Pioneering Ideas

Project HealthDesign and Patient-generated Data [Video]



Project HealthDesign is a national program of the Robert Wood Johnson Foundation's Pioneer Portfolio. This post originally appeared on the Project HealthDesign blog on June 26, 2012.

BY LIBBY DOWDALL, COMMUNICATIONS COORDINATOR, PROJECT HEALTHDESIGN NATIONAL PROGRAM OFFICE

 

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

We’ve been excited to see interest in patient-generated data grow throughout the course of the program. This month, Patricia Flatley Brennan, Project HealthDesign national program director, testified before the HIT Policy Committee’s Meaningful Use and Quality Measures Workgroups and the HIT Standards Committee’s Consumer Engagement Power Team at their Patient-generated Data Hearing. (Listen to an audio recording of the hearing.)

“Patient-defined, patient-generated data can be incredibly important in helping to understand the care process of individuals,” said Dr. Brennan. Watch the video above to learn more about Project HealthDesign’s outlook on patient-generated data.

A Conversation with Sam Faus at OSCON 2010

Last week we shared some of our experiences from this year’s O’Reilly Open Source Convention (OSCON). While we were there we got the chance to interview Sam Faus who spoke at the conference on Project HealthDesign’s Common Platform.  Check out the interview below and let us know what you think.

Tell us a bit about Project HealthDesign.

 

What is the Purpose of Project HealthDesign's Common Platform?

 

What makes Project HealthDesign's Common Platform unique?

 

Who - other than Project HealthDesign-funded researchers - will use the Common Platform?

 

Why is the Project HealthDesign Common Platform open source?

 

How can the open source community get involved in transforming the future of health and health care?

 

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

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

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

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

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

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

New Project HealthDesign Grantees Tackle ODL Challenges

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

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

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

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

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

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

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. 

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.

New RWJF Podcast Series Looks at the Power of Personal Health Records

RWJF's Larry Blumenthal, a Senior Communications Officer here at the Foundation, tells us:

Ralf Beach is an unlikely poster boy. At 70-years-old, he has survived a heart attack and quadruple by-pass surgery, has chronic lung disease and insulin dependent diabetes. He is also an acknowledged hypochondriac. Yet he is a shining example of the potential for bringing patient’s medical records online in the form of personal health records (PHRs).

As part of an experiment by researchers at the University of Washington, Beach is managing his diabetes and his health online. From an island in Puget Sound, he has access to his entire medical record. He delivers his blood sugar meter readings digitally – by-passing a three-hour trip to Seattle - and communicates with his doctors’ offices electronically. He’s a happy user of his PHR.

Ralf Beach is just one example of the potential for PHRs examined in a recently launched podcast series by the Foundation.

Advocates say PHRs could dramatically improve health care delivery, decrease medical costs and make it easier for all of us to manage our health over the course of our lives. With more than 130 million Americans – nearly half of the U.S. population – living with chronic conditions, the potential is obvious. To tap that potential, RWJF has been supporting, along with the California HealthCare Foundation, Project Health Design. Project Health Design has been working with nine multidisciplinary teams that are designing PHR-driven tools and applications that put patients’ needs and priorities first.

Of course, there are some challenges to overcome before PHRs reach that potential. There are concerns that PHRs shift too much of the burden of health care onto the patient. There are technology hurdles. Currently, there is no universal language or data format for health care information. Perhaps the biggest issue is concerns over privacy.

To delve into the potential — and the potential obstacles—RWJF worked with WGBH in Boston to produce this four-part series and the first two installments are up on the Foundation website, here.  The first segment features discussions with Project HealthDesign Director Patti Brennan, Project HealthDesign grantee James Ralston of the University of Washington, David Lansky of the Markle Foundation and Deborah Peel, founder of Patient Privacy Rights. You’ll even hear from Ralf Beach himself.

Segment 2 looks at some PHR work already underway at the Palo Alto Medical Foundation and Kaiser Permanente. The last two segments will be posted in the coming weeks; segment three digs into what Microsoft, Google, RevolutionHealth and others in private industry are working on. And the fourth and final segment features a roundtable discussion that wrestles with the intriguing potential of PHRs and the challenges ahead in implementing them. Please take a listen to this series and let us know what you think.

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!

Personal Health Records on the Hill

Last week, I joined the Project HealthDesign grantees in DC as they shared their projects on Capitol Hill. It was an opportunity for the grantees to brief members of Congress and their staff about personal health records (PHRs) and the importance of engaging patients in the design and functionality of PHRs. We've talked about Project HealthDesign before on this blog, so you may remember that Project HealthDesign focuses on the patient or end user. (Conversely, most PHRs available today respond to the needs of healthcare systems or providers.) I loved hearing from the research and design teams how the patients, through their testing of the applications, ultimately shaped the design and functionality. The patients gave feedback on icons, font sizes, and whether or not they would use specific functions. All of the researchers agreed that their feedback made for a better application.

But, back to the Hill where the nine project teams took their ideas to their Representatives, to their Senators and their staffs. A number of the research teams were joined by patients who spoke about the value of the research. While the intent of the visits was to brief those on the Hill about Project HealthDesign, we also got a briefing of our own. We learned that the staffers knew quite a bit about PHRs, including who the major providers are. One of staffers we met has her own PHR, and many of the staffers used a simple PHR application to track their physical activity: a pedometer! Recently, Blue Cross/Blue Shield gave out pedometers and launched a challenge to track steps. It was no surprise for me to learn that some of the congressional offices have a challenge within the challenge for the top step-getter in the office. During our visit, the staffers and members also raised questions about privacy, security, and how the applications would interace with existing Electronic Medical Records.

Since we've taken the pulse of PHR awareness on the Hill, I'd like to take the pulse of PHR awareness among our readers. Do you have a PHR? Are you doing something tracking your health on a daily (or just regular) basis?

Tomorrow's New Vital Signs, PHR-delivered

06/23 - Quick update: Jane Sarasohn-Kahn posted a nice commentary on Health Populi, in which she discusses this latest e-primer and the potential for PHRs to meaningfully track observations in daily living.  Thanks, Jane!

Project HealthDesign has released a new e-primer that explores the importance of observations of daily living (ODL) in moving toward next-generation personal health records and health management.  PHRs enable consumers and providers to incorporate routine health observations that go well beyond what data are captured at clinical visits.  Some are more obvious than others – blood glucose readings for diabetics, did I take the right pills at the right time today – but others may play an equally important role in pursuing health goals and managing chronic health conditions. 

Things like:  Does my chronic pain spike when the temperature dips below a certain threshold?  What effects might a particularly stressful month, with long hours at work and marginal sleep, have on my eating and activity behaviors, and hence my diabetes?  Can the fact that a 17-year-old with a chronic illness is regularly self-reporting his or her mood to be bad or sad play a role in the self-management of his or her disease?  And, if today’s pollen counts are really high, can my PHR device send me an alert in the morning to remember my inhaler, and then delete that point-in-time data capture because it may not be useful if conditions change tomorrow?

The ability to seamlessly capture such observations and show trends over time could add immense value for patients, who are looking to make the smartest decisions that will enable them to feel and function their best on a day-to-day basis.  And it might reveal important patterns to their health care providers, who rarely get a glimpse in to the potential impact that poor sleep, high stress or signs of depression can have on health outcomes over time. 

Project HealthDesign Releases Core Technical Requirements for PHRs

Today, Project HealthDesign released an advance set of core functional requirements for personal health record (PHR) applications of diverse types. What we’ve learned as the grantee teams have progressed is that, despite the differences in PHRs designed for, say, adults managing chronic pain, caretakers of children with cystic fibrosis or sedentary adults wanting to increase their activity, there are numerous functions they have in common. Things like wanting PHR tools that track observations of people’s illness experiences, or incorporate calendaring and reminder systems that prompt users to take medications or schedule appointments.

With support from our funding partner, the California HealthCare Foundation, Project HealthDesign enlisted the expertise of Walter Sujansky and his team at Sujansky & Associates to work closely with the grantees to develop basic functional building blocks that are useful to many, if not all, of their projects. Four target components—medication list management, calendaring, observations captured in the course of daily living and identity management—were identified as representing important building blocks for many PHR applications.

Given the diversity of the grantees’ PHR applications, we expect that this set of open-source functional requirements should be useful to the broader field. They can inform the providers of PHR platforms of potential services they can offer to enable more third-party application development. This will hopefully add something valuable to what the Microsofts and Googles will provide in the PHR space. The requirements also provide an opportunity for PHR application developers to join the discussion and add their perspective on what core services are needed to support their applications.

The “joining the discussion” piece is especially important to us. The Project HealthDesign team invites you to review the functional requirements and provide comments on how you think they might work. You’ll find more information on the requirements and the ongoing work of Project HealthDesign and Sujansky & Associates on the project's site, and a longer description of this new effort on the Project HealthDesign blog.

Next-generation PHRs surface new questions on privacy and ethics

Thanks to Lygeia Ricciardi for the following...

"Many of the posts on the Project HealthDesign blog directly or indirectly address the topic of privacy, which is of course a core issue concerning PHRs specifically and the electronic exchange of health information generally. If you haven’t already seen it, take a look at the Project HealthDesign E-primer, The Need to Know: Addressing Concerns about Privacy and Personal Health Records. It gives a good overview of the privacy landscape in this context, touching on topics including pending legislation and ethical issues.

Regarding ethics, Ken Goodman (who heads up Project HealthDesign's efforts to better understand the ethical, legal and social implications of future PHR directions) explores the implications of defining privacy as a “human right”—if our society does so, we free ourselves from a great deal of debate about protecting it. But where would the boundaries of such a right lie? The E-primer poses some difficult policy questions, such as whether health information collected by a patient in a PHR should be treated differently from medical record information under current regulations."

This E-primer asks how consumers may regard issues of privacy, security and control of their health data in an age of smarter PHR systems, and how policies and norms may shift as a result.  Will people be willing to share personal health information in order to gain greater efficiencies in their everyday lives?  We do it all the time now with personal banking and finance info.  Another question - how will the Myspace and Facebook generation treat the disclosure of personal health specifics in this era of all-about-me online identity? 

Thoughts?

Regarding ethics, Ken Goodman (who heads up Project HealthDesign's efforts to better understand the ethical, legal and social implications of future PHR directions) explores the implications of defining privacy as a “human right”—if our society does so, we free ourselves from a great deal of debate about protecting it. But where would the boundaries of such a right lie? The E-primer poses some difficult policy questions, such as whether health information collected by a patient in a PHR should be treated differently from medical record information under current regulations."

This E-primer asks how consumers may regard issues of privacy, security and control of their health data in an age of smarter PHR systems, and how policies and norms may shift as a result.  Will people be willing to share personal health information in order to gain greater efficiencies in their everyday lives?  We do it all the time now with personal banking and finance info.  Another question - how will the Myspace and Facebook generation treat the disclosure of personal health specifics in this era of all-about-me online identity? 

Thoughts?

Network-Centric Warfare and Health IT

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

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

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

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

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

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

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

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

HealthVault and Project HealthDesign

Microsoft today announced its release of HealthVault, which will serve as a platform for personal health records. Readers of this blog will know that Pioneer has been working for some time on the concept of personal health records and how best to engage consumers in the management of their health and coordination of their care. Recently, Project HealthDesign, one of our national programs that takes a leading role in exploring these issues, has given birth to its own blog, on which you'll find our team's, and the Project HealthDesign team's, thoughts on the implications of HealthVault and today's announcement.

It's promising to see major players like Microsoft, Google, Intuit and others joining the search for health solutions -- they're already so far out in front when it comes to designing products that meet consumers needs, and the health sector needs their talent and creativity.  Also notable is the fact that Health Vault offers an open platform approach and invites third-party device developers, IT designers and entrepreneurs to build on top of it. What this means is that consumers someday may have a far more diverse, vibrant array of PHR products and services to choose from in the marketplace. And, the way Project HealthDesign sees it, these tools and services can build off of the information in their PHRs to help them make smart decisions and take action to improve their health. Here's hoping that we see continued progress on this front.

Here is a link to Steve Downs's statement on Microsoft's announcement today.

Updates on Project Health Design

There are a few update items I have been meaning to post for a while now – here goes.

Project HealthDesign, which you have read about a good bit on this blog, has launched a blog of its own. Lygeia Ricciardi, a consultant with years of experience in the health IT and health policy realms, is resident blogger – look for regular posts on developments in the policy and IT spheres that influence what the PHR future will look like, and how user-centered design of PHR applications rolls out. Periodically, we’ll feature highlights from the conversation on the Project HealthDesign blog on Pioneering Ideas, and vice-versa.

Project HealthDesign National Advisory Committee member David Lansky, executive director of the Markle Foundation’s Personal Health Technology Initiative, was interviewed by Digital HealthCare & Productivity on why fragmentation across PHR products—and the systems they operate within—continues to undermine their potential for helping patients to really take charge of their health in a meaningful way.  Lansky says,

“We appreciate all these electronic tools but it doesn’t add up to an empowered consumer until the network environment permits information to flow into a tool that the consumer controls and manages.”

The full Q&A is available here.

In a related story, a company called MedeFile announced that its members can now enjoy access to their actual personal medical records, anywhere, anytime, on the new Apple iPhone. This trend is sure to spread as more consumers in the marketplace switch to Web-enabled mobile phones. Thanks to Matthew Holt and The Health Care Blog for sending this along.

Microsoft also announced more than $5 million is available to academic institutions that will collaborate with the company’s External Research & Programs group.  $1 million goes explicitly to exploring the use of cell phones as a platform for health care. 

The Tip of the Iceberg

One of the aims of Project HealthDesign was to turn the concept of personal health records (PHRs) on its head.  The idea was to start with end user applications (i.e. the tools people can use to manage their health) and see how they could build off access to one’s medical record rather than start with the medical record itself and see how it could be enhanced.  We anticipated that many of the applications our grantees would design would involve capturing data from end users in the flow of their lives, outside of their contact with the medical care system. 

In a previous post, I raised the question of what constitutes one’s PHR – what’s the relationship between the data in one’s “official” medical record and the data one generates outside of the care system.  The most recent design workshop, which brought our grantee design teams together, gave us a glimpse of the different nature of these two types of data. 

While most PHR offerings today provide an option for some “patient-sourced” data as a complement to the care-generated data that dominates the PHR, our experience at the workshop suggested that the “official” data is merely the tip of the iceberg.

Pioneering Practice, Not Just Ideas

Recently, the grantees of Project HealthDesign met for their first collaborative design workshop at the Vanderbilt Center for Better Health. The purpose of the workshop was to build a framework for these 9 grantees from across the country to work together as they develop their PHR applications. It was an intense 2 day meeting as the facilitators led the group through a process of deconstructing their initial proposals and emerging with a common perspective of product development and collaboration.

Generally, when health/health care funders initiate a program, the grantees are expected to work independently in their communities using the tools they find useful. The grantees may be brought together annually to share lessons learned, but I’ve never seen a process where the grantees start working together with a commitment to share and learn from each other. (Please share examples if you have them!)

This is a challenging process for some. Many experienced researchers have a prescribed way of doing their work, but this is a pioneering practice: Don't just work with with your colleagues but work with others on similar, but distinctive projects. Project HealthDesign is still in an early stage, and as we're testing the concept of PHR applications, we're testing this process. The early feedback is hopeful, though.

We talk a lot about Pioneering Ideas, but what are some of the Pioneering Practices in the business of health and health care?

PHRs: They’re Hot, They’re Sexy, But What Are They, Exactly? (Part 2)

In my earlier post on this topic, I raised the question of what constitutes a personal health record and then went on to suggest, as Patti Brennan has said, that we should free ourselves from the idea that each of us should ever have one repository that contains all of our health information.  Instead, I would argue that we should think of the personal health record as existing to serve a set of functions.  For example, knowing a person’s drug allergies is only valuable at the time of prescribing or administering a drug.  The record is only useful to the extent that you can retrieve and act on important information when you need it.

This idea – that the value of the record lies in the functions it supports, such as taking meds on time, saving money on health care costs, motivating behavior changes, or enriching dialogue with health care provider, than in the information itself – is the underlying premise of Project HealthDesign.  In my October 18 post on the program, I explained how we’d be funding different teams to work closely with different sets of end users to design and then build prototypes of personal health applications that help them manage a wide range of health challenges.  We’re asking these teams to assume that a PHR platform – core data and technical services that can support the varied applications – exists so that they can focus on providing the functions that users need, rather than having to struggle with all the thorny issues of how to deliver the actual personal health record (e.g. the meds list, allergies, visit histories – all the usual PHR data).

In talking about Project HealthDesign, we’ve often used the term “common platform” and there’s been a fair amount of confusion about what we mean by that term. I’d suggest that a PHR platform is really about how to record, gain access to, and share data – it’s not one monolithic standard PHR.  For example, data generated by a home monitoring device are likely to be maintained in a different place than claims records, prescription history or provider’s list of diagnoses).  The key is that any application be able to draw on these data as needed – and also be able to store data that can be called up by other applications that have a need for it.  So your claims-based PHR may contain your prescription-filling history, your primary provider’s EHR portal may hold your current problem list, and your iPod may have your running log.  This all works long as your cell phone (for example) can get at those data when you need them.

We’re asking the teams we’ve funded (see the Project HealthDesign site for a list) to use their design processes to identify the core PHR components that would support their designs.   My guess is that when they scope it out, it will look quite different than what most of us currently think of as a PHR.

In Other Blogs: Connecting Americans to Their Health Care

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

PHRs: They’re Hot, They’re Sexy, But What Are They, Exactly?

With apologies to Rolling Stone and Jim Morrison for the headline, it’s time to acknowledge the obvious: PHRs, or personal health records, are definitely in vogue – well at least among the health IT crowd, at any rate. I’ve just come back from the annual Connecting Americans to Their Health Care: Empowered Consumers, Personal Health Records, and Emerging Technologies conference (go here for the archived web cast of the plenary sessions), which we co-sponsored with the Markle Foundation and a number of HHS agencies, and among this substantially-sized (500 plus) crowd, PHRs are all the rage. We had representatives from consumer organizations, policy makers, PHR developers, researchers, and, in a sign of the times, some major tech industry players. Google, Microsoft, Intel, and Intuit (the Quicken and TurboTax people) were there and there in numbers. And among this crowd, there’s a lot of excitement and enthusiasm to move forward with PHRs. Rep. Patrick Kennedy, one of the keynote speakers, is even sponsoring legislation that would provide incentive payments to physicians for each patient of theirs who uses a PHR.

So we’re all in favor of PHRs, but it’s not at all clear if we’re talking about the same thing. Generally speaking, people refer to PHRs as online access to your medical record. It gets interesting and a bit confusing when one

National Health Policy Forum on Personal Health Records

The National Health Policy Forum has published an Issue Brief on personal health records that includes a description of Pioneer's work in this area.  You can read the Brief here.

Rethinking Personal Health Records

Project HealthDesign, the first RWJF national program to come out the Pioneer portfolio, had its proposal deadline in September and the response was tremendous. We launched Project HealthDesign as a way to stimulate more innovation in the area of personal health records. We used the tag line “Rethinking the Power and Potential of Personal Health Records” because we–and Patti Brennan, the national program director for Project HealthDesign–thought that the real power of a PHR lay not in assembling and presenting a person’s medical record, but in helping people transform that information into action. In other words, it’s not the record itself, but what you do with the record that matters. The basic construct of the program is a common platform–representing a person’s record and some common technical services like authentication – that is then layered with a variety of personal health applications (think Mac OS widgets as an example) that would help people manage certain health tasks.

A hypothetical example we often offer is an application that uses a person’s current medication list (provided by a common PHR platform) to crawl the web and find the lowest price sources for those meds (or there generics). That’s a simple example, but the point is that these applications should be diverse and numerous–reflecting the diversity of people’s health challenges. Having a common platform (or platforms) with stand application programming interfaces (APIs) would enable developers to create innovative applications without having to build a whole PHR infrastructure.  In Project HealthDesign, we’ll fund 8-10 organizations to work with end users to design and then build prototypes of a variety of personal health applications.  The grantees will also work together to develop requirements for a common platform that would support their designs.

So...getting back to the proposal deadline, we got...