University Offers Students Free PHRs

Posted February 28, 2009 by Lygeia Ricciardi 

As reported by Health Data Management, the Indiana University Health Center in Bloomington is offering its students free Personal Health Records (PHRs). The PHR software is by NoMoreClipboard.com and will enable students to import data to and from the university health system, as well as sharing with providers from outside the system. The data is also longitudinally portable--students will be able to keep the PHR after graduation. 

The Color of Pain: Helping Patients and Doctors to Communicate Better

Posted February 26, 2009 by Lygeia Ricciardi

Dr Roger Luckmann, a primary care internist who specializes in chronic pain management, had a patient encounter that significantly influenced his thinking. The patient, rather than trying to describe his symptoms primarily in spoken language, brought in an elaborate and colorful calendar he had devised to chart the types and relative levels of pain he experienced throughout each day.

Roger was impressed. Thanks to the calendar, he was able to grasp that patient’s experience unusually quickly and with a high level of subtlety. This kind of communication is important to help doctors and patients to discover patterns and devise effective treatment and management strategies.

Thinking about how similar visual representations could be used by other patients led Roger to apply for a  Project HealthDesign grant. Today, he and his partner Amin Vidal have designed a PDA-based input tool that links to a version of a visual calendar for patients with chronic pain. Patients enter data about their pain and activities into the device at regular intervals through a customized interface that cuts data entry to less than 60 seconds.

The online calendar,  which patients and doctors can access, aggregates the patient’s observations and translates them into useful patterns. Roger has found that this set of tools, like the paper version that helped to inspire it, has dramatically improved his ability to communicate meaningfully with his own patients—a task which, as you might imagine, can be challenging given a subject as abstract as pain.

Roger and Amin speculate that their tool may hold particular value in cases in which providers and patients don’t speak the same primary language. Currently in such cases an interpreter is present for medical encounters, which ads significant time and cost and increases the risk that a few details will be lost (ever played the game “telephone”?). They are going to experiment with offering the tool in Spanish or Vietnamese. While it may not eliminate the need for an interpreter, it may make the process of communication easier and more accurate.

As for other plans, the team will soon do a broad field test to fine tune their tools, and is looking at opportunities to work with companies who may be interested in developing such products commercially. If you are interested, I’d be happy to put you in touch with Roger and Amin…. 

In-Body Sensors to Monitor Health

Posted February 20, 2009 by Lygeia Ricciardi 

Check out this post on the Intelligent Medicine Blog -- a relatively new blog focused on how embedded computer and sensor technology is redefining and revolutionizing health care.

The post talks about a new device that inserts a sensor into a patient’s skin. Unlike an embedded device or chip, it can be quickly removed.

Such devices can continuously monitor health. As blogger David O'Reilly says, “continuous health monitoring will play an important role in advancing us from Health 2.0 (individual-focused online health empowerment and collaboration) to what we can call Health 3.0 (direct, automated connection between an individual’s sensed physiology and his Health 2.0 tools and communities).”

Interesting. Whether or not you agree with this particular definition of Health 3.0, these types of devices are certainly part of the puzzle of helping patients and their care providers more seamlessly monitor observations of daily living (ODLs) and apply them in useful ways. There are also some thoughts in the post about how these kinds of  technologies are likely to continue to evolve.  

Collecting Observations of Daily Living

Posted February 16, 2009 by Lygeia Ricciardi 

To shed further light on Observations of Daily Living (ODLs)--a central theme of Project HealthDesign’s work, present and future--I interviewed grantee Stephanie Fonda, PhD, a Senior Research Scientist at the TRUE Research Foundation.

Stephanie is the Principal Investigator of a project on diabetes self-management. She leads a team that has developed an application to help patients with diabetes to track, analyze, and alter their diets, physical activity levels, use of medication, and moods. ODLs are measures that patients record themselves—for example, an individual’s log of foods eaten over the course of a day.

A few observations from Stephanie about patients’ collection of their own ODLs: 

Data collection is incredibly burdensome – This is perhaps not surprising when you consider number of types of data that would be helpful to track and analyze. As Stephanie and some of the patients she’s worked with point out, if you track every type of data pertaining to diabetes the experts say would be useful, data collection could become your full time job--and the same applies to many other health condition. This basic concern is a motivation for many of Project HealthDesign’s grantees—who are working to make data collection less burdensome for patients so they can avoid burnout.

Data collection can be embarrassing – Reading blood glucose levels in particular is something that many diabetics find embarrassing—some would even say taboo—in public. It generally involves pricking a finger or other body part to collect a drop of blood for analysis with a blood glucose meter. Some patients go to great lengths to keep the process private, hiding in bathroom stalls or other awkward (and potentially unsanitary) places. While certainly not all diabetics are embarrassed by reading blood glucose levels publicly, collecting ODLs can in general be awkward: for example, many people don’t want to photograph or write down the details of their meals while their dining companions are just eating.

Data collection can be emotionally fraught – While most patients Stephanie works with have the desire to monitor fluctuations in their basic health measures, the very act of data collection can increase stress levels. For example, she told me about a continuous glucose monitor, a device used by some patients that eliminates some of the hassle and potential embarrassment of the traditional meter. The continuous glucose monitor relies on an under-skin sensor that regularly transmits readings to an outside device such as a PDA. Most alert the patient if blood glucose levels drop too low with a buzzer or alarm. While these warnings can be helpful, they can also be upsetting, particularly if they go off in the middle of the night. A minute-by-minute reading of your blood glucose levels can also feel intrusive and distracting rather than freeing—for some people it is hard not to become obsessively focused on it. 

In her keynote address at the Project HealthDesign Expo last fall, Amy Tenderich, the blogger from Diabetes Mine, made some observations similar to Stephanie’s about the burden and embarrassment of living with diabetes and collecting ODLs. 

These observations beg a couple of interesting questions. For example, as Stephanie asks, is it ideal or even useful to track ODLs all the time, or just at certain intervals? Perhaps it's better to do so only when you are traveling, or at other points when you depart from established routines. Appropriate intervals for collecting ODLs are likely to vary in part based on different health conditions and types of observations.

On the other hand, the fact that recording behaviors and environmental factors causes you to be more aware of them is not necessarily a bad thing. If you know you will have to record your actions, you are more likely to run the extra mile (and skip the extra cupcake). Making the process of data collection for ODLs too seamless could deprive patients of the cognitive processes of better understanding and reshaping their own behaviors.

In addition to learning about the best ways to collect ODL data, Stephanie and her team are working on ways to present data analysis meaningfully. The challenge involves not only finding appropriate media and formats to share information (via video, audio, etc), but also perfecting the tone of communication, which, according to Stephanie, is very important to the patients she’s worked with. While some like to be praised for “good” behavior, others prefer to be warned or admonished in connection with “bad” behavior. Much remains to be done in understanding and meeting the unique needs of individuals regarding ODLs.... Please let us know if you have particular questions or topics you would like to see addressed. 

A Balancing Act: Kaiser considers how to use health data generated by patients

Posted February 9, 2009 by Lygeia Ricciardi 

In describing the next phase of Project HealthDesign, Steve Downs emphasized the importance of health data that patients generate themselves through their own observations of daily living (ODLs), and the need to integrate ODLs into conventional health care processes. ODLs can include personal information on exercise, diet, medication, sleep patterns, or anything else individuals think is relevant.

To get a sense of how integration of ODLs is currently being addressed in the field, I spoke with Jan Oldenburg, Senior Practice Leader in the Internet Group at Kaiser Permanente. Kaiser is an integrated health care delivery system with 8.7 million members. It’s also a recognized leader in the use of personal health records (PHRs)—more than 2.4 million Kaiser members have signed up for the “My Health Manager” PHR website, which also boasts impressive usage statistics.

According to Jan, while there are opportunities for patients to enter their own data into the PHR, providers (in most cases) are not currently using that data. Kaiser encourages patients to collect their own data because this kind of involvement leads to a sense of empowerment, control, and enhanced understanding of personal health. But how best to share that data with health care providers is tricky.

One concern is liability. Let’s say a patient enters symptoms into her PHR that are consistent with a heart attack--but her physician does not see them. If the patient goes untreated, is the physician liable for not taking action? What if the data missed by a provider is about a condition that is less acute but might, nevertheless, alter a diagnosis? Kaiser’s research to date indicates that patients assume their care team will review anything they enter into their PHR—whether or not this is actually the case. As a result patients may think they are adequately communicating and fail to reach out via phone or in an office visit.

The liability concern is closely linked to worries about workflow and resources. Healthcare providers have notoriously limited time allotted per patient. Can they be expected to wade through potentially large volumes of information about diet or mood–or whatever a patient may choose to record? And will looking at patient-generated data require a disruption in workflow, (for example, if it means logging into a separate account)? 

Some providers also fear that patient generated data may be inaccurate, and don’t want it to be part of the official clinical record. As Jan points out, though, in the current (mostly non-digital) healthcare environment, providers have to make decisions all the time about how to handle patient generated data. In office visits patients verbally (or through a written intake form) report on medication compliance, exercise, symptoms, their family health histories, and other aspects of their health. In these cases, too, providers have to use their own judgment to decide which information is most likely to be accurate and relevant based on specific circumstances. 

Given that Kaiser Permanente, an integrated system and one that is especially open to technology and patient empowerment, is struggling to figure out how to integrate patient generated data, it is safe to assume that other systems and smaller practices are, for the most part, even farther from doing so.

I hope many of these problems will eventually be worked out; I remember hearing some of the same worries from provider organizations about patients using email six or seven years ago—concerns that have, for the most part, not borne out because patients and providers developed a joint understanding over how and when to use email (though of course many still do not). In addition, many of the issues Jan identified would be mitigated by the development of better analysis and decision support tools (as called for by a recent IOM report) to help both providers and patients wade through increasing volumes of information to discover useful patterns. 

IBM, Google, and Continua Health Team Up to Move Data into PHRs

Posted February 5, 2009 by Lygeia Ricciardi 

Today the three partners announced new software that helps personal health information to flow more freely from devices used for patient monitoring, screening, and evaluation directly to personal health records (PHRs) such as Google Health.

Since the data is automatically streamed from health devices--the kinds of applications being developed by Project HealthDesign--individuals won’t have to enter it by hand, which makes it more likely that people will actually use PHRs, and that the information in them will be accurate.

Once the data is in a PHR, a person can choose to use it on his or her own and/or share it with healthcare providers. But the greater ease with which the data can now move to a PHR is an important prerequisite for making the data truly useful. The new software is based on open standards and is freely available to the public.

Going Forward with Project HealthDesign – We'd Like Your Input

Posted February 2, 2009 by Steve Downs 

Recently the Robert Wood Johnson Foundation’s trustees approved a new, $5.3 million investment in Project HealthDesign. We expect to release a call for proposals later this spring for a new round of grants, but in the meantime, I thought I’d share both the program’s new direction and some of the issues we’re wrestling with, as we nail down the details.

Along with the California HealthCare Foundation, we kicked off Project HealthDesign in 2006 with a couple of simple ideas: 

1. That the power and potential of personal health records (PHRs) lay not so much in providing people with the ability to view their medical records but in enabling a whole host of innovative 3^rd-party applications to build on the data contained in people’s medical records; and
2. That if you put the user at the center of the design process, PHRs would look very different than the products that were on the market at the time.   

We funded nine interdisciplinary teams to work with end users (i.e., people) to design and eventually build prototypes of PHR applications that ranged from tools for medication management (one aimed at seniors and one at children)  to a method for tracking a teenager’s mood (scary, huh?) and assessing how it affects their chronic condition.  

One of the outcomes of these user-centered design processes was an increasing focus on collecting data that are not typically part of one’s medical record but rather come from the flow of everyday life.  We tagged data on people’s diet, exercise, sleep, pain, medication usage and many activities or events “Observations of Daily Living,” or “ODLs.”  It turned out that in order to provide people with the actionable feedback they sought, the applications needed to collect these ODLs.  (For further reading, we put out a short e-primer on ODLs last summer). 

For the second stage of Project HealthDesign we will explore the potential of integrating data from ODLs into conventional health care processes. The first stage convinced us that there’s real potential for many people to use ODLs to help them make everyday health and lifestyle decisions, and we’ll continue to explore that potential in the next funding round.  What’s less clear is how to integrate the data from ODLs into the health care delivery system.  Clearly most physicians will not look at table after table of raw data for each patient in order to gain insight into the patient’s condition.  Nor will most patients subject themselves to time-intensive or highly obtrusive data collection processes. So we will be seeking both innovation and ultimately insight into these two challenges:  1) how to collect data on a wide range of ODLs in ways that are personally sustainable (i.e., people will actually do it)? And 2) how to extract clinically useful information from those data and present it to care providers in ways that will fit into their workflows and deliver value?

As I mentioned earlier, we’ll be releasing a formal call for proposals in a few months, but 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 grants would likely fund teams to do small trials with real patients and real care settings. In these trials, teams would develop solutions where they would: collect ODL data of various types on people with multiple chronic conditions; store those data in a manner that enabled consumer control; offer applications that use the data to provide feedback to the individuals; process the data for use by physicians and other providers; and integrate the presentation of the data into the providers’ work flow.  The trials should answer the basic questions of whether both people and their providers would use the solutions and whether they affected their overall behavior and practices. In other words, were people better able to manage their health day-to-day and did providers find the information valuable in the sense that it changed the way they practiced?  We envision that teams will need to include medical practices or other care settings, 3^rd-party application developers and/or device manufacturers, PHR service providers, researchers and others.

As we develop the specifics for the grant competition, we’d love to get input on a few things:

• Intellectual property and the role of for-profit companies. Since we’re focusing on how to integrate information from ODLs into today’s care system, we’re very interested in leveraging the many excellent products and companies that are out in the marketplace, rather than building from scratch.  At the same time, we are, by our nature as a foundation, restricted to making grants that have “charitable purposes.” So if a for-profit company were to get grant money from us to improve its product, we would have trouble making the case that the grant is for a “charitable purpose.” Typically, we resolve these issues by negotiating charitable returns like discounted pricing for nonprofits or contribution of the intellectual property to the public domain. We’re looking to strike a balance in this program: we’d really like to get participation from the best companies working in this area, but we might have to put some strings on the IP, like requiring open source release of code that’s funded by the program. There’s a programmatic reason to go with open source as well – there’s value in having building blocks that are unencumbered. As we saw in the first round of Project HealthDesign grants, many ODLs are relevant to multiple conditions and thus could support multiple applications (e.g. physical activity tracking was relevant to applications around increasing physical activity, managing diabetes, and managing chronic pain). But some companies might not want to participate under those conditions. Does anyone have any thoughts on how best to strike this balance between encouraging participation from for-profit companies and ensuring that our funds meet the charitable purpose test?    


• The role of PHR platform services. Through Project HealthDesign we have been advocating for a three-layer model of PHRs: 1) PHR applications that contribute to and build off data stored in 2) PHR platform services (e.g. Dossia, Google Health, HealthVault) that draw data from 3) data sources, such as physician offices, pharmacies, etc. involved in health care delivery. For this round of grants, we have to decide what restrictions, if any, we should put on how ODL data are stored. Certainly, we would require that the consumer control access to the ODL data. But should we require the use of a separate PHR platform service, that can support multiple applications, or could an application that collects and use the ODL data simply store the data itself and make it available (with the consumer’s consent) to the health care provider? And if we do require a separate PHR platform service, should we require that it is commercially available? 


• Bringing partners together.  As noted before, we envision that teams will need to include a variety of different organizations – medical practices, application developers, device manufacturers, PHR service providers, researchers and others. Beyond reaching out broadly to the different groups to make sure they’re aware of the opportunity, should we try to facilitate these partnerships actively? For the last round, we created an online forum space for potential partners to connect, but it resulted in only one viable partnership. Are there better ways we could help potential partners find each other and come together, or should we assume that teams will self-organize pretty well?       

Thanks in advance for any comments – we’d really like to hear from you.

PHR Related Events in February

Posted February 1, 2009 by Lygeia Ricciardi 

February 2-5, 2009 – TEPR+: Exploring Compelling Options for Smarter Healthcare

The 2009 TEPR+ Conference is a health IT conference for clinicians, healthcare executives, and healthcare technology and management professionals seeking the most innovative, cutting-edge and practical solutions for today's related issues. The conference will be covering topics relevant to helping physicians and other clinicians select the right EMR system for their practice as well as showing current EMR users how to get the most out of their system. It typically showcases PHRs, too. This offers an extensive education program with a variety of tutorials and sessions targeted at physicians, hospital executives, and health IT professionals.  (Palm Springs, CA)

February 18-20, 2009 – Wellness Rewards Congress

The conference will provide the latest market-based intelligence and insight into improving the personal health of individuals through incentives and reward programs. This is most useful in the corporate setting where studies have shown increased productivity with a healthy workforce. From industries related to worksite wellness, lifestyle management and health coaching, the Wellness Rewards Congress seeks to inform regarding the latest trends and innovations. (Phoenix, AZ) 

February 22, 2009 – American College of Medical Informatics (AMCI) Winter Symposium

The demand for workers who understand health care, information systems, and technology is growing rapidly. The symposium (for fellows only) continues as the premier forum for education in clinical informatics, clinical research informatics, public health informatics, and translational bioinformatics. In conjunction with the larger annual symposium, the Winter meeting brings together an amazing network of informatics experts that span the spectrum of foundations and applications of informatics. Patti Brennan, Director of Project HealthDesign will be among the speakers at the event. (St. Pete's Beach, FL)

February 23, 2009 – The Fourth MINING Symposium: Optimizing Electronic Health Records (EHRs) to Support Nursing Practice and Patient Care

Held at the Mayo Clinic, the purpose of this symposium is to provide the latest in theory, information, and examples of system optimization for application in work settings. Most healthcare organizations are well on their way in the implementation of EHRs. In many instances nurses have played an integral role in the analysis, design, implementation, and evaluation of these systems. A great deal has been learned along the way; however, nurses in all roles are asking for more out of their systems. The systems need to be more intuitive, streamlined, better support patient care, and deliver information in the form or core measurements and on-demand aggregate data. (Rochester, MN) 

February 23-24, 2009 – 2nd Annual Leadership Summit on Consumer Connectivity

The World Health Care Congress 2nd Annual Leadership Summit on Consumer Connectivity offers providers and insurers strategies to revolutionize health care through the integration and adoption of ehealth applications and personal health management tools. Web-based technologies, including PHRs, physician/patient portals, social networks, and online decision support tools shift the power in health care to consumers and offer solutions to accelerate quality initiatives, increase access and help control escalating costs. The conference will focus on evaluating how PHR adoption could substantially save health care’s bottom line and how to capitalize on methodologies for establishing a long-lasting, competitive edge in a tough economy. (Washington, DC) 

February 24, 2009 – Mayo Clinic 18th Annual Nursing Research Conference: Informatics Driven Research

This conference will focus on research related to the field of clinical informatics. Patti Brennan, Director of Project HealthDesign will be among the speakers exploring the topics of using electronically available data and information, terminologies, models, telehealth, decision support, human factors, and roles and methodologies that support informatics driven research. The goals of this conference are to: 1) disseminate informatics related research findings that can impact the point of care, and 2) stimulate discussion and networking among attendees related to the state of the science of informatics, current challenges, and future directions. (Rochester, MN)