Project HealthDesign Blog

Over the Counter PHRs?

Posted September 14, 2009 by Jason Rothstein (with Lygeia Ricciardi) 

Imagine my surprise the other day when I dropped by my local pharmacy and found—among the mints, candy bars, lip balm, and other impulse purchase items— a $20 USB-based wallet card designed for consumers to hold a variety of their own personal health record data: emergency information, physician numbers, medications, test results, diagnostic scans, and even living wills. Though this simple tool doesn’t measure up to the personal health record (PHR) vision articulated by Project HealthDesign: the PHR as tool for action that enables consumers to understand and significantly contribute to their own health and associated records—the discovery nonetheless prompts a few questions. Has the personal health record (PHR) concept reached some sort of tipping point? Are those of us who think and write about PHRs perhaps over-thinking what will capture consumers’ imaginations? Are PHRs just another medical commodity?

If current statistics are reliable, PHRs have decidedly not reached a tipping point. While the marketplace has introduced PHR products at a rapid pace (with perhaps 50 active products with considerable use today, according to Chilmark Research, actual adoption rates remain low overall. But the appearance of a product like this at the pharmacy counter definitely suggests that consumers increasingly make the connection between their digital and medical lives and want technology to solve real life problems.

Although in subsequent research, I found that these cards can connect to a limited online system for providing minimal extension of functionality and backing up data, the USB PHR card clearly does not embody the platform approach and emphasis on information definition, acquisition, and creation by consumers that Project HealthDesign researchers, policy analysts, and others have envisioned. Although it is for sale directly to consumers for their use, because it contains only traditional medical information about an individual and has such limited functionality, it is in some ways less a PHR than a variant of an electronic health record (EHR) for use by healthcare providers that happens to be carried by consumers in their pockets or purses, rather than shared electronically via a network.

Having said that, one can understand why this approach may appeal to some: these cards fit in a wallet, include only the information a consumer explicitly wants to share, don’t require navigating connections among different entities, and even have a certain ‘show-off’ factor that doesn’t involve revealing any private information. (“Hey, Charlie… look at this card!”) It would be a stretch (or at least, premature) to say that this product’s existence suggests that a more complex, networked approach to PHRs is headed in the wrong direction. But it does reinforce the notion that what appeals to researchers may not appeal equally to the public, and that convenience often trumps innovation, at least in the early days of technology adoption.

I have to confess that one of the first questions that leapt to mind upon seeing these cards was whether or not they were eligible medical expenses (purchasable with pre-tax dollars set aside for medical expenses through Flexible Spending Accounts or Health Savings Accounts). I was disappointed (but not surprised) to discover that they were not. But this opens up a whole other side to the policy questions surrounding PHRs and other related technologies. A cursory look at IRS rules suggests that as of this writing, the rules aren’t written with personal health software and some related technologies in mind (though of course, many other rules haven’t yet caught up to PHRs either). But shouldn’t they be? If PHRs and other personal medical software provide the benefits we believe they will, shouldn’t we make the case to treat all such tools as medical expenses like any other?

Part of the answer may be that many PHR services are now free… but it’s a chicken and egg kind of dilemma. At some point, many PHRs will probably move to a paid model, particularly for value-add services like ODL-tracking or enhanced storage and communication capabilities. Making the case that these costs belong in the same category as other medical expenses would help lend legitimacy to the category and further encourage consumer adoption.

There has been a lot of analysis of PHRs from a technology perspective, patient care perspective, and a regulatory perspective. But perhaps PHRs would benefit from a little more marketplace perspective. We tend to think that the main competition to PHRs is simply the status quo; it turns out we’re also fighting with Snickers bars for shelf space. 

HIEs are Beginning to Link Patients Directly to their Own Health Data

Posted August 18, 2009 by Lygeia Ricciardi 

Last month the eHealth Initiative (eHI) released its sixth annual survey of health information exchange and a report based on its findings, “Migrating Toward Meaningful Use: The State of Health Information Exchange.”

Among the findings is that the number of health information exchange initiatives (HIEs) continues to grow. According to the report, there are now at least 193 active initiatives, 57 of which are operational—an increase of nearly 40% over last year’s numbers. (Some HIEs refer to themselves as RHIOs or Regional Health Information Organizations.) An even greater level of growth is expected as a result of the stimulus package—the American Recovery and Reinvestment Act (ARRA).

Most HIEs are concerned primarily with the exchange of health information among health care providers, hospitals, pharmacies, and other members of the traditional health care system, such as health plans.

Interestingly, though, some—though still a small number—of HIEs have begun to include patients among those who can get access to electronic health information—in this case, to their own medical records. Fourteen HIEs have “technology available allowing patients to access their medical information,” according to eHI’s report. Most of these either have or are in the planning stages of implementing a patient portal.

What kind of access do these HIEs provide? In about half, patients can add “clinical” information to their records. Others only allow patients to comment on the existing record, or, in three cases, provide “read only” access.

Under the HIPAA Rules, physicians, hospitals, health plans, and other “covered entities” have long been required to give patients access to their own health information upon request, though until recently there were no provisions specifically requiring that such access be in an electronic form. (ARRA, which requires that patients be given electronic access by HIPAA covered entities that store the information electronically, doesn’t specify that the data be in any particular type of format.)

Independent personal health record (PHR) providers, by contrast, have platforms and services designed primarily to give patients access their own data for their own use—once they’ve figured out a way to get it into the PHR in the first place. But direct patient access to data though an HIE is still a fairly new development.

While the eHI report’s snapshot of patient access through HIEs is a far cry from Project HealthDesign’s vision of a world in which patients are able to both download their data from the health system in a “computable” form that lets them plug it directly into a variety of applications—and also send their own observations of daily living directly to their providers, it signals a positive step toward the kind of data liquidity on which that vision depends.

Though HIEs may never be the primary way patients access and download their data from the health system, any increase in patient access is a step in the right direction. See our previous discussion of this topic--and please feel free to weigh in.

A pocket full of ODLs

Posted July 27, 2009 by Jason Rothstein and Lygeia Ricciardi 

Easy, anywhere access to tools and health information is a key aspect of many Project HealthDesign projects. Grantees in the first round have explored ways to embed health-related functionality into a wealth of interfaces and devices, including smartphones, which are among the most common devices most patients encounter every day.

The use of smartphones to host health applications is compatible with the platform model Project HealthDesign promotes for PHR applications generally. Blackberry, Symbian, Palm, and Apple devices, among others, support application services, with an increasing number of health applications.

While Project HealthDesign doesn’t endorse smartphones over any other platform—or any particular type of smartphone over others—the Apple iPhone is currently leading the pack when it comes to apps.  There are now more than 60,000 iPhone apps, with the pace of development accelerating. Google’s Android operating system has 5,000 apps, and Nokia and Blackberry have roughly 1,000 each, according to Slate Magazine.

The iPhone may provide certain clues about where we’re headed in the mobile PHR space. And some of these clues may challenge our assumptions about how consumer use of personal health records (PHRs) will grow in the future.

The iPhone App store is full of apps that give users access to sophisticated online services: eBay auctions, Netflix rentals, Paypal transactions, banking, blogging, Facebooking… the list goes on. But curiously, the major PHRs don’t yet have much presence on the iPhone — or on any smartphone platform. Among the most common PHR platforms, only Google Health has a meaningful iPhone presence, through two third-party applications: 1.) Health Cloud, which delivers a view of the account holder’s PHR, somewhat optimized for the iPhone’s screen with limited functionality for users to add new information, and 2.) MotionPHR, which bills itself as a standalone mobile PHR that also integrates and syncs with Google Health.

A quick search through the iPhone app store suggests that most of the 1,500 or so health apps offered focus overwhelmingly on collecting, tracking, analyzing, and even sharing both traditional clinical measures of health and Observations of Daily Living (ODLs) — but not on integrating them with a more robust PHR. (ODLs are consumers’ or patients’ own measures of their health related to factors that they define as relevant. Examples of ODLs include sleep patterns, fluctuations in work-or home-related stress, and exercise/eating patterns.  These observations differ from patient capture of physician directed data, for example, in that they are often uniquely meaningful to the individual.

By far, the most common health and ODL tracking applications in the app store concern weight and nutrition: weight trackers, BMI calculators, calorie counters, and exercise loggers, in almost endless combinations. While some, like the stylish Weight Bot, try to appeal though simplicity, others enhance user experience with added features.

For example, Health Cubby combines weight tracking with exercise goals, simple nutrition records, and the added ability to connect with other people using the same system to provide reinforcement and incentive to stay on a program. Others, like SparkPeople Food & Fitness Tracker, and Livestrong.com’s Calorie Tracker add an iPhone interface to existing social fitness web sites. (It’s tempting to wonder if this social approach to weight loss and exercise goals might have potential for disease management too.)

Just as weight looms large in the imaginations of iPhone app users, so too does one potential consequence of poor weight management: diabetes. One of the more popular programs, Diabetes Pilot, first appeared on the Palm platform many years ago, and also integrates with a Windows-only desktop tool. But the iPhone platform has spurred the development of new applications like Glucose Buddy, an app with a heavy emphasis on combining ODL input (such as exercise and diet) with blood sugar levels to produce easy-to-understand reports for the patient. In the future, smartphones could also link with glucose management hardware to collect data and offer patient feedback, like the system envisioned by the winners of the 2009 DiabetesMine Design Challenge. 

Given the iPhone’s contribution to the explosive growth in smartphone use among women, it only makes sense that reproductive health apps make up another sizeable category. The app store features more than a dozen simple menstruation logs, including the popular iPeriod, and Period Tracker, which incorporate ODL fields to record indicators such as fatigue and mood.  Another several applications, like FemCal, expand on these features to emphasize ovulation timing and fertility, and track pregnancy test results. Still others track pregnancies themselves, like Pregnancy Calendar, which offers fields to record information both about maternal and fetal health indicators. (And then of course, after nine months, Baby Activity Logger helps new parents record ODLs on baby’s behalf. Can Fisher Price’s My First PHR be far behind?)

TheCarrot.com, an app that integrates with a site of the same name somewhat blurs the line between a simple ODL app and what many would consider to be a full-fledged PHR. TheCarrot.com combines a comprehensive set of trackers for clinical health indicators and ODL indicators such as mood, energy level, sleep, and anything else that fits into its journal format. TheCarrot.com also has additional features for disease management, medication management, and some types of lab results. It also incorporates sharing functions both via the web and through simple printable information sheets that patients can take with them to a doctor’s office.

 

A New Media Rallying Cry for Health Data Rights

Posted June 23, 2009 by Lygeia Ricciardi 

A Declaration of Health Data Rights posted yesterday night has gained significant attention from traditional media and the Web 2.0 world. Media coverage includes blogs by the New York Times, the LA Times and the Huffington Post, among others. 

The content of the declaration is a straightforward and concise rallying cry for better, easier access for patients to their own health data–and the freedom to use it in a variety of ways: 

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

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights."

The declaration was developed collaboratively by a group of 100 or so volunteers, including doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others "who share a common goal of greater health data availability.”

Endorsing organizations include numerous Health 2.0 companies, as well as Microsoft, Google, Dossia, WebMD, Partners Healthcare, the Center for Democracy & Technology, FasterCures, and TEDMED. As of this posting there are nearly 600 individual endorsements as well, many of which were made directly via Twitter.  

Part of what is interesting about the declaration, in addition to its content, is the mechanism of harnessing of social media to push for change and greater awareness. Endorsers are encouraged to follow the effort on Facebook and submit a video of themselves reading the declaration aloud on YouTube.

Disclosure: While the statements in the declaration would appear to contribute to the efforts Project HealthDesign supports, the Project has not officially endorsed the declaration, (though I have done so personally as an individual). 

Harnessing the Creativity of the Crowd for Healthcare

Posted May 27, 2009 by Lygeia Ricciard

Back in the 15^th century, the people of the City of Florence, Italy had a problem: they’d built the walls to support a massive Cathedral, but they didn’t know how to make a dome big enough to close off its 138 foot gaping hole. 

So they held a contest. Filippo Brunelleschi won, with a design that drew on Classical architecture (the Roman Pantheon), and added numerous inventions along the way, from the overall design (the outer dome resting on an inner drum, which eliminated the need for scaffolding from the ground), to a pulley system that sent the builders’ lunch up to them so they wouldn’t have to waste time climbing down. The dome of Florence’s “Duomo” Cathedral is still the largest masonry dome in the world.

Using contests to solve big problems is obviously not a new phenomenon, but it appears to be experiencing a resurgence, catalyzed by advances in information technology. Technology also lets groups collaborate better than ever before--and sometimes the line between competition and collaboration is fuzzy (the best solution to a given problem often “wins,” in that it is the one that gets adopted, but numerous people may help to evolve an idea or product through incremental changes).

Expanded availability of broadband and better Internet interfaces on mobile phones have helped developments like blogs, wikis, and social networking to take off (Twitter grew 752% in 2008). 

Though Brunelleschi had only one major competitor in his bid to cap off the Duomo, (artist Lorenzo Ghiberti, who was also from Florence), today contestants would likely come from around the world. Of course, the "wisdom of the crowd" is amplified in this century both by a greater number of people (over 6 billion) and higher rate of literacy--at least in most pockets of the world--than ever before in history.

The Pulse + Signal blog has a good post about the use of contests in the realm of health, especially public health. It highlights some examples, such as the Healthcare X PRIZE  (a $10 million prize for ideas about how to reinvent healthcare) and also the recent DiabetesMine Design Challenge. Indeed there are numerous examples of “crowdsourcing” health ideas. A few others worth mentioning:

•  The Obama Administration’s ongoing effort to engage the public in health reform 
•  Health-focused social communities, including whole sites (PatientsLikeMe) and parts of sites  (WebMD Community)
•  Open source health software development 
•  Open platform design, which will be an integral part of Project HealthDesign’s second phase of grants and is exemplified in the marketplace by the iPhone, HealthVault, Google Health, and Dossia     

With this increasing flow of ideas form the pubic, a growing  challenge is finding ways to cut through the volume to identify those that are most relevant, actionable, and likely to succeed in a given situation. Organized Wisdom’s health search service integrates the wisdom of the crowd (from online discussions, blogs, and fora) with those of “the experts.” Perhaps the crowd itself can help to find new and better ways to maximize the value of its own prodigious creativity. What do you think? 

Creative Ideas from DiabetesMine Winners

Posted May 18, 2009 by Lygeia Ricciardi

The blog and web site DiabetesMine, Amy Tenderich’s exploration of all things diabetes, just announced the winners of its 2009 Design Challenge, a contest with cash prizes sponsored by the California HealthCare Foundation.

Both the means and the ends of the contest are noteworthy. The means—an online contest open to the general public is, as Amy points out, an excellent example of crowdsourcing. Over 150 ideas were submitted over the last couple of months. Participants described their ideas via YouTube.

The end results are very imaginative. Most come directly from actual patients living with – and determined to enhance their quality of life with – diabetes. The contest underscores the point that patients or consumers living with a particular condition are exceedingly well placed to answer the question of what tools would work best for them.

In first place is a case for the iPhone that lets people with diabetes discreetly integrate devices such as a lancet and test strip with their cell phones, and at the same time allow them to collect and manage relevant data.

The winner of the “most creative” category is a learning toy for children. A teddy bear for diabetic kids that lets kids “normalize” their condition and practice managing it. Though I can’t say for sure, my own personal test group would suggest that this one has great potential. (My 4 year-old daughter, who  just received a doctor’s kit for her birthday, spent the entire weekend administering “shots” to me, friends, and various inanimate objects.)

The third category in which a prize was awarded is the kids category – won by a 13 year old boy who came up with a practical solution for keeping insulin pump tubing out of the way with a design similar to a garden hose reel. Congratulations to all the winners and entrants… perhaps some of you would like to apply to Project HealthDesign’s second round of grants? Click here to learn more about how you can be involved. 

HealthVault in Canada

Posted May 11, 2009 by Lygeia Ricciardi 

In case you missed it, TELUS, a leading Canadian telecommunications company, announced its agreement last week to license Microsoft’s HealthVault platform to develop Canada’s first consumer e-health platform.

While Project HeathDesign doesn’t endorse any particular platform or vendor above others (several have, in fact, expressed interest in working with the next round of grantees), it is in favor of a platform approach to PHRs that enables the development of a variety of consumer-oriented tools. It’s encouraging to see that model gaining ground globally. 

Growth of Home Monitoring Devices for Health

Posted May 2, 2009 by Lygeia Ricciardi 

Have a look at this BusinessWeek article on home monitoring devices for health. It points out that competition is heating up for market share for such devices in Western Europe, and wonders to what extent the $19 billion or so that has been allotted to health information technology in the Stimulus Package in the US may impact growth in this area. 

Also interesting is the associated slide show of products that have received Medical Design Excellence Awards for improving health and quality of life--like the keyboard without crevices in which bacteria can hide, and the smart hospital bed that weighs patients and adjusts their positions. 

 

The Doctor’s Role in a Health 2.0 World

Posted April 23, 2009 by Lygeia Ricciardi

One of the recurring themes at the Health 2.0 - Information Therapy Conference is the challenge of merging the new world of Health 2.0 – in which many patients create, share, record, aggregate, and manage their own data -- and the traditional health system. The theme is also closely linked to Project HealthDesign’s emphasis in its upcoming round of grants.

How an existing health organization absorbs or adapts to Health 2.0 depends on its unique characteristics and character. Yesterday at the conference we heard from healthcare organizations ranging from large integrated systems to small, independent clinics. Some are trying to fit Health 2.0 into their existing paradigms, while others are completely overhauling the way they do business.

A number of observations about incorporating Health 2.0 emerged. For example, according to James Hereford (Group Health), you have to deliver to patients only information that is relevant to them, and do so in a way that also makes sense to doctors--both from a clinical and a workflow perspective. It’s also important to provide incentives to share and use information. Perhaps most of all, whatever you do must strengthen rather than undermine trust in the patient-doctor relationship.

How might Health 2.0 change that relationship? For one thing, in the past, doctors functioned as repositories of a significant proportion of health knowledge. But with the volume of new research generated today, it’s impossible for any individual to keep up. ePatient Dave (patient, blogger) relayed some testimony by Don Lindberg, Director of the National Library of Medicine, who said that even if he read two medical journal articles each day, at the end of one year he’d still be 648 years behind in the medical literature. 

So of course, combining that point with Health 2.0 resources, many patients have begun to know more about their particular health conditions than their doctors do. Which begins to shift the traditional patient-doctor relationship and power dynamic.

What should a doctor’s role be? Obviously a key part is providing clinical care or guidance, especially in response to particular health events or conditions. Another part may be leading or managing a team of other caregivers. With regard to health knowledge, Danny Sands (Cisco and Beth Israel Deaconess Medical Center) says doctors should know how and where to find information, and must freely admit—whether to colleagues or patients—when they don’t know it. Doctors and patients can seek and interpret information together, and doctors can help patients understand how generic facts apply in an individual’s particular case. An important aspect of information gathering is, in fact, collecting and contextualizing information about the individual patient.

Along the same lines, Jamie Heywood (PatientsLikeMe) observed (quoting an unnamed source), that the patient is the CEO of his or her own body, and the doctor is the consultant. The doctor’s job is to  support patients in caring for themselves on an ongoing basis. Several other people emphasized the extent to which most things that impact patient health, such as behavior choices related to diet, exercise, compliance, smoking, etc—take place outside the formal health system and are under the control of patients themselves—so doctors need to help point people toward the tools that can let them succeed in maintaining their own health on an everyday basis. Another comment by Jamie was about the responsibility of doctors in balancing the demands of individual patients and population health.

Susan Edgman-Levitan (Mass General Stoecle Center) emphasized yet another aspect of the doctor role – doctor as healer: a person who cares deeply about the patient and contributes to health not merely through clinical knowledge, procedures and techniques, but with kindness and compassion.

While on the one hand there are elements of truth in all of the observations above, on the other, as Paul Wallace (Kaiser Permanente & Ix Center) pointed out, we have to keep in mind that no one doctor can be all things to all patients.

In my opinion, it’s important to consider the doctor’s role in the context of a much larger care team, which includes not only other clinical providers, but patients and the teams they assemble to support themselves, too – including families, friends, and, increasingly, members of virtual communities. How do you think the advent of Health 2.0 should impact the doctor’s role?

 

A modular, open platform for all of healthcare—not just PHRs

Posted March 26, 2009 by Lygeia Ricciardi

Today the New England Journal of Medicine posts a free online article entitled No Small Change for the Health Information Economy, by Kenneth Mandl and Isaac Kohane. It asks how healthcare can best take advantage of the unprecedented $19 billion in the stimulus package directed toward the adoption of health information technology.<

In response to the question, the authors sketch a vision—for all of healthcare—very similar to the model Project HealthDesign has long supported for a personal health record (PHR) architecture. (See, for example, Director Patti Brennan’s discussion of the “common platform” and the project’s release of functional requirements for PHR “building blocks.”)

They highlight the importance of flexibility, interoperability, and a platform approach based on open standards that enable anyone to create applications that can be interchanged or linked together easily. Such openness allows the market to address niche needs and also promotes competition for well-designed applications. According to Mandl and Kohane, this kind of architecture could benefit clinical care, public health, and research—as well as PHRs.