Pioneering Ideas

A Declaration of Our Rights to Health Data

If you enjoyed Steve Downs’ recent post about the Open Notes project, here’s a group with related interests. Health Data Rights, a group of organizations, corporations and individuals, is calling for a people’s right to have and share health data. They assert, in part, that -

“We the people:

• Have the right to our own health data;

• Have the right to know the source of each health data element;

• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form; and

• Have the right to share our health data with others as we see fit.”

The group includes Dossia, GoogleHealth, FasterCures, Microsoft and PatientsLikeMe. The rights have been endorsed by Adam Bosworth, David Kibbe, Esther Dyson, Tim O’Reilly, Steve Case and nearly 300 other individuals.  If you’re interested in learning more, here’s their site: http://www.healthdatarights.org/

The Pioneer Portfolio team and the Robert Wood Johnson Foundation have been interested in liberating health data for a long time, as we think that liberated data enables innovation.

If you’re interested, you can follow the conversation about Health Data Rights on Twitter.  

Mix of things to check out

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

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

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

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.

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. 

Power Meters for Health?

Google has established itself as a player to watch in many arenas, including the field of personal health records. We’ve written about Google Health on this blog before, but today I’d like to discuss another innovation by Google that may have significant import for anyone working on personal health records.

Google PowerMeter is a beta (or trial) program underway at Google.Org, the company’s philanthropic arm. It is built around the premise that one component of the energy crisis is a lack of feedback connecting decisions and energy costs. Consumers heat their homes, use appliances, turn lights on and off, and at the end of the month they get an energy bill. Not only are energy bills often confusing and opaque, they do not contain any information about what contributes to fluctuations (or escalations) in cost. According to Google, this lack of transparency presents an opportunity to change behavior through awareness and information.

How much electricity does it take to power my vacuum? How much will I save if I lower the thermostat one degree? Google PowerMeter aims to deliver answers to questions like these to consumers in near real-time, coupled with suggestions for how to conserve energy and save money. Google also plans to analyze this data for trends and insights – such as whether running the dishwasher at 2am as opposed to 7pm could reduce energy consumption and lead to cost savings.

Does any of this sound familiar? Much of the impetus behind Project HealthDesign’s work on personal health records is that decisions about health-related behavior often rely on delayed and disjointed feedback (e.g. determining the relationship between exercise, diet, and chronic pain). Google PowerMeter’s efforts to decrease energy consumption through awareness and instantaneous feedback parallel Project HealthDesign’s key objective: empowering patients to make healthier choices by providing them with tools to visualize, interpret and manage their health information.

 

The next phase of Project HealthDesign funding will explore how health data from everyday life—observations such as diet, sleep, exercise levels, pain episodes and even moods—can be collected, interpreted and integrated into the clinical care process.

2nd-Round Project HealthDesign CFP Targets "Observations of Daily Living"

RWJF launched Project HealthDesign in 2006 to stimulate innovation in the development of personal health record (PHR) systems by transforming the concept of PHRs as data collection tools to PHRs as a foundation for action and improved health decision-making.

 

The first round of funding resulted in a range of applications that addressed self-management tasks ranging from a cell phone-enabled medication-management system to a personal digital assistant that collects and supports self-reported pain and activity data and provides a fuller picture of patients’ everyday chronic pain experiences.

 

In the second round, RWJF will award up to $2.4 million in grants to as many as five grantee teams for 24-month demonstration projects that will assess and test how “observations of daily living” — data on experiences such as meals, sleep, exercise, pain episodes and even moods — can be collected and interpreted such that patients can take action to better manage their health and clinicians can integrate new insights into clinical-care processes. 

 

Brief proposals are due on June 3.

 

Lygeia Ricciardi provides more details over on the Project HealthDesign blog.

An App Store for Your EHR? Why Not?

Up on the Project HealthDesign blog, Lygeia Ricciardi calls attention to Ken Mandl and Zak Kohane’s perspective article in the New England Journal on the need for a flexible information infrastructure in health care.  In the article, Mandl and Kohane offer a simple prescription – that the infrastructure be designed as a platform upon which many competitive, substitutable applications can be offered.  They cite the Apple iPhone as an example where this has worked successfully:

 

“The platform separates the system from the functionality provided by the applications. And the applications are substitutable: a consumer can download a calendar reminder system, reject it, and then download another one. The consumer is committed to the platform, but the applications compete on value and cost.”

 

The idea of separating the infrastructure from the applications has been vital to innovation in the computer industry and was the key to our approach on Project HealthDesign (see my post introducing the program).  We were focused on personal health records, but the notion of applying the idea to the design of the infrastructure that supports the business of health care is getting some attention.  Peter Neupert, who leads Microsoft’s health solutions business, has been calling for this, which should be no surprise since Microsoft knows full well the value of a software platform.  The National Research Council (NRC) released a report in January on Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions, in which they also recommend that health care institutions “insist that vendors supply IT that permits the separation of data from applications.” (Disclosure:  Robert Wood Johnson Foundation was a partial funder of the report).

 

This discussion comes at a critical time for two reasons.  First, the American Recovery and Reinvestment Act includes approximately $19 billion in investments in health IT, so to the extent that the incentives work, we’ll see a tremendous amount of investment in health IT over the next several years.  Second, and perhaps even more importantly, we are on the brink of health reform, which suggests that health care institutions need to be poised for changes in the ways that they work.  Mandl and Kohane make the point that macro trends such as the aging population and work force shortages will put pressure on the system to adapt and therefore the information infrastructure needs to be sufficiently flexible.  The NRC committee, led by Bill Stead and shepherded by Herb Lin, noted that

 

“IT is often implemented in systems in a monolithic fashion that makes even small changes hard to introduce ...IT applications appear designed largely to automate tasks or business processes”

 

and recommended that

Seeking Your Input - Project HealthDesign's Next Stage

Over on our sister blog, Project HealthDesign, Steve Downs is describing RWJF's/Pioneer's plans for the next phase of the Project HealthDesign national program and its vision for the future of personal health records.  RWJF just awarded a $5.3 million renewal grant to Project HealthDesign, and Steve and the program staff want to share insights on its future directions and get your best thinking on some critical questions.  For one thing, we'll be looking at how to integrate and deploy next-generation PHRs and related data captures in to clinical care processes.  A new call for proposals should come out later this spring -- to be notified of its release, click here.

As Steve says, "I wanted to share our thinking on the program with you for two reasons: to give anyone interested in participating the chance to start thinking about these challenges and start lining up potential collaborators; and to get some ideas on a few of the issues we’re working through."  The questions: What is the potential to integrate information on "observations of daily living" - how you slept, what medications you took, what you ate, when and how you exercised, how you felt - into conventional health care processes?  What is the role of PHR platform services like Dossia, Google Health or Microsoft HealthVault?  Please take a look - Steve and all of the Project HealthDesign team are interested in your thoughts and suggestions.