Pioneering Ideas

Wanting the Computer to Know Who I, the Patient, Am

The post below comes from our grantee Jan Walker. She and Tom Delbanco, of Beth Israel Deaconess Medical Center, ran a series of focus groups funded by Pioneer to get at the heart of people's preferences for their health information needs, and what they would be open to considering when it came to using health information technologies to engage in managing their health. These focus groups were designed to help inform our Project HealthDesign work, but the insights they yield extend far beyond that program. The findings are shared in the June 2009 issue of the Journal of General Internal Medicine.

I recently read the posts by/about Sandy Pentland and Clayton Christensen describing futuristic applications of IT to health care. Then, two weeks ago, I heard Dr. Robert Brook address a plenary session of the Society for General Internal Medicine annual meeting suggesting that the presidential election in four years could well hinge on the state of health care. Among other things, he urged us to personally assume responsibility for disrupting the mess we are in.

Consumers are also ready for a sea change. My colleagues and I had a fascinating experience talking with consumers from many different walks of life in four parts of the country. To a remarkable degree, they believe computers should be personal partners that help them manage garden variety health issues, freeing clinicians to manage serious problems and chronic illness. They want full access to their medical records and expect computers to coach them about health behaviors by integrating information from their records with their personal preferences and data derived from monitoring devices. They appear willing to accept advice from algorithms and faceless online clinicians and to trade guaranteed privacy for guaranteed access to their information in an emergency.

I was struck by how much these consumers understood about the predicament of their personal physicians, from paperwork hassles to productivity pressures. And they seemed genuinely sympathetic, wanting to use technology to contribute to solutions. “I get the same antibiotic for the same sinus infection every winter; why do I need to go see my overwhelmed doctor for that?” “Why can’t I get an automated reminder for my annual mammogram with options about where to get it, instead of having to get an order from my doctor, who may not remember to do it?”

Peoples’ long term financial health used to be largely in the hands of pension programs, but much of this responsibility has lately been transferred to us as individuals. Now many of us make our own decisions about savings and investment, we manage our own retirement portfolios, and financial companies compete for our business by offering services that enable us to do it. Could the same thing happen in health care? Health is also a long-term investment – could consumers rather than their personal physicians assume responsibility for “investments,” such as routine preventive care? What if providers and health companies competed for patients not just on quality and cost, but also on services that enable people to manage their own health and minor illness? What if consumers could shop for disease-specific applications that plug into their PHRs, just as they shop for applications for their mobile phones?

These possibilities are barely glimmers on the horizon. They could help us to create a truly patient-centered health care system and get beyond what is often empty rhetoric.

Teens, Texts and PHRs

Kudos to Project HealthDesign grantee Living Profiles for scoring high marks for its prototype demo at the Health 2.0/Information Therapy conference last month - and in the process, grabbing a speaking spot on the main stage at the Health 2.0 conference in San Francisco this fall.

The Living Profiles team, which includes experts from the Art Center College of Design in Pasadena, Stanford University Medical School, and Children’s Hospital of Orange County, has created what they refer to as a "health-focused MySpace" - a cell-phone personal health record (PHR) application that serves as both an information source and communication space for teens who are dealing with chronic illnesses.

The prototype enables teens to aggregate real-time information — moods and behaviors coupled with photos or streaming video — in the context of short- and long-term goals. (According to Mobile Health News, conference attendees were particularly keen on Living Profiles' plan to mine teens' cell phones for text messages for keywords that shed light on moods.) The hope is that teens who use this technology will be more inclined to share information with their health care providers, which will lead to better ongoing communication and, ultimately, greater self-management and more personalized treatment plans.

Living Profiles is one of nine teams that Project HealthDesign is funding to shift the emphasis in PHR innovation more toward action and improved health decision-making. On June 3, brief proposals are due for the project's second round of funding, which will award grants for demonstration projects that test how data on meals, sleep, exercise, pain and even moods can empower patients to better manage their health, and add new insights into the clinical-care process. Interested in learning more? Check out the latest CFP.

The Need to Disrupt the Patient Gown: New Research, New Thinking

The efforts of Pioneer grantee North Carolina State University to redesign the current hospital gown are featured on the front page of today’s Wall Street Journal.  Congratulations to Blan Godfrey, Traci May Lamar and the NCSU team – it’s great to see prototype designs emerging from their comprehensive research to determine the needs, constraints and priorities of players up and down the hospital gown supply and demand chains.

 

The article takes a light touch with the subject matter.  True, most everyone hates the gown because it’s an unmitigated fashion disaster…ugly, flimsy, see-through, ill-fitting, inconvenient, hard to tie or fasten, and often thoroughly humiliating in its, er, exposure.  I’ve searched for who is buzzing about this story so far, and it’s been highlighted on the (presumably official, but who knows) Twitter stream of French fashion house Givenchy – I’m thinking this is an RWJF first.

 

But this project was always designed to go deeper, and there’s a real vision and potential for change in health and health care that motivated Pioneer’s decision to support this work.  Indeed, it’s interesting to think about it in the wake of Clay Christensen’s visit last week.  The current patient garment is a classic, ubiquitous example of a job that is not getting done for patients or, as the NCSU research shows, care providers either.

 

Between the survey research and focus group findings at the heart of this project, we’ve learned some interesting things about the gown, how people feel about it, and its impact on care.  The upshot is that it’s never been about just looks: 

• 87% of caregivers felt the current gown sometimes interferes w/ administering IVs, catheters, feeding tubes or other devices. 

• 88% responded that the gown sometimes or always affects the emotional wellbeing of patients.  66% thought it sometimes or always affected patients’ physical well-being.

• 74% of nurses are involved in the gowning process; patients are not comfortable with how to put the gown on when confronted with it, so that even if they’re not seriously ill or impaired, they typically ask nurses for help.

• Some patients confessed that they may limit their mobility becaused they are concerned about being overly exposed in areas outside of their hospital rooms – people don’t just lie in bed anymore to get well. 

• Patients tend to use a second gown as a robe to cover them from the back, which effectively doubles the cost and time of collecting, laundering and stocking gowns.

• There is the perception that nicer, more dignified gowns may help patients feel better emotionally and be more active, boosting their prospects for and pace of physical healing and recovery.  Patients are struck by their loss of dignity and control in the hospital experience..."If I have this gown, I’m really sick.”

It seems that there are certain things in medicine that we do because they’ve always been done that way; such is the case with the patient gown.  It’s become institutionalized as part of the status quo and has gone unchallenged for decades.  It seems so simple and obvious to change the gown and bring it in line with 21st-century care requirements and patient needs and preferences – however, if it were that simple, it would have happened.  As NCSU’s Traci May Lamar states in the article, "We thought that it would be a much easier problem to tackle."

Sounds Good; How Do We Get There?

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

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

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

Sandy Pentland on Reality Mining: Phoning In the Data

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

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

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

 

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

 

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

 

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

 

photo credit: Julien Pacaud. 

Overshoots and Apps: Disruptive Innovation and Health IT

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

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

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

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

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

Talking Health Care with Clayton Christensen

We met with Clayton Christensen yesterday, the Harvard Business School professor who originated the concept of Disruptive Innovation. He’s been looking at the health care delivery system for some time now, seeking to apply his model of Disruptive Innovation in order to improve care and reduce costs.  That effort culminated in the release earlier this year of The Innovator's Prescription: A Disruptive Solution for Health Care, which he wrote with colleagues Jason Hwang and the late Jerome Grossman. It’s a fascinating read.

 

He’s a superb, thoughtful and gentle speaker.  If you ever have the opportunity to see him speak, take it.

 

We spent the better part of a day with him, so I’ll note only a couple of items that were raised.

 

The nursing shortage: Christensen notes that our training institutions do not have enough capacity to produce a sufficient supply of nurses.  At RWJF, we have been funding work to enhance and expand nursing faculty as a way to address that issue.  He says that in the same way in which many companies have begun to bring management training and development in house, larger integrated systems are beginning to insource the training of medical professionals.

 

Wellness: Christensen says one of the important things you need to understand when thinking about how to improve a product or service is what job the customer wants that product or service to do for them.  He explains this concept by talking about people who “hire” a milkshake for breakfast in the morning.  Understanding what job someone is hiring a milkshake for—and why the milkshake does that job better than a bagel or a bowl of oatmeal—helps you understand how to improve the product.  He suspects that “wellness” may not succeed as a way to organize the business of health care because not enough people want to hire wellness.

 

Disrupting public health:  We asked him about whether something that wasn’t market-based, but which was a public good—specifically, the public health system—could be analyzed and improved using the framework of Disruptive Innovation.  He said he’d never thought about it, but was intrigued by the challenge.

 

We also had a pretty robust conversation with him about health information technology.  Look for a post later from Steve Downs that discusses some aspects of that discussion.

 

Finally, one of our colleagues noted that RWJF sometimes feels like a player in an industry that’s ripe for disruption.  Any thoughts about what might disrupt our “business model” in philanthropy?

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!