO-FOUNDER, DIGITALMILL AND THE GAMES FOR HEALTH PROJECT -- @bensawyer

Today starts the eighth annual Games for Health Conference - a big week for those in the health games field. For three days (June 12-14) game designers and developers, researchers, medical professionals, educators, entrepreneurs, and policy-makers will come together in Boston, Mass., to discuss and share information about the impact games and game technologies can have on health and health care.

Founded in 2004 with support from the Robert Wood Johnson Foundation’s Pioneer Portfolio, the Games for Health Project exists to make large breakthroughs. Initially that just meant increasing belief in the notion that games could result in healthy outcomes. We tried to build a greater sense that games could improve health, and then integrate others into the fold, resulting in the emergence of new work in this field. With this in mind, I thought I’d take a moment to look back on how far we’ve come in the past few years and reflect on where we need to go.

Health Games for Everyone

Throughout 2010 and 2011 we looked at new ideas in the games for health space with the potential for large-scale impact. We looked at what existed, what worked and what didn't, and discussed building a model for where health games might be headed. This work included a number of conversations with experts and many interesting health conferences like TEDMED, Connected Health Symposium, Mayo’s Transform event, and more.

Four key thoughts that emerged from this research were:

1. The games for health space had several successes, but barely any that experienced both commercial success and large-scale health impact.
2. A new strategy had to anticipate where personal health trends and health care are headed and need to head versus where they are today.
3. We needed a strategy that optimized the consumer orientation of commercial game success while also focusing on health without being specific to a particular disease state or specific patient population-state model.
4. Thinking about commercial games and who was playing them, we realized these days it’s nearly everyone, and those that weren’t playing soon would.

Today, games for health as a field and practice is accepted. The past eight years of the Games for Health Conference have shown its attendees and the public that games can play an effective role in improving individual health. That doesn't mean the work is done; more proofs and larger successes are needed. What seems missing in this ascendancy, besides success at scale, is a larger idea about how we build a new form of public health that includes a meaningful role for games we can all rally around.

These ideas and more will be discussed at this year’s Games for Health Conference, and I encourage you to register and attend. Participants will hear from experts such as Constance Steinkuehler Squire, senior policy analyst for the White House Office of Science and Technology Policy, who will discuss the opportunities for videogames to address national challenges, and Bill Crounse, senior director of worldwide health for Microsoft, who will explore how Microsoft and its partners are merging its information and game technologies to create global solutions for personal health and professional health care.

We think there is grand opportunity still largely unrealized in the development of positive health assets, generated through meaningful gameplay, by millions of players across dozens, even hundreds, of games that strengthen individuals and those around them. This is where we want to head next with the power of all we’ve learned over the past eight years.

We Want to Know Your Thoughts About the TEDMED Great Challenges

BY BRIAN C. QUINN, PHD, team director and senior program officer, Pioneer Portfolio -- @quinnhealth

At the Robert Wood Johnson Foundation (RWJF), our mission is to improve the health and health care of all Americans. Good health and health care are fundamental measures of our success as a nation. That’s why we are pleased to support this year’s TEDMED conference (April 10-13), which brings together leaders from a wide array of medical and non-medical disciplines to explore the future of health and medicine.

In our 40 years, RWJF has learned several lessons that led us to support this year’s TEDMED conference. We’ve learned the importance of working with partners and building on the efforts of others; facilitating collaboration among unlikely allies; resisting the illusion of complete understanding; and being persistent.

For the past several years, RWJF’s Pioneer Portfolio supported the conference because it provided an opportunity to explore emerging trends and network with health care leaders driving innovative solutions to help solve health challenges. Now that the conference has pivoted to focus on Great Challenges in health and health care – issues that cut across the entire Foundation – support for TEDMED in 2012 has become a Foundation-wide endeavor.

This year, RWJF is partnering with TEDMED to help ensure all voices are heard.  TEDMED will present a set of 50 Great Challenges to the TEDMED community that will be narrowed to the most pressing 20. TEDMED selected knowledgeable individuals to serve as “Advocates” for each of the proposed Challenges. The Advocates will circulate among conference attendees – engaging their input around the importance of their individual Challenge and lobbying attendees to include it among their top 20. The Challenges range from childhood obesity to Alzheimer’s, from stress to superbugs, and are deeply rooted problems in health and medicine with multiple, interconnected causes and pathways to solutions.

Each of us could have developed our own list of 50 Great Challenges and no two lists would be identical. However, TEDMED’s proposed challenges are worthy of our attention. The dialogue will produce more engagement, new ideas, and new thinking. And if issues are missing, those attending TEDMED, as well as those participating remotely at partner sites, can add their voices to the discussion. There will also be opportunities to suggest Challenges for future years.

We want to make sure as many as possible can participate in the exchange of ideas and the voting process. To help facilitate the dialogue, RWJF will be gathering TEDMED’s 50 Advocates in the RWJF social space to meet and discuss the 50 Challenges. We invite you to join us. So, whether you’re attending the conference or participating remotely, here's how you, too, can join the conversation:

• If you’re at TEDMED, stop by the RWJF social space, where the 50 Challenge Advocates will be during the conference’s Social Breaks on Wednesday and Thursday (check the program for specific times for each Advocate).
• If you’re unable to connect with Advocates in person, use these online tools:
  • Download the TEDMED Connect app (free download available in the iTunes and Android app store, and can be viewed as a mobile website). The app will allow you to connect directly with any Advocate and to get up-to-date conference information.
  • E-mail Advocates at GCAdvocates@TEDMED.com with your thoughts and ideas.
  • Follow the conversation on Twitter: #TEDMEDChallenges
  • Follow the RWJF team on Twitter: @rwjf, @rwjf_vp, @PaulTarini, @RisaLavizzo, @babydoc44, @jisaacslowe, @annefweiss, @katiewehr, @pioneerrwjf

In addition to our activities around the Great Challenges, on Wednesday, April 11, during the session that begins at 8:45 a.m., RWJF President & CEO Risa Lavizzo-Mourey will be live on the TEDMED stage to speak about the Foundation’s experience in tackling big challenges in health and health care over the past 40 years.

All of us have the unique opportunity to shape the future of TEDMED. This is the start of a great conversation. I look forward to hearing your thoughts.

Gaining Perspectives on mHealth

In my recent blog post summarizing December’s mHealth Summit, I began by saying that the mHealth organizers must have been pleased with the conference, given its growth in attendance and engagement.

We were equally pleased with RWJF and Pioneer’s presence at the meeting – in fact, I’d say the meeting was a resounding success from our perspective.

Pioneer grantees Ben Sawyer and Debra Lieberman were both on panels featuring their work in health games and mobile technology. Deborah Estrin and Ida Sim announced the launch of Open mHealth, which is supported with funding from RWJF’s Pioneer Portfolio. And a session focused on this summer's mHealth Evidence meeting that was conceived of and co-sponsored by Pioneer.

Our Public Health Portfolio was also there looking for interesting perspectives on how mHealth could be deployed by public health departments to address a variety of health issues.

And finally, I was lucky enough to moderate a special session on a topic of keen interest to me and the portfolio.

“What I Really Need from mHealth: Five Perspectives on Value” featured a great cast of panelists including Robert Jarrin, senior director of Government Affairs for Qualcomm; Carol McCall, chief strategy officer at GNS Healthcare; Anmol Madan, founder of Ginger.io and visiting researcher at MIT Media Lab; and Richard Katz, director of cardiology at George Washington University Hospital.

Our session was structured around an imaginary mobile health application. The panelists discussed the value  of the application and how to demonstrate that value from the point of view of the individual, provider, various payers, regulators and researchers. This generated a fascinating conversation in which participants spoke from both a professional and personal perspective. Toward the end, we opened the discussion up to the attendees, which led to an informative and engaging discussion that will hopefully extend far beyond the session. The various perspectives are not completely aligned but yield something quite important when they do come together.

But wait, as they say on TV, there’s more! In addition to our panelists, we brought together about a dozen thought leaders, including representatives from organizations like NIH, Google, GNS Healthcare and the National Science Foundation, for a series of lively discussions about the future of mHealth and how to build value for all the players in the ecosystem. There was no lack of good ideas or strongly held opinions, and more questions were raised than answers offered. However, at the end of the night, we could all see light at the end of the tunnel. And that light came from a greater understanding of the value others saw in mHealth. From this newly fashioned broader vision, I’m hopeful we all left with a better sense of the way forward and with new ideas on how we could each play a role. 

I look forward to sharing more of what we learned and what this might mean for our investments in mHealth moving forward – and hearing your thoughts as well.

Reflections from mHealth Summit 2011

I'm sure that the organizers of this year's mHealth Summit were more than pleased. There were more than 3,600 people in attendance, up 1,200 from last year. The exhibit floor was larger and more complex, rivaling some trade shows. There were tracks for business, research, policy and technology along with a slew of special sessions and keynotes from Secretary of Health & Human Services Kathleen Sebelius and Surgeon General Regina Benjamin, among others. Some presentations soared with whiz-bang demos and promises of how technology will change the world; others bemoaned the complexity of interoperability, the "silo-ization" and the lack of demonstrated value.

While there is no question that mHealth is on the rise, some, including myself, are wondering if we’re heading toward a bubble of inflated expectations. As with all bubbles—dot com, housing etc.—the question isn’t whether there is significant underlying value (there is), but instead “how do we invest in the value that can be realized without buying into overinflated hype?” In the context of the ‘90s’ dot-com bubble, “How do we place our bets on Google and not on pets.com?”

The answer isn’t going to be found in the next jazzy consumer-oriented gadget, but by connecting great ideas that will help us lead happier, healthier lives over the long haul – connecting business, research, technology, and policy interests to find shared value.

I came away from the 2011 mHealth Summit optimistic in the overall potential of mHealth, but a little skeptical about the direction it seems to be heading in. Introducing multiple new and evolving health innovations is inherently complex, as is the perversity of our current health infrastructure. Yet one can’t help but notice that there are some very smart people working on developing the promise mHealth can offer to address some of our most pressing health challenges.

A central question will be how willing those from the “m” will be to ensure that the “health” is improved? And how open will the folks from “health” be in fulfilling the promise of “m” technology?

This will require us all to see value from others’ perspectives in this growing ecosystem. I’ll explore this more in my next blog post, so stay tuned.

In the meantime, take a moment to peruse RWJF’s coverage of the Summit on NewPublic Health.org, which tapped into some of the conversations, new collaborations and innovations in mobile health that might feasibly be applied to public health, and started a conversation about the potential for mobile technologies to help the public health field connect with hard-to-reach populations and bridge disparities.  Read what they learned in interviews with Susannah Fox of the Pew Internet and American Life Project about advances in mHealth, with Yvonne Hunt of the National Cancer Institute about the potential for mHealth in public health, and with Robert Kaplan, director of the Office of Behavioral and Social Sciences at the National Institutes of Health about the rigorous research still needed to support the field. We’d love to know what you think, so don’t forget to comment on each post or below to share your insights.

What Do We Really Need from mHealth?

The December 5-7 mHealth Summit is approaching and I’m pleased and excited to be moderating the special session: What I Really Need from mHealth: Five Perspectives on Value.

Pioneer has been involved with multiple aspects of mHealth since very early on and has seen interest grow into what sometimes seems to me to be an “irrational exuberance,” to borrow a phrase from Alan Greenspan. I’m concerned that we’re on the way to another bubble that’s in danger of bursting with unfortunate consequences. The fact is we often don’t know what “works,” and even what “working” means. And that’s why it’s so important that we discuss the different ways value needs to be demonstrated in mHealth.

This mHealth Summit panel will talk about value from the perspectives of the individual, the provider, the payer, the regulator and the researcher. These can be different, but from time to time they converge. Rather than having a number of separate presentations, experts will engage in discussion around a hypothetic but realistic scenario of a mobile health device and what’s needed to provide enough “value” for each to adopt, approve, purchase, share, fund and embrace this as a tool for better health. It is sure to be a lively and informative discussion.

I hope that you’ll be able to join us either in person in Washington, D.C. or electronically to help us shape the dialogue.

Follow the conference discussion through #mHS11, leave a comment below, or follow me on Twitter to join in the conversation.

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

Converging Ideas at the 2011 mHealth Summit

Sometimes things just come together. We funded the first mHealth Summit because it was interesting and pioneering, and it seemed to have a connection to a few of our Project HealthDesign grants. Then came our involvement with and support of Quantified Self, Open mHealth, the Stanford Mobile Health 2011 conference and the mHealth Evidence meeting. Other programs, like our national program Health Games Research, Games for Health Conference and the Reality Mining meeting that we funded at MIT in 2009, also have strong mHealth associations.

This is more than just coincidence--rather, mHealth focuses on many of the qualities that make Pioneer “pioneering.” mHealth has the potential to radically change the way health and health care is delivered, it is inherently oriented to the individual, and it is an area not yet burdened with the organizational and bureaucratic complexities of traditional health care. mHealth is a place where something radical can happen.

It is therefore particularly gratifying to see that Pioneer will be well-represented at the 2011 mHealth Summit on December 5-7 in Washington, D.C., with grantees featured in sessions on Open mHealth, The Evolution of Gaming and its Effect on Prevention and Wellness, and Wireless Patient Monitoring in Care Facilities: The Future of Wearable mHealth Applications, Devices, and Sensors, and with a  Pioneer-sponsored session, What I Really Need from mHealth: Five Perspectives on Value. This session builds on a discussion that began in August at a Pioneer co-sponsored workshop on mHealth Evidence.

I hope that you’ll be able to join us at the conference, tweet me at @alshar using #mHS11,  and help frame what I’m sure will be a very important discussion.

Exploring What We Don’t Know at TEDMED 2011



Pioneer is proud to once again sponsor TEDMED, which brings together innovative thinkers and leaders across the fields of medicine, science, business and technology. Traditionally, when people attend TEDMED, they come looking for ideas and inspiration. This year from October 25-28, the Pioneer team will be looking at things from a different perspective: What don't we know about some of the greatest challenges facing health and health care.

TEDMED has identified a tentative set of Twenty Great Challenges of Health and Medicine—deeply rooted problems with multiple, interconnected causes and ripple effects—which they plan to include as part of their 2012 conference. We’ve offered to help TEDMED examine these issues and we believe a good first step is to take a step back and ask: What don’t we know about these problems? What relationships aren’t we seeing?

To do this, we’ll be engaging all 600 conference attendees to get their thoughts on “what don’t we know” about these 20 challenges. Looking closely at what we don't know will help create a big-picture understanding of these challenges—a crucial step to developing truly effective solutions.

We invite you to join us in this exploration. Take a look at TEDMED’s Twenty Great Challenges of Health and Medicine. Then, answer the question, "What don’t we know?" about any of these challenges by tweeting #TEDMEDchallenges, posting a comment below, or e-mailing us at pioneerblog@rwjf.org.

Afterwards, we’ll be compiling what we heard at the conference and what you’ve told us to help TEDMED shape their new Great Challenges Program. Your input is valuable and will directly inform what is done at the TEDMED 2012 conference. We’ll share what we’ve learned in future posts.

How can you share your ideas?

• Tweet #TEDMEDchallenges to tell us what don’t we know about TEDMED’s Twenty Great Challenges of Health and Medicine. Tweet about any or all of the issues. 
• Post a comment below. 
• Follow @pioneerrwjf and #TEDMEDchallenges to see what others are saying.

Be sure to check back throughout the week and next for updates from our guests and team members.

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!

 

 

Patricia Flatley Brennan Discusses Project HealthDesign at TEDMED

We had the good fortune of catching-up with Project HealthDesign Director Patricia Flatley Brennan while at TEDMED this year. In this video Q&A, Patti discusses how Project HealthDesign is redefining the way we fundamentally perceive Personal Health Records (PHRs), away from a repository for health information and towards a “platform for action.” This includes enabling patients to track their “Observations of Daily Living” (ODLs) to better understand the state of their health and create an impetus to action.

Check out our interview with Patti and let us know your thoughts on ODLs and the work Project HealthDesign is doing.

 

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?

Time to Accelerate Innovation: Takeaways from this Year's mHealth Summit

I just returned from the mHealth Summit in Washington, D.C. We’ve been sponsors of the event for 2009 and 2010 – both years it’s been held. Last year there were about 400 people who attended. This year there were about 2,500, including prominent guest speakers like Francis Collins, Bill Gates and Aneesh Chopra, among others. There was also a large hall with lots of exhibitors and an extensive poster session. I guess this means that means mobile health is coming of age.

I liked it a lot, but not for the reason you might think. At most of these types of events the presentations tend to expand on the great things that are going on in the field. Here there was a good, healthy dose of skepticism. And there’s a lot to be skeptical about. There are the “show me” skeptics, the ones that ask for evidence that it actually works. There are the regulation skeptics, the ones who know the problems in getting devices approved by the responsible government agencies. There are the “disruptive innovation won’t work here” skeptics. There are the “who will pay for it?” skeptics, not to mention the standards, open source, proprietary, silo, etc. skeptics. It makes my head spin and wonder how we’ll ever get there.

There are two reasons I’m still optimistic. First, in spite of all this, the field is growing and there are big players in the field. Second, many of the issues are starting to be formally addressed at what seems to be appropriate levels. That’s good. There is an area where I think more can be done, and that’s in developing better methods for validation and evidence. There’s still a huge emphasis on the traditional clinical trials model, which sets up a fixed and structured experiment, collects data over a period of time, consolidates and analyzes the data at the end of the trial, and, after a long period of time (maybe five years), reports the outcome.

The field shouldn’t have to wait five years to understand the effects of what by then will be an obsolete intervention. In addition, this is a field where there should be continuous improvement, where tinkerers thrive, where prototypes are the rule. It makes little sense to freeze development when you learn something that will make it better. One solution might be the type of adaptive trial that pharmaceutical companies are investigating. This is one where results at various stages in a trial can effect changes in the trial model. You might change the sample size, the target population, the delivery method, the formulation, etc., based upon analyzing data internal or external to the experiment. Analysis of this model is complex but can be manageable. In the end you should be able to deliver a safer, more effective product sooner.

That’s the germ of one idea for being able to develop an evidence base for mHealth quicker and better than today. These are my thoughts. I’m sure that there are smart and thoughtful people who have others.

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. 

Benchmarking Progress in Health IT

Being at TED last week led to some interesting conversations about data, health and the progress of health IT.  One conversation in particular stuck with me – a computer industry executive pointed out that the pace of innovation in the computer industry is orders of magnitude faster than in the health IT industry.  Orders of magnitude.  As in 10, 100, 1000 times faster.  A bold claim.  But then think about some of the advancements shown at TED:

 

- Microsoft’s integration of Photosynth and Sea Dragon technologies to create a Virtual Earth experience where you can now do a street level fly through of a city neighborhood and see the facades of the buildings around you.  And where there are web cams, seamlessly integrate live video into the view.

 

- A voyage through the Digital Universe, which is about what it sounds like – extending the Virtual Earth/Google Earth experience to all known objects in the universe.

 

- Google’s demo of an image recognition feature where the presenter took a photo of a postcard of a hotel with the Nexus One and Google (the omniscient Google – not the company) returned the name and address of the hotel.  And speech-to-speech translation through the Nexus One as well.

 

- John Underkoffler’s prototype interface in which people can gesture toward a screen to “pick up” a document, then walk across the room and drop the document onto the screen of a different computer.

 

When you step back and think about it, it’s truly extraordinary.  The gap between sci-fi and ship dates is closing rapidly.  Magic abounds.

So where are we with health IT?  Progress to be sure.  Pockets of excellence.  But as best as I can tell, we’re still struggling with threshold challenges around data exchange, interface design, workflow and deployment at scale.  I’m still processing all this and I’m probably missing something, so I’d really like to hear from people on this question – is the pace of innovation in health IT really that much slower than in the computer and software industries?  If so, then the implications for how we think about the integration of IT into health care are really serious.

Behavioral Economics and Public Health at TED2010

I particularly enjoyed the TED talk by Elizabeth Pisani, author of the book, The Wisdom of Whores. A former journalist whose work now focuses on drug users and sex workers, Pisani has a PhD in infectious disease epidemiology from the London School of Hygiene and Tropical Medicine and spoke on the second morning, one day after Princeton’s Daniel Kahneman, the father of behavioral economics.

Pisani voiced frustration during her talk about the mismatch between government policies and public health approaches and what influences the choices sex workers and drug users make. Her argument drew on the analytical framework behavioral economists like Kahneman have used so effectively to describe and understand the choices people make.

Pisani dismissed the field of public health as being limited by its reliance on a rational model to develop intervention programs. (TED likes iconoclasts.) In the case of sex workers, public health initiatives tell them engaging in unsafe sex with multiple partners can seriously compromise their health, presuming they will stop because it’s the rational choice to make. But Pisani argued that, in Indonesia, women become sex workers, in part, because they can make as much as five dollars a day when the average daily wage is 20 cents per day, a context that shapes their decision making.

 

I spoke with Elizabeth after her talk and asked her whether the field of public health could benefit from importing principles from the field of behavioral economics to improve analyses and interventions. She believes we need to focus on government and train political scientists in order to have better policy.

Thoughts?

The 90-minute TED

Much is has been written about TED 2010, so I thought I’d just chip in with a quick list of my five favorite TED talks that I urge people to watch online once they’re posted. (We’ll let you know via Twitter  — @pioneerrwjf —  when they are.) Before I get to the top 5, though, I do want to plug the talks by two of our Pioneer grantees – Nicholas Christakis and Philip Howard. If you haven’t had a chance to hear Christakis take you through the discoveries he made about the role of social networks in obesity and happiness or Howard put forth his ideas on how to change the legal system (and with it the way we approach malpractice in health care), please check them out on TED.com.

 

In no particular order, my five faves were as follows:

 

• Michael Sandel – a master teacher takes the audience through the meaning of justice.  Warm, funny and profound.

 

• Mark Roth – a natural storyteller tells a captivating tale of scientific inquiry as he seeks to understand a new and surprising way of saving people’s lives.  You get such an authentic sense of Roth’s curiosity and the joy with which he pursues his work.

• Sam Harris – a forceful argument for bringing expertise, knowledge and discoverable facts about how communities flourish into discussions of morality and values.

• George Whitesides – a thought-provoking and highly functional interpretation of simplicity.  “Simple” components are reliable, repeatable and predictable – thus they can be “stacked” to create remarkable systems

 

• Jake Shimabukuro – a virtuoso ukulele performance that you have to watch with the screen maximized and the sound way up.  Pure exhilaration.

 

Oh – and check out blippy.com – a site where you stream your credit card transactions to a social network, which sounds like the definition of conspicuous consumption but it might not be as crazy as it sounds – you could eliminate expense reports, for one thing.

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.

 

Games for Health NYC Regional Meetup - Agenda

As we mentioned a couple of weeks ago, Games for Health is convening a half-day meet-up in New York City this coming Tuesday, January 26th.  The meeting agenda is now available and it includes a great lineup of speakers and topics:

• Ben Sawyer, co-founder, Games for Health Project – Games for Health Today & Tomorrow
• Sam Yohannan, Senior Physical Therapy Specialist, Burn Research at New York-Presbyterian Hospital/Weill Cornell – Rehabilitation for Burn Patients Using Nintendo Wii
• Bill Crosbie, Lead Designer, Skeleton Crew Software – Operating Under the Influenza
• Paul Krebs, Memorial Sloan-Kettering Cancer Center – Virtual Reality Coping Skills Game to Prevent Post-Hospitalization Smoking Relapse in Tobacco Dependent Cancer Patients
• JP Pollack, Cornell University – Mindless Eating Challenge
• Jessica Hammer, Columbia University – Lit to Quit: A Mobile Game for Health
• Mark Grob, VRShell LLC – DWI Simulator Game
• Nicole Manfield, Physical Therapist, Department of Orthopaedics and Rehabilitation, New York Hospital, Queens – Using Nintendo Wii to Improve Upper Extremity Motor Function

For those of you in the area, there is still time to register. The event is being held the Hunter College Brookdale Campus (Room W323, 425 E 25th Street).  Attendance is free but an RSVP is required.  If you are interested please contact Beth Bryant (bbryant@dmill.com).

 

Games for Health NYC Regional Meet Up

Interested in hearing the latest on digital interactive games are assisting in anti-smoking efforts, rehabilitation for burn patients, and more? On Tuesday, January 26, Games for Health is convening regional thought leaders in the health games industry for a half-day event showcasing current industry projects.

 

Ben Sawyer, co-founder of Games for Health, along with game designers and health professionals, will discuss how different types of games are helping people manage heath conditions. This will be particularly valuable as a networking opportunity for researchers, game developers, students, and others in the greater New York/New Jersey area.

 

The event is being held the Hunter College Brookdale Campus (Room W323, 425 E 25th Street). Attendance is free but an RSVP is required. If you are interested please contact Beth Bryant (bbryant@dmill.com). Learn more about the event here.

Upcoming Events: The Inaugural SharpBrains Summit

Last November, we hosted a group of leaders in neurotechnology, neuroscience and behavioral health to discuss near-term and distant innovations in these fields. The forum’s conversation was nothing short of engaging and enlightening. In less than two weeks, January 18-19, many of these same folks will gather for the inaugural SharpBrains Summit.

The summit, which is fully virtual and interactive, has a packed lineup of speakers from academic and research institutions, health and medical institutions, and industry. Sessions range from panels on cognitive health and whether brain games and brain fitness software actually work – to discussion of technologies like automated neuropsych assessments and computerized cognitive behavioral therapy, EEG biofeedback, mobile cognitive aids and Transcranial Magnetic Stimulation (TMS).

Below is just a sampling of the sessions and speakers the summit has to offer:

• Alvaro Fernandez, SharpBrains & Others – Cognition & Neuroplasticity: The New Health & Wellness Frontier
• Charles Jennings, MIT & Stephen Macknik, Barrow Neurological Institute – Future Standards & Channels for Neuroplasticity-based Interventions
• Margaret Morris, Intel – The Future of Cognitive Health Tech – Intel’s Perspective
• Kunal Sarkar, Lumos Labs & Others – Baby Boomers and Beyond: Maintaining Cognitive Vitality (a look at whether brain games work)
• Michael Merzenich, UCSF & Others – How Cognitive and Behavioral Neuroscience Can Inform and Refine Mental Health Care

Dynamic discussions on emerging research, best practices and the opportunity to continue the conversation after the summit at the SharpBrains Network for Brain Fitness Innovation – are just a few of the reasons to register and participate.

Click here to register and please spread the word.

What Will You Be Attending in 2010?

Hello folks,

On the Pioneer Team, we’re thinking about our travel plans for 2010.  A lot of our travel is related to specific grants and projects, but we have a budget for meetings and conferences.  We’re building a list of events we might attend.  What we’re looking for are meetings and conferences where we might meet interesting and innovative people, find unconventional and future-oriented ideas.

To prime the pump, I asked a couple folks for their ideas.

From Susannah Fox at the Pew Internet & American Life Project:

• Health 2.0 – April 6-7, Paris (with apologies to Vernon Duke and Yip Harburg)

• Gov. 2.0 Expo 2010 – May 25-27, Washington, DC

• SXSW – March 12-21, Austin, TX

• TEDMED 2010 – October 26-29, San Diego, CA

• Medicine 2.0 – September 17-18, TBD

From Vijay Goel, Sr. Director, Healthcare Prize Development at X PRIZE Foundation:

• World Healthcare Innovation & Technology Congress – November 8-10, Washington, DC

• Milken Global Conference - April 26-28, Los Angeles, CA

• Versant Ventures Innovation Conference – TBD  

• TED2010 – February 9-13, Long Beach, CA

• Clinton Global Initiative – September 21-24, NYC

• TechCrunch50 2010 – TBD

• TiECon (The Indus Entrepreneurs) – TBD

From Jim Cashel, Chairman, Forum One Communication

• SXSW – March 12-21, Austin, TX

• Forum One Online Community Summit – TBD

• NTEN’s Nonprofit Technology Conference – April 8-10, Atlanta, GA

• TED2010 – February 9-13, Long Beach, CA

• Web 2.0 Expo – May 3-6, San Francisco, CA

Pulse + Signal Blogger Andre Blackman keeps a list of upcoming events here:

Other events we’re aware of include:

• PopTech – October 20-23, Camden, Maine

• Skoll World Forum on Social Entrepreneurship – April 14-16, Oxford, England

• The Feast – October 15, NYC

• Push the Future—TBD

• Mayo Clinic Transform Symposium—September, Rochester, MN

• Cleveland Clinic 2010 Medical Innovation Summit—November 1-3, Cleveland, OH

• Games for Health Conference – May 25-27, Boston, MA

We will compile all the submissions, add web links and share the results with everybody.

Open Notes and the Electronic Medical Record Podcast

"If you had the chance to look at what your physician wrote in your medical record about your last visit, would you take advantage of it?  Would this make your relationship with your doctor or primary care provider more collaborative? More effective?" These are just a few of the topics that host Madge Kaplan covered in yesterday's dynamic and engaging WIHI podcast on the Open Notes project and electronic medical records.

Guests included Dr. Tom DelBanco of Beth Israel Deaconess Medical Center and the Open Notes Project, as well as, Dr. Mary Merkel, a family practioner at Dartmouth-Hitchcock and Bob Desauiniers, Dr. Merkel's patient.

If you weren't able to catch yesterday's live broadcast, we encourage you to listen to the archived recording. You can also access additional information on the Open Notes project and the resources mentioned during program.

Gearing Up for the 2010 Games for Health Conference

The details have been announced for the sixth Games for Health Conference, the premiere annual event focusing on the role of digital interactive games in health and health care.

On May 25-27, 2010 at the Hyatt Harborside in Boston, health game developers, researchers, advocates and enthusiasts from all over will participate in specially developed learning and networking tracks: Active Gaming, Medical Training & Education, Physical Therapy & Rehab and Cognitive Gaming.  Have an idea for a session? Deadlines are fast approaching for the call for content so make sure to get your submissions in now.  

Every year, the Pioneer team shares highlights here on the blog and on our twitter account. While we will surely be sharing information before, during and after the event, we encourage you to experience the conference firsthand. Click here to register  and we hope to see you there!

Patient Safety and Medical Liability Reform Forum

This Thursday, Common Good, with support from Pioneer, will host an event in DC to discuss advancing patient safety and medical liability reform innovations. The forum’s topic is prompted by the September announcement from President Obama that the Department of Health and Human Services will launch a $25 million initiative to help states and health systems conduct innovative patient safety and medical liability demonstration projects. Health Courts could prove to be one of the key projects that states bring forward to the Agency of Healthcare Research and Quality (AHRQ) – administer of the grant – this coming January.

The event’s lineup includes some terrific panelists and is sure to generate interesting dialogue and ideas.

Common Good invites anyone who is interested in this issue to tune into the live webcast– feel free to share the link with other colleagues and contacts.  Here are specifics:

WHAT:  A forum on patient safety and medical liability reform.

WHO:

Dr. Lucien L. Leape, Chair, Lucian Leape Institute at the National Patient Safety Foundation

Michelle Mello, Professor of Law and Public Health, Harvard School of Public Health (and former Pioneer health courts grantee)

Nancy Foster, Vice President for Quality and Patient Safety Policy, American Hospital Association

Dr. Albert Stunk, Deputy Executive VP, the American College of Obstetricians and Gynecologists

Elaine Brightwater, Senior Project Coordinator, Center for Development & Disability, Uni. of New Mexico

Richard Boothman, Chief Risk Officer, University of Michigan Health system

Gordon Smith, Executive Vice President, Maine Medical Association

Dr. Alan Woodward, Former President, Massachusetts Medical Society

Martin Hatlie, President, Partnership for Patient Safety

David Oakley, Counsel, Healthcare, Manatt, Phelps & Phillips, LLP

Philip K. Howard, Chair, Common Good

WHEN:  Thursday, December 10, 8:30 a.m. – 2 p.m.

WHERE:  Via live webcast

Time for New Behavior Change Models and All Things Neuro

We had a really interesting meeting.  It was provocative and wide-ranging; I can’t begin to do it justice in the format of a blog.  Look for a more thoughtful and informative report in the weeks to come.  Also, we’ll work to set up an on-line space where people who are interested in these questions can come together.  In the meantime, here are just a few ideas and thoughts to come out of the meeting:

 

Do we need a next-generation model for behavior change?  The models we have for behavior change have enabled impressive gains and powerful programs, but they were largely developed 20 years ago when our ability to understand what is going on inside someone’s brain was much less developed.  Technology that didn’t exist 20 years ago provides a much more detailed picture of what influences decision and behavior, enough of a new picture that it may be time to re-evaluate our current models of behavior change.

 

Watch for increased use of the prefix “neuro.”  There’s neurotech, neuroplasticity, neuromodulation.  There’s neuroimaging, neuro-oncology, neurogenetics. and neurofeedback.  But when you seek to understand an experience at the neurological level—and you have the technology to do it—you can go anywhere: neuroaesthetics takes a scientific approach to understand perceptions of art and music.  At the other end, look for increased use of the suffix “ceuticals.”  We heard about the possibility of cognoceuticals that improve people’s capacity to learn (This has been happening for years, caffeine and nicotine, for example.  For five or six years now, there’s been the occasional story about use of Ritalin and Adderall as study aids.); emotoceuticals that could in a much more targeted way address emotional disorders or enhance certain emotional states; and, sense-ceuticals that could improve your sense of smell, touch, hearing.

Finally, monitoring your brain’s wellness could become a new responsibility for primary care providers.

Darwin Labarthe Lecture: Cardiovascular Disease Prevention

Next up from the Penn Positive Health Lecture Series is a talk by Dr. Darwin Labarthe on cardiovascular disease prevention. As part of his lecture, Dr. Labarthe will explore the contributions that new prevention strategies, social determinants of health and positive health may play in cardiovascular disease prevention.

Dr. Labarthe is the Director of the Division for Heart Disease and Stroke Prevention in the National Center for Chronic Disease Prevention and Health Promotion at the CDC. The second edition of is text, Epidemiology and Prevention of Cardiovascular Diseases: A Global Challenge, will be released in March 2010.

The lecture series is part of the Positive Health project which is funded by the Pioneer Portfolio and led by Dr. Martin Seligman of the Positive Psychology Center at the University of Pennsylvania.

If you have the opportunity to attend we'd love for you to share your thoughts.

Here are the details

Date - Wednesday, November 11, 2009

Time - 12:00 - 1:00 p.m.

Location - Dunlop Auditorium, which is in Stemmler Hall at the University of Pennsylvania School of Medicine, Philadelphia

Free and Open to the Public

Health IT: What’s the Future?

I’ve just come back from the "Discovery and Innovation in Health IT" workshop. You can find more on the workshop’s web site.  You can also follow the twitter stream by using the #dihit hash tag.  This workshop pulled together about 100 people – mostly researchers from academia, government and corporate labs – to lay out the key health IT research challenges going forward.  I’ve attempted to summarize some of the key themes and points that were raised, but I’ve by no means captured it comprehensively and I’m certain that I’ve taken a lot of license in my interpretation – so please add your voices – I’d love to get other perspectives.

The workshop started with some tone-setting presentations that illustrated the gap between the potential of health IT and where we are now.  Zak Kohane, in a brief introduction, noted that back when he was a grad student (more than a few years ago), clinical decision support was said to be right around the corner and while it’s still not reached its promise, Apple’s managed to generate 86,000 apps in its app store, many of which focus on health, in less than a year.  “Why?” he asked.  Bill Stead, recapping the work he led for the National Research Council’s report on Computational Technology for Effective Health Care, laid out the challenge starkly, saying (and I’m paraphrasing) that the path we’re on with health IT will not solve the problems in our system and could even make them worse.  Most hospitals have implemented IT in ways that rate a 5 on a scale of 100, where 100 is ideal and the best are at 15-20, he went on.  Today’s health IT systems “chain us” to the realm of transactions not decisions and often focus on post-hoc documentation.  “Would you ever get into an airplane where the pilots go through the checklist after they’ve taken off?” he quipped.  He focused a lot on the need for cognitive support, showing a hockey stick graph of the number of facts that will be relevant to a given clinical decision over time (this theme reappeared several times over the two days).  The number is expected to reach 1000 by 2020, while the number of facts that a human can contemplate while making a decision remains stuck at um, five.

 

Other presentations, notably from Dietrich Stephan of Navigenics and Craig Feied from Microsoft, extrapolated from recent progress in genomics, proteomics and systems biology to sketch out a future of increasing precision in our understanding of diseases (hence the hockey stick of medical knowledge).  In these visions, the increasingly ability to subclassify diseases at the molecular level, to understand the biological processes that cause them and to design laser-like therapies to target them, leads to precision diagnoses, early detection and better understanding of which therapies will work and which won’t.

TEDMED 2009 = Innovation, Technology & Inspiring Stories

I really liked TEDMED. There was lots of wiz-bang new technology stuff – genetics, organ regeneration, ways to slow the aging process, wearable sensors that can monitor and wirelessly transmit data that traditionally required a person to be in a controlled environment with leads connected to multiple body locations. It’s really exciting to see what may be possible in a few short years. Of course, no one really talks about how long it will take, how real people will be able to use these gadgets and how they’ll be paid for.

 

There are also great stories of human accomplishments – either overcoming tremendous adversities to triumph or innovative and caring ways to help others. Every one of the presentations is worthy of commentary. In addition, it’s amazing to realize the number of incredibly smart people that were there. Not only are they smart but each has accomplished more than one might expect, even given their brain power. And many of them are truly nice and approachable.

 

For me the highlight of the event was Jamie Heywood talking about the Patients Like Me site. The reason for this is less that they are using some pretty impressive analyses but more that you have a platform where ordinary people can record their experiences with their conditions and treatments in a way that contributes to a shared and actionable understanding, without expert clinical intervention. The reality is that right now this helps each participant deal with her or his condition. In addition, it is beginning to yield data that can expand clinical knowledge faster and more broadly than traditional methods. Whether the scientific community can learn how to make use of that data seems to me a question of how open the professionals are to exploring nontraditional sources. I certainly hope they are.

Connecting Revolutions in Neuroscience with Health and Health Care

As a national leader in health and health care, the Robert Wood Johnson Foundation is continually searching for opportunities to generate greater impact. One of the charges of the Pioneer team, the most explicitly future-oriented of RWJF’s program areas, is to identify and investigate areas where transformative breakthroughs feel most possible.

In line with this charge, working with the Monitor Institute, we’ve invited a provocative group of academics, researchers, physicians and industry leaders in neurotechnology, neuroscience and behavioral health to step to the ledge of current innovations in these fertile and promising fields – and then step beyond it – begin to anticipate what near-term and distant innovations in these fields could mean for health and health care.  

On November 11-12, this group, along with staff from the Foundation and Monitor, will engage in a series of highly iterative, forward-looking discussions that will culminate in a wrap-up that integrates the thinking across all three disciplines and outlines connections and implications for the future of health and health care.

This event is a new approach for Pioneer. It is not connected with any prospective funding initiative. Rather, we play the role of convener, focused on bringing together the experts who hold the key to identifying and advancing the next generation of innovations in this space.

I, for one, can’t wait to see what everyone has to say. If you would like to follow the conversation about the Forum on Twitter — leading up to, during and following the event — please use the #rwjfneuro hash tag.

Interested in more information?

Pre-read

Participants

This Is a Brainstorm

There is no such thing as a blank check — particularly in this economic climate. Resources are not endless; parameters exist. But the Pioneer Portfolio is dedicated to powering ideas that have the ability to truly transform health and health care and — to do so — we need to encourage people to THINK BIG.

From October 27-30, members of the Pioneer team will be in San Diego to participate in TEDMED2009. While we are there, we will ask other participants — if someone was to hand them a blank check — what they would do to transform the future of health and health care? What kind of problems do they see as being “stuck” and that, if solved, could bring about significant improvements 5, 10, 15 or more years down the road?  Where are the breakthrough opportunities?

But we don’t want to limit the conversation to the group at TEDMED; we want to take the conversation to Twitter and ask a broader audience for their ideas. Like you.
 
There is no blank check.
 
This is not a call for proposals.
 
This is a brainstorm.
 
We want to hear your ideas because they inspire us and because we hope you might inspire each other.
 
If you would like to participate in the conversation and let us know how you would transform the future of health and health care, please tag your “tweets” with the #blankcheck hashtag. We’ll “retweet” them to share with those who follow Pioneer on Twitter and we’ll share them with everyone at TED MED through a live feed we’ll have playing throughout the event. If you don’t want to share your own ideas, but want to see what other people are thinking, you can follow the conversation here. And please consider telling others about the #blankcheck conversation.

Positive Emotions, Diverse Social Networks and Social Status = Positive Health?

We’re pleased to announce what is sure to be another engaging program from the Penn Positive Health Lecture Series. On June 24^th, Dr. Sheldon Cohen, Ph.D., will lead a talk on the roles that positive emotion, diverse social networks and perceptions of social status play in morbidity and mortality.  

Dr. Cohen, who is the Robert E. Doherty Professor of Psychology at Carnegie Mellon University, has published work on the roles that stress and social networks can play in physical and mental health.  As part of his lecture he will discuss his experimental work where mental and biological predictors are assessed in healthy people before their exposure to the common cold virus.

The lecture series is part of the Positive Health project which is funded by the Pioneer Portfolio and led by Dr. Martin Seligman of the Positive Psychology Center at the University of Pennsylvania. 

If you have the opportunity to attend we’d love for you to share your thoughts.

Here are details:

Emphasizing the Positive: Positive Emotions, Diverse Social Networks, and Social Status Contribute to Lower Morbidity and Mortality

Date - Wednesday, June 24, 2009
Time - 12:00-1:00 p.m.
Location - Dunlop Auditorium, which is in Stemmler Hall at the University of Pennsylvania School of Medicine, Philadelphia
Free and Open to the Public 

Games for Health: A Thought from Day One

Well, now I finally know firsthand what the buzz is about! Day one of this year’s Games for Health conference was a thoroughly enjoyable primer on this incredible field. Having been up since about 4 a.m. in addition to being brand new to this space, many of my notes unfortunately make less sense to me at the moment than I hoped they would. So rather than get into any of the specific topics raised during some sessions I attended, I’ll start and finish this health games post with a brief personal note. 

The one time I might have ever been anything approximating a gamer was during the Atari 2600 days, when like so many of my pals, I sported blistered palms from marathon sessions of Pitfall and Track and Field. During some background reading a few days ago, I came across some telling industry information from the Entertainment Software Association. One statistic that really stuck with me is that the average age of the most frequent game purchaser is not 17 or 18, but 39. I don’t recall if that stat spoke to people buying games for themselves or for their children, but either way it got me thinking. With all the incredible developments taking place in the field today, when my little guy hits the gaming age, I have a feeling his dad is going to catch the bug again, too.

Let the Gaming Begin!

Today the 5^th annual Games for Health conference kicks-off in Boston, MA.  The conference has sold out and for good reason: the schedule is packed with a dynamic lineup of speakers and sessions.  Pioneer has been a major sponsor of the conference since 2004 and we’re excited that it has grown to be the premiere health gaming event.   

Several of Pioneer’s grantees will feature their work during the conference:

• Debra Lieberman, national program director of Health Games Research, University of California at Santa Barbara, will be presenting on the “Age of Sensors,’ along with Marientina Gotsis, University of Southern California and Kevin Stanley, University of Saskatchawan, today at 2:00 PM.  A couple of Health Games Research grantees are presenting as well – Ann Maloney of Maine Medical Center will talk about social and psychological factors linked to exergaming play today at 4:30 PM and a team from Cornell University will update attendees on progress with their Mindless Eating Challenge game study tomorrow at 3:00 PM.  
• David Lowenstein from The Joan Ganz Cooney Center, will be moderating a discussion on ‘Games for Health and Education: A Policy Report’ also today at 2:00PM.  Look for news on an upcoming DC event on this report, to be held June 23.
• Ben Sawyer, President of Digitalmill and Games for Health Founder, will be leading two presentations during the conference. ‘Games for Health Potpurri: 10 Things We Might Have Overlooked until Now’ and ‘Health in Games: An Update’. Both sessions are tomorrow, June 12, beginning at 2:50PM

If you are at the conference you should stop by and listen to their sessions. 

These are just a few examples of the packed lineup that features the latest in exergaming, disease and health management, skills and workforce training, rehabitainment, epidemiology, and virtual worlds and health.  If you’re attending we’d love to know about which sessions or speakers you are excited to hear.

Also, we’re excited to see that HopeLab, with whom we partnered on Ruckus Nation, announced that they are collaborating with Virtual Heroes to create the next version of their amazing game, ReMission!, which helps kids fight cancer.  Funding partners include Vivendi, the Annenberg Foundation and the Lance Armstrong Foundation. 

As a reminder, Pioneer Portfolio will be tweeting throughout the event @pioneerrwjf and you can follow all live twitter feed from the conference here and here.  If you plan to tweet from Games for Health make sure to include the conference hash tag #gamesforhealth or #g4h09.  

A Series of Looks at Games for Health

June is shaping up to be an exciting month in the world of games for health and for the Pioneer blog.  For several years, Pioneer has been investigating how games can be used to improve health and health care. 

On June 11-12, leading stakeholders and creative forces from game firms, health institutions, the academic and research community and elsewhere are convening in Boston for the 5^th annual Games for Health conference. Steve Downs, the Pioneer team’s assistant vice president, and Ari Kramer, communications associate, will be at the event and will share ideas and information here and on Pioneer’s new  Twitter account. 

Later this month, we’ll be welcoming a series of guest posts on new evidence from Sesame Workshop’s Joan Ganz Cooney Center  on the power video games can have in addressing some of the most pressing health challenges facing America’s children.  The posts will explore the topic of games and games for health from a variety of point of views.  It’s going to be a month packed with interesting and challenging discussions on games for health and we hope you’ll join in! 

Join Us for Games for Health 2009--Boston, June 11-12

The 5th Annual Games for Health Conference is coming to Boston on June 11-12 with a packed lineup of speakers from game development firms, health and medical institutions, academic and research institutions and elsewhere.  The conference has grown in to the premiere event for networking, identifying new opportunities and sharing learning in this dynamic space.  This year features three game expo spaces, special tracks on both exergaming and cognitive health, and 55 sessions covering the latest in:

• exergaming
• disease and health management
• skills and workforce training
• rehabitainment
• epidemiology
• virtual worlds and health

Here's a sampling of some of the sessions and speakers - click here for a full program schedule to date and to watch a video on upcoming event highlights:

• Jacob Vogelstein, Johns Hopkins Applied Physics Lab - Using Guitar Hero III to create a novel training and evaluation device for upper-extremity amputees
• Debra Lieberman, Univ. of California, Santa Barbara and Health Games Research national program - The Coming Age of Sensor-Based Health Games
• Paul Blair -- Capturing Wiimote & Accelerometer Data for Active Gaming Evaluation
• Ben Heckendorn, benheck.com - Modding and Hacking Game Hardware for Health: Ask and you might receive...
• Doris Rusch, MIT/Gambit - "Akrasia": Metaphorical Depiction of Addiction

Pre-conference workshops will also take place on June 10:  Games Accessibility Day features talks, networking and demos dedicated to making all games more accessible, and helping people with disabilities play their way to better health and wellness.  Virtual Worlds and Health Day looks more in depth at the potential of virtual worlds, which combine social systems with game-based interfaces and graphics to create entirely new spaces to train, practice and visualize. Such systems hold great promise for advancing health and health care through layering on of game play or enabling pure simulation or new forms of social interaction.

Click here to register -- a 15% registration discount is available by plugging in dmgfh09 to the registration code box.  Lodging and conference events are at Boston's Hyatt Harborside Hotel.  Please spread the word and hope to see you there!

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?”

Nortin Hadler Lecture - Personal/Social/Policy Barriers to Wellness When it Comes to Low Back Pain

Next up, the Penn Positive Health Lecture Series features Dr. Nortin Hadler speaking on "Backbone: Personal, Social and Policy Consequences of Low Back Pain."  Nortin Hadler M.D., MACP, FACR, FACOEM, is professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill and attending rheumatologist at UNC Hospitals. Having analyzed the "illness of work incapacity," his most recent book is "Worried Sick: A Prescription for Health in an Overtreated America."  

The lecture will consider backache as a human predicament, a profound social problem, a medical issue, and a vexing public policy challenge.  Basing his critique on an analysis of the most current medical literature as well as his clinical experience, Hadler argues that regional back pain is overly medicalized by doctors, surgeons and alternative therapists who purvey various treatment regimens. Furthermore, the design of "health," workers' compensation, and disability insurance schemes thwarts getting well. For the past half-century, says Hadler, back pain and back pain-related disability have exacted a huge toll on modern societies, in terms of pain, suffering, and financial cost.

Here are details:

Date - Wed., April 22, 2009
Time - 12:00-1:00 p.m.
Location - Dunlop Auditorium, which is in Stemmler Hall at the University of Pennsylvania School of Medicine, Philadelphia
Free and Open to the Public

Positive Health Lecture Series Kicks Off With Sir Michael Marmot

In 2008, Pioneer funded Dr. Martin Seligman to extend his influential work in the area of positive psychology in to the realm of "positive health"--a new approach to improving well-being that emphasizes “health strengths” rather than the conventional mix of disease diagnosis, treatment and prevention.  Building on progress in the positive psychology field, which applies validated interventions to boost the strengths and virtues that help individuals thrive in daily life, Seligman and his team are exploring whether positive health may reveal a variety of potent, low-cost approaches that can serve as a buffer against physical and mental illness and, more importantly, enhance people’s overall health strengths.

The project is hosting a speaker series that kicks off next week at University of Pennsylvania's Medical School.  First up is Professor Sir Michael Marmot, chair of the World Health Organization Commission on Social Determinants of Health and director of the International Institute for Society and Health, University College London.  Marmot will address the Commission’s work to examine underlying social determinants of health and how it is transforming global and national policy debates to improve health.

Admission is free and open to the public, so feel free to spread the word among those in the NJ/PA/DE area.  Here are the details:

Date: Wednesday, March 4

Time: 12:00-1:00 pm

Location: Dunlop Auditorium in Stemmler Hall at the University of Pennsylvania School of Medicine, near 36th and Spruce Street in Philadelphia.

Need more specifics?  Click here.

Posting from TED: Bacteria May Be The World’s Best "Risk" Players

According to Dr. Bonnie Bassler’s TED presentation on Friday, bacteria operate inside your body in way that’s similar to the game of Risk.  Bassler’s a molecular biologist at Princeton and she studies the way bacteria communicate with each other.  She said they’ve found that bacteria send out a simple chemical signal that can only be read by bacteria of the same type.  When there’s enough bacteria sending enough like-minded signals, the bacteria launch an attack (technically, it exercises a specific behavior it’s genetically programmed to exercise…in some cases that could be good for the host, in others, such as with MRSA, it could be really bad).  This communication is called quorum sensing.

It’s more complicated and more elegant, though.  Bacteria have a second simple chemical signal they send out.  This one can be read by all bacteria.  It tells a particular type of bacteria what other types of bacteria are in the host and how much of it is there.  Too much of bacteria Y, and bacteria X won’t launch its attack/exercise its behavior.

In Risk, it was always one thing to get control of Australia and another to gain enough reinforcements to successfully attack another piece of territory.  And the question of whether to attack was always informed by the size of your opponent’s army.

Bassler’s work is more than just a game.  It suggests a new approach to dealing with bacterial infections, one that involves interfering with the communication mechanism of the bacteria.  This may open up whole new avenues for pharma companies working to fight infections in this age of intensified antibiotic resistance.  In a related vein, policy changes that could facilitate the development of new antibiotics were outlined in the report "Extending the Cure: Policy research to extend antibiotic effectiveness," produced under a grant led by Ramanan Laxminaryan. 

Posting from TED: Health, Design and Game-Changers

Sorry for the lapse in TED posting…never have I seen an event program as packed as this.  It’s made getting back to the hotel a challenge, and throw in some tenuous wireless connections…well, you get the point.  But here’s a recap of RWJF’s luncheon at TED, held Thursday. 

We had a packed room of 60 TEDsters--including the creators of Del.icio.us and hotornot.com, heads of design schools, the president of user experience design firm Adaptive Path (developer of the Charmr, from an earlier Emily Culbertson post), execs from venture capital and game development firms, David Pogue (technology columnist for the New York Times and one of my favorite writers) and the founder of DNA Direct (a genetic testing and management company)—with about 30 who lined up to attend, but unfortunately we couldn’t accommodate due to space limitations.

Pam Omidyar, founder of HopeLab gave a great recap of the inspiration behind and clinical outcomes linked to Re-Mission, the video game developed for kids battling cancer.  There were cheers when she showed the results, which demonstrated that kids who played the game had higher levels of treatment adherence and more knowledge about their disease ,and were more empowered to fight back.  She showed amazing MRI imagery that showed players’ brains on Re-Mission.  Areas tied to emotional processing lit up, which was key to internalizing the lessons underlying the challenge and excitement of the first-person shooter game.  We were honored to have Taylor Carol and his dad, Jim, with us – Taylor is now in full remission from leukemia, played the game during his six months in the hospital, and is the star of our promise story on Re-Mission. 

John Maeda, president of RISD, outlined distinctions in mission and change vision between designers and artists, and called on more designers to apply their skills, thinking, creativity and ingenuity to save the world.  Having given some of the more popular TED Talks in years past, he provoked the group to think differently about the potential of this space.

The group then turned to the game jam, led by Ben Sawyer and game designers Noah Falstein and Larry Holland.  The crowd first decided to tackle the issues of chronic disease, and then refined the challenge further to focus on actions and behaviors.  Some of the ideas they proposed that seemed promising to the game developers included:

• Addressing metabolic syndrome, using a game approach to help navigate the different associated conditions and co-morbidities, trade-offs among treatments, and patients’ abilities to manage aspects of their condition.
• Developing a realistic, action-based approach to the immunization debate that can inform decisions around vaccine safety.
• A game focused on how to manage depression…when asked why that intrigued them, the developers replied, “Because it seems hard.”  
• Helping patients better navigate health care systems and services.

Noah and Larry continued to work through these possibilities in to the evening on Thursday and all day Friday.  The results of their concept development will be unveiled at our TED Lab exhibit space this morning.

We’re grateful to Pam, John, Ben, Larry and Noah for joining us and shining a spotlight on the potential for games to spark big change in health and health care.  I think people came away with a sense for that potential to touch people’s lives and help them pursue health goals and make informed decisions in uniquely powerful ways. 

Ben and his team are going to see where these ideas may go from here, so let us hear your input on how this exploration can lead to the next breakthrough health game.

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?

Bringing our Game to TED – 6 Days and Counting

For the first time, RWJF and Pioneer are a sponsor of the annual Technology, Entertainment and Design conference, kicking off next week in Long Beach, Calif. 

In exploring the opportunity, we thought a range of issues and people supported by Pioneer might be interesting to TED – what we landed on was a look at of the games for health field, how it might transform health and where it’s going in the future.

The intersection of video and computer games and health and health care boils down to a pretty interesting question: what possibilities open up when you approach health as a design challenge?  It’s one we’ll be digging in to at TED, as our luncheon event features world-renowned designer, researcher, artist and thinker John Maeda, president of the Rhode Island School of Design.  Joining him is Pam Omidyar, co-founder of the Omidyar Network and of HopeLab, the group that launched the sophisticated, fun and effective kids’ cancer game, Re-Mission.  We’re really honored to have them with us.

John and Pam will hand it over to Ben Sawyer of Games for Health to lead TEDsters through a mini-game jam.  Ben will be joined by game designers Noah Falstein of The Inspiracy and Larry Holland of Totally Games…they’ll lead TEDsters through a structured brainstorm process that lets the audience throw out ideas for where a game solution might really push progress on a big health or health care challenge. Then, for the next day and a half, the game designers will feed that input in to their creative process, rapid-fire sketching out pathways to solutions until they emerge with a compelling health game concept by the last day of TED.  We’ll also have a “Lab” space with an exhibit designed by the super-talented team over at Daylight Design, which will guide TED attendees through the Now, Near and Next breakthroughs in the health games field. 

I’m really excited by all that I’ll hear that I know I can’t begin to expect…the unanticipated connections to the kind of social change that RWJF and Pioneer is after.  Nancy Barrand, Paul Tarini and I will be there and posting daily updates to the blog – we hope you’ll join along for our first TED and shoot us some comments and questions.

A few takeaways from the Project HealthDesign conference

Over the last week and half I’ve had a chance to talk with people about Project HealthDesign’s New Frontiers in Personal Health Records conference and follow the blog discussions on the event. James Ralston, the principal investigator for the University of Washington’s Project HealthDesign grant, pointed out to me recently that we went the full range from the user-centered design issues (e.g. how to get the most out of a small cell-phone screen) all the way to policy implications such as the need to alter reimbursement policies. And the conference had a similar range – there were a lot of concepts crammed into an 8-hour session. So here’s my shot at distilling them.

It’s not the record, it’s what you do with it. It’s a simple mantra, but it seems to be catching on. The previously dominant idea of a PHR as a window onto a medical record seems to be fading as more and more people (including policymakers) are recognizing that applications building on the record hold more promise to improve people’s health.

When end users are engaged in the design, the designs look different. At the start of this program, we postulated that putting the end users (patients, consumers, pick your term) at the center of the design process, they would come up with a very different set of PHRs and that’s exactly what happened. The designs are much more mobile, action-oriented, and unobtrusive than earlier visions of PHRs. The grantee teams were constantly challenged to fit their designs into the flow of people’s lives, to free the user from their desktop PC, to work within an existing calendar, rather than creating a “medical calendar,” to make use of the devices people already carry. The nine project videos underscored an important theme – that health is but an enabler (or disabler) of the lives we lead – not an end in itself.

Not everyone gets the PHR ecosystem concept. We (and others) have been pushing this idea for a while now, but there was a fair degree of confusion about it at the conference. The jargon isn’t so important and different people use different terms, but there are basically three types of actors in this ecosystem: 1) the source data providers (e.g. pharmacies, physician offices, hospitals, insurers) that hold parts of a person’s medical record; 2) the PHR platform providers (e.g. Google Health, Microsoft HealthVault, Dossia) that can assemble and maintain a person’s record from multiple sources and that offer application programming interfaces (APIs) for 3rd-party application developers; and 3) the 3rd-party application developers that build the very specific applications (such as those designed by the Project HealthDesign teams) that people can use to take care of their health needs. There are plenty of nuances – for example, the same organization could participate in all three levels – but the key is to allow for the separation of these three functions. Separating the functions enables competition and innovation in the space that markets traditionally operate very well – in meeting the diverse needs of end users.

The policy implications are far-reaching. We could have spent a full day and then some on the policy implications of next-generation PHRs and the PHR ecosystem described above. There are issues about stewardship of personal health data (made even more complicated by data that are user-generated, such as a data on medication usage, diet, exercise, etc.), issues of asymmetric regulation, where different types of organizations providing the same services face different regulatory schemes (e.g. some are covered by HIPAA and others are not), and, most fundamentally, implications for how health care is delivered and financed. The applications demonstrated at the conference make possible a very different patient-clinician relationship, one in which a good deal of data exchange and communication takes place between visits, which could become fewer and further between. That kind of relationship is not well supported in most arrangements today.

We’ve come a long way in two years. Much has happened since the launch of Project HealthDesign two years ago. We’ve seen the emergence of HealthVault, Google Health, Dossia, the iPhone, the iPhone apps store, Android, PatientsLikeMe and the Health 2.0 movement. The key elements of the ecosystem are in place – more and more providers with electronic record systems, platform offerings from major companies with huge consumer brands, and a rapidly growing developer community.

But there’s a long way to go. The reality is that the pieces are in place, but only a precious few have access to them in a truly connected way. Only a few leading health care providers have announced links to GoogleHealth or HealthVault – and we’re not at the kind of plug and play stage where my apps run seamlessly on my handheld, retrieving data from my consolidated record which is constantly updated by my various health care providers.

All in all, though, it was a day for optimism. A day that showed what could be, a day that displayed creativity and ingenuity, and above all, a day that brought together a lot of people who want to make the vision a reality.

Project HealthDesign Webcast now available

Click here for a complete Webcast from last week's Project HealthDesign forum on the future of personal health records.  The Webcast is broken down by sessions so you can check out as much or as little of the day as you like.  I also encourage you to check out a set of short videos that drive home what it might be like for patients to use next-gen PHR tools and applications in the future -- you can access them by clicking on the links to each grantee's summary. 

We hope you'll continue to give us your reactions to the day's discussions, whether you saw them live or on the Web. 

Blog talk post-Project HealthDesign event

More than 200 guests joined us for Wednesday's event, "New Frontiers in Personal Health Records: A 'Report-Out' from Project HealthDesign and Forum on Next-Generation PHRs." It was an exciting day -- the grantee teams rolled out their diverse PHR application prototypes and talked candidly about the themes that tied them together: focusing not just on the records but the actions you can take given the information; the power of looking beyond medical data to incorporate observations of daily living; and moving past PC-based access to practical, on-the-go IT tools that fit in your daily routines.  And we heard some provocative panels talk about common platform solutions to support a vibrant marketplace of such tools, key policy considerations, how health systems are harnessing the future of PHRs, and directions that industry leaders may take to meet consumers', employers' and others' needs.

Steve Downs will have more to write on Pioneering Ideas about his thoughts on the event, and where we go from here.  But in the meantime, bloggers at the event captured some interesting insights:

• Keynote speaker Amy Tenderich of DiabetesMine summarizes many of the key themes that RWJF President Risa Lavizzo-Mourey presented at the start of the day, and which carried through the whole event.  Amy's great talk at lunch reminded us with urgency, and yet much hope and humor, that the health, IT and design communities should sit up and pay attention to the fact that devices should fit people's habits, preferences and styles in addition to the particulars of their health conditions. 
• Lygeia Ricciardi live-blogged a couple of posts during the day on the Project HealthDesign blog.  She first commented on the morning grantee panels -- a key point that rang through all of their work was that illness happens to the whole person, not just a body part or system.  Designing tools through patients' eyes enabled very different breakthroughs as a result.  She later drove home a point that U. Rochester grantee George Ferguson stated -- that the field should be moving toward delivering a seamless ecosystem of PHR tools and technologies for consumers, not a plethora of stand-alone gadgets.
• Vince Kuraitis of Better Health Technologies and the e-CareManagement blog moderated an afternoon panel with executives from Google, Dossia and Microsoft to tease out where the industry may be heading.  He writes on the evolution from PHRs to comprehensive PHR systems, and why this transition may take hold among patients more easily than providers.
• Family physicial and patient empowerment champion Ted Eytan posted live from the opening session and shared a great set of photos from the event.
• It was interesting to read why an attendee from the Center for Student Health and Life thought students might be the quickest adopters of PHR applications like the ones presented on Wednesday.  They think it's due to student's pervasive reliance on social networking tools and the promise that PHR technologies hold for wellness promotion. 
• Federal Telemedicine News posted a range of points made by many of the grantees throughout the morning. 

Thanks to everyone who participated in the event.  Look for a link to a complete Web cast of the day on Monday.

Forge New PHR Frontiers with Project HealthDesign at 9/17 Forum

We hope you can join us September 17th in Washington, DC for "New Frontiers in Personal Health Records: A Report-Out from Project HealthDesign and Forum on Next-Generation PHRs."  Project HealthDesign and its grantees have been pushing the potential for personal health records (PHRs) and related technologies to help consumers take charge of their health like never before.  This free, one-day event will feature the grantee design teams, who will showcase the prototype PHR applications they have been developing over the past 18 months, along with experts discussing key issues in this space, including:

• ways that new PHR designs can enhance how people manage their health and coordinate their care in the course of their everyday lives;
• the most important policy questions that will shape this dynamic field;
• where health system and tech industry leaders see this field heading, and its potential for empowering consumers;
• the innovative possibilities that emerge when you involve end users in the design and development process from the start;
• functional requirements and common platform components developed by Project HealthDesign, and how they could have broad application across the PHR field;
• ethical, legal and social implications presented by next-generation PHRs, and more.

Speakers confirmed thus far in the lineup include:

• Colin Evans, President and CEO, Dossia
• Risa Lavizzo-Mourey, President and CEO, Robert Wood Johnson Foundation
• Keith Toussaint, Senior Program Manager, Microsoft HealthVault
• Amy Tenderich, DiabetesMine blogger
• Carol Diamond, Managing Director of the Health Program, Markle Foundation
• Karen Bell, National Health Information Technology Coordinator, Office of the National Coordinator for Health Information Technology

The event is being held at the Westin Washington, D.C. City Center -- please e-mail Erica Garland or call 202-745-5119 to register.  We hope to see you there for what looks to be a day of fascinating discussion and exploration.

Save the Date - New Frontiers in Personal Health Records

Mark your calendar now -- we're pleased to announce that details have been set for "New Frontiers in Personal Health Records: A Report Out from Project HealthDesign and Forum on Next-Generation PHRs."  Here's the logistical info:

Date: September 17, 2008

Time: 8:00-5:00

Location: Westin Washington, DC City Center

RSVP: Erica Garland, GYMR Public Relations

We hope you can join us to explore the vast potential for personal health records (PHRs) and related technologies to help consumers take charge of their health like never before. The event also provides the opportunity to showcase the array of next-generation, user-centered PHR applications developed by grantees of Pioneer's Project HealthDesign program.

Project HealthDesign grantees have pushed PHRs far beyond just providing consumers with access to their health information...these PHR tools are designed to meet people's varied and specific health needs, interpreting their health data and delivering customized feedback that can guide their daily health decisions. In addition to highlighting what Project HealthDesign has learned in the process of developing these tools, the Showcase will feature panels and discussions with leading health IT pioneers, policy makers and industry experts. At the event, you will have the opportunity to:

* Participate in an open dialogue about the prototypes and the future of PHRs, including lessons learned from user-centered design and policy directions to support continued growth and innovation in the PHR arena.
 
*  Engage in discussions with key experts on a variety of topics, including future directions that key industry players may take in this arena.

* Hear lessons coming out of Project HealthDesign and how they might influence emerging PHR services.

* See the prototypes that Project HealthDesign innovators developed to demonstrate the practical applications of PHRs to improve people's daily health.

* Learn about the functional requirements and common platform components developed by Project HealthDesign and explore how they could have broad application across the PHR field.

Please spread the word to others that may have interest in this event - we'll be posting back regularly with updates on the agenda and speakers.  We hope to see you in September!