Project HealthDesign Blog

Project HealthDesign: A Platform for Innovation

Posted June 17, 2009 by Patti Brennan 

Last week, I blogged about the bright and exciting future for PHRs and the health of the people who use theme evidenced in the proposals submitted on June 3 for our second round of funding. Today, I have a unique opportunity to take the next steps towards that PHR vision, not only in announcing the final report from our nine grantees and their support teams, but also by fulfilling our promise to openly share our work products.

Back in 2006 our team launched the Project HealthDesign program with an audacious goal–stimulate innovation in personal health records by embracing a design process grounded in two principles:  make the patient the center of the design process; and, separate the data from the application. To underline the seriousness of our commitment to stimulate future development, we adopted a policy of wide-spread distribution for use of the tools and technologies built under this project through open source strategies.  

Beginning today, the final report from Project HealthDesign’s first round grantees and their downloadable work products are available for your viewing and use at Round 1 Projects and Products. The files contain the vision, design and code documents created by our grantees, as well as the code and documentation for using our common platform. The vision and design files represent a high level of innovative thinking inspired from an intense user design process. Included here are videos depicting project concepts, executable code, interview guides, software development strategies and publications and poster presentations. In addition there are archives of informational documents created by the ELSI team and our communications group. 

We have also provided the Common Platform software under an open-source license for interested  parties who wish to implement it in their local environments. This Common Platform, designed to meet the requirements of our first round grantees for storing and sharing personal health data, provides a web-services data repository that manages observations, medication lists, and access-control preferences.  We are interested in learning about your experiences in testing these products, and hope you will down load them, implement them and let us know how they worked for you.

Over the next several months, I encourage our followers to take some time to explore our first round materials. There are tools for all levels of sophistications and interests–ranging from code and code documentation to visual stories demonstrating the grantee applications. The products are available to you through open source or creative commons licenses that seek only to insure these products will remain available for use by the health IT community. We encourage you to look at these products, try them out and use them, and share your experiences with us and the community at large through our BLOG.

We hope the work products from Round 1 will inspire vision as well as provide tools to help foster innovation, as we seek to create better ways of managing the health of individuals and the community-at-large.  

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design.

Signs of a Vibrant Future for PHRs!

Posted June 10, 2009 by Patti Brennan

This June third, Project HealthDesign reached another milestone with the receipt of 145 Brief Proposals for its second round. Not only did it mark the start of the new phase for the project, but it also ushered in a plethora of intriguing, exciting projects exploring how better understanding of observations in daily living  (ODLs) could improve the health and health care of individuals. During the review process we can’t reveal too much about the proposals under consideration, but here we provide you with a glimpse of what is to come.

Proposals described innovative ways to help a wide variety of patients and their family caregivers better understand, and manage, problems like  pain, diabetes, hypertension, spina bifida, hydrocephalus, rheumatoid arthritis and  intimate partner violence. Creative technical solutions were proposed to address the needs of those who are elderly, sensory-impaired or of limited health literacy. Target populations included parents of low birthweight infants, teens transitioning to college and people in vulnerable situations, such at those who had just been discharged from the hospital, recently moved away from home, or lived in an area with few or no medical facilities or providers.

The nature of the ODLs proposed ranged from familiar patient-provided information (appetites, sleep adequacy, etc) to those reflecting a high degree of understanding of patients and their health experiences.  Novel ODLs included behaviors, emotions, sensations and environmental characteristics. 

You may recall that we challenged the applicants to employ a 3-part technical architecture--with data capture in the everyday life of the individual, data storage on a third party platform like Microsoft’s HealthVault or GoogleHealth, and data interpretation and presentation back to the clinician and the patient. Along with standard data capture, teams proposed utilizing photos, environmental sensors, gait analysis, grocery store transactions and vocal recording.  Almost one-third of the projects proposed using Web 2.0 tools, including social networking tools, Twitter and SMS. Platform use was almost evenly split between Health Vault and GoogleHealth. In addition to innovations like dashboard presentations, applicants proposed using electronic messaging, graphs and charts, and standard reports as ways to present integrated views on the ODLs.

Submissions came predominantly from the Northeast, with most submissions from Massachusetts, California, and New York. More than half of the proposals came from educational institutions, sometimes because the project addressed the health needs of students and sometimes because the educational institution served as the work site of the lead proposer. The second most common organizational type was medical centers and hospitals. A smaller but critical set of proposals came from the private sector, split between for profit and non-profit companies.  This round brought in almost a dozen proposals with nurses as primary investigators, more than the first round.

With the breadth, range and ingenuity brought forward by teams who submitted brief proposals, Project HealthDesign is looking forward to the coming round and the future of capturing and utilizing ODLs in patient care. Our National Advisory Committee will spend the next several weeks evaluating these brief proposals; we’ll select up to 25 by July 20^th and invite them each to prepare a full proposal.  We will announce the final list of grantees by December 1, 2009. 

Congratulations to all 145 teams who submitted proposals–the creativity and vision of the ideas presented here portends a bright and exciting future for PHRs and the health of the people who use them!

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design.

Warm and Fuzzy User-Centered Health Applications for Kids (Literally, and Figuratively)

Posted June 2, 2009 by Jason Rothstein and Lygeia Ricciardi 

User-centered design (UCD) is one of the key themes of Project HealthDesign’s first round of grants. What does that mean? It means designing health applications and interfaces with actual patient use—and direct patient input—in mind from the start, rather than focusing on technical functionality first and integrating patient preferences later. 

With a background in both pediatrics and bioinformatics, Project Health Design round one grantee, Dr. Kevin Johnson, from Vanderbilt University Medical Center, brought a strong user-centered orientation to My-Medi-Health, a prototype medication management system that offers a fresh approach to involving children more directly in the management of their own chronic conditions.

And we really mean a fresh approach. Most medical devices are less than warm and fuzzy, but Dr Johnson’s team actually embedded a set of functions in a teddy bear as one of their demonstration projects. Though Project HealthDesign’s second phase places less of an emphasis on UCD, we believe it continues to be an important aspect of designing successful tools. Following are some words of wisdom Dr Johnson shared with us about how to take a UCD approach to developing other health–related applications:

Understand your patient’s ‘life space.’ Even though most of a patient’s care takes place outside of a clinical setting, that care remains part of a larger system that may involve multiple caretakers and multiple locations. Using a process based on Kurt Lewin’s Force Field Analysis, Dr. Johnson’s team focused initially on home visits and school visits to really understand how these environments and the people in them influenced children’s medication compliance.

Find where systems break down, and approach solutions broadly. Dr. Johnson and his team conducted extensive focus groups to better understand the challenges kids and their caretakers faced with medication management. One of their more interesting findings was that in most cases, the pediatric patient wasn’t an active participant in his or her care. While My-Medi-Health’s design would involve children more directly in the process of medication management, making this change also required a bigger philosophical shift that had nothing to do with software design: giving children one or more doses to carry at all times, empowering them to make more choices about their lives and schedule.

Conceptualize without limitations. When it came time to make the first paper prototypes, Dr. Johnson’s team involved patients and families directly, and didn’t give them limitations by specifying imagined hardware or software. Instead, they showed pictures from The Jetsons, and pointed out that nowhere in the show do viewers ever see someone sitting down at a computer. They asked their user group to imagine that kind of seamlessness and integration with everyday life, and let their imaginations go.

Embrace early adopters. While you shouldn’t lose sight of the value of simplicity and usability, always take advantage of the enthusiasm and technological sophistication of early adopters during the innovation stage. But…

Use commonly available technology.  My-Medi-Health started with an all open-standards approach, using DHTML and PHP to build the user interface. As early focus groups led the team to a slightly more intricate user interface, they decided to add a new front end using Adobe Flash, a non-open, but widely available platform free to the end user. And…

Never forget that new technology is on the way. As you make decisions about implementing solutions, try to anticipate that new technology (and new patient preferences about how to use technology) always lurk just around the corner. Try and anticipate the need to change and adapt down the road by making wise choices that don’t marry process solutions and individual technologies together too closely.

Innovate, Demonstrate, and then Compensate. UCD relates to usability and accessibility, but remains a distinct process. Dr. Johnson understands that introducing new technology tools into patient care gets more complicated when you consider the needs of particular populations, such as the disabled, the elderly, or those who stand on the losing end of the digital divide. But factoring in these considerations too early in the process can be risky. First you innovate to try and solve the broader, more universal problems, and then you conduct effectiveness studies to demonstrate that these solutions actually have an impact on quality, safely, and outcomes. After you establish that you have an effective application, then you can conduct meaningful, high-quality work to make that application as widely available and useful as possible.

 

 

Project HealthDesign and Health 2.0 Accelerator Focus on “Observations of Daily Living”

Posted May 4, 2009 by Aaron Apodaca and Julie Murchinson

Round 2 of Project HealthDesign, funded by the Robert Wood Johnson Foundation, builds on a key learning from Round 1: people live with and manage their health every day, not in discrete and separate episodes. This may seem like an obvious realization to some; but the “traditional” health care system most of us use is not really designed with this in mind. Our system is getting better at enabling patients to do things such as view a version of their electronic medical record or lab results online and automate appointment scheduling or payments. And yet, most of this progress is still limited to clinical and administrative data that is generated based on episodes of care and limited to the institutional medical record. This is where “observations of daily living” (ODLs) come in.

The Health 2.0 Accelerator (H2A), a nonprofit whose goal is to advance consumer-centric health care by driving integration of technology and the consumer experience, has partnered with Project HealthDesign to help those interested in submitting a Round 2 application to connect and identify Health 2.0 solutions that can be leveraged to identify, interpret, and integrate ODLs. It turns out that the Health 2.0 community is particularly well suited to support this focus as Health 2.0 companies have developed applications for the web and mobile devices that enable new models for capturing and sharing health information. Whether condition-specific communities or personal health logging/tracking tools, these new models are based on the notion that individuals and communities can generate new insights by managing health as part of everyday life and engaging with others that share a common condition or health interest. Health 2.0 companies know how to capture and make sense of “user-generated” data that can bridge the gap between provider visits, helping both patients and providers make decisions to influence behavior and health outcomes.

What can YOU do to leverage the partnership and get involved with Round 2? 

• Participate in one of two webinars H2A will offer to potential applicants on May 5^th and 12^th, including a look at the Health 2.0 landscape and examples of how Health 2.0 technologies are relevant to and working in the “traditional” health care environment.
•  Applicants of all kinds, whether institutions, clinical partners or Health 2.0 companies, can ask for help identifying technology solutions or partners. H2A also offers a listing of Health 2.0 companies for applicants that are not familiar with companies in the space. 
• Health 2.0 companies should contact the Accelerator team to ensure we are able to provide the latest and greatest information for Project HealthDesign applicants. In an environment that is constantly evolving, with new companies and products continually being introduced, your updates are essential!
• Health 2.0 companies can coordinate with H2A to offer web demos of their offerings to potential PHD applicants.  

To register for a Heath 2.0 Accelerator  webinar, ask for help identifying partners or solutions, submit an update to the Health 2.0 listing, or coordinate a web demo, visit http://www.h2anetwork.org/phd.

Audience votes for Living Profiles at Health 2.0 conference

Posted April 24, 2009 by the Living Profiles team (Project HeathDesign grantee) 

At the Health 2.0 - Information Therapy conference in Boston yesterday, the Living Profiles team did a demo of our prototype in the "LAUNCH!" session that premiered the most innovative products in development in health care right now. 

Nine participants were asked to give a five minute demo of their technologies, and at the conclusion, Living Profiles was voted by the audience as the most exciting and forward-thinking project in the group! 

The prize was a main stage speaking engagement at the Health 2.0 conference next fall in San Francisco. We believe that this type of recognition only further illustrates the probability that this type of interface will be widely used and accepted by a variety of audiences. Thanks to Project HealthDesign for being so supportive of our unique project, and hope to see everyone in San Francisco!

Accelerating consumer-focused health: the Health 2.0 - Info Therapy Conference

Posted April 22, 2009 by Lygeia Ricciardi 

I’m writing to you from the “Health 2.0 Meets Information Therapy” conference in Boston. The conference is very relevant to readers of this blog in its emphasis on health, information, user design, and user-generated content (and Project HealthDesign is, in fact, a conference sponsor). 

Last fall I attended the Health 2.0 conference in San Francisco. What I enjoyed most was the opportunity to learn about and meet people building and actually running a variety of creative Health 2.0 companies. (There several definitions of Health 2.0, but the basic concept has to do with collaborative, participatory healthcare that is generally consumer-oriented.)

This time, given the recent announcement of the 2^nd round of Project HealthDesign’s grants, I’m interested not only in seeing what’s out there, but also in spreading the word about and encouraging people to apply for grants.

As you can imagine, particularly in this economic climate, the word “grant” attracts a lot of interest: everyone is looking for funding, yet resources are scarce. And a wide variety of types of organizations, including for-profit companies—are eligible.

But I think it’s important to also emphasize the non-monetary benefits of being a Project HelathDesign grantee. For example, grantees are part of a community of peers and experts who help to hone and improve their ideas. They have numerous opportunities, through structured workshops and other activities, to learn from other teams of grantees and from experts in the field. (In the first round, the Project hired Sujansky and Associates to develop a set of platform components to meet the specific needs identified by grantees.) 

Another goal of Project HealthDesign is to help to shape the development of the consumer-health field, both by sharing its own findings (see for example the e-primers from Phase 1) and by educating policymakers about the changing health landscape and its many implications, including social and ethical ones. In the last round, grantees travelled to Washington DC to meet with members of Congress after a coaching session that helped them convey their ideas is Washington-speak. In the next round, the emphasis on helping to inform policy will continue, and we will also be encouraging grantees to use the vehicle of this blog more often to get their voices out to a broader public.

If you are on the fence about applying for a Project HealthDesign grant or need help forming partnerships with other organizations, we can help, as can our partners at the Health 2.0 Accelerator, a non-profit collaborative and match-maker associated with the Health 2.0 conference. I’d also encourage you to attend one of the webinars about the grants coming up in April and May.

 

Be a Part of Project HealthDesign

Posted April 16, 2009 by Patricia Brennan, RN, PhD, FAAN

This is a very exciting time for Project HealthDesign. 

If you are reading this, you probably know that we have just released a call for proposals for a second round of funding. 

One of the most helpful insights from our project to date is the importance patients place on collecting and sharing data that aren’t typically part of their medical record, but come from their everyday life – observations of daily living (ODLs).  In projects selected from among the applications that will be submitted to Project HealthDesign this June, grantees will test what and how ODLs can be used by patients and clinicians together.

Since we know patients are experts at their personal experience and clinicians are experts at clinical practice, to make health care more efficient and effective, we need to integrate their expertise so that providers can offer actionable advice when patients need it, resulting in better outcomes – possibly at lower cost. Teams selected for the new round of funding will use personal health record (PHR) technologies to conduct small trials with patients and clinicians in real care settings.

I would like to invite you to follow and help shape our work by applying to be a new grantee, being part of our dialogue and/or by passing along this information to your colleagues. Follow us on Twitter, subscribe to receive our messages and alerts, and subscribe to the blog’s RSS feed.

The Focus of Project HealthDesigns’ New Round of PHR Grants

Posted April 8, 2009 by Lygeia Ricciardi

As you may have seen, today Project HealthDesign announced a call for proposals for its second round of grants related to the development of personal health records (PHRs)—making $2.4 million available for several grants of up to $480,000 each.

What’s different about this round from the previous one? A key point is the explicit emphasis on capturing and integrating consumers’ (or patients') observations of daily living (ODLs) into a PHR and then—taking the idea a step further—directly into the workflow of their health care providers.

The ODLs focus is based on input from patients in the previous round of Project HealthDesign grants. Project leaders say one of the key learnings from the initial phase was the importance that patients placed on collecting and sharing data that are not typically part of the traditional medical record, but rather come from everyday life.

Steve Downs, who oversees the Project HealthDesign program on behalf of the Robert Wood Johnson Foundation, describes it this way: “We routinely saw people gather data on diet, exercise, sleep patterns, pain levels and many activities that give us a more accurate, meaningful picture of how people feel, day in, day out. This is powerful information that could help clinicians understand their patients better, understand how a treatment is working and adjust the treatment accordingly. We’re at a time when the technology has advanced enough that we can contemplate real breakthroughs in how to work with patients that suffer from chronic diseases.”

Project HealthDesign Director Patti Brennan of the University of Wisconsin-Madison further illuminates the ODLs focus: “The first round of Project HealthDesign taught us that the needs of patients must be the primary drivers of technological innovation. When it comes to patients being active managers of their own health and health care, we learned that it’s not just important to record observations from the clinical experience; personal observations of health as we go about our daily lives are equally critical. Information about how you feel and what you experience on an ongoing basis needs to be easily integrated into clinical processes because these observations reveal trends that enable care to be vastly improved and tailored to patients’ realities. By allowing this type of information to be shared easily between patients and providers, we believe people will experience a different level of engagement with their health and the health care system. The result might well be better patient-provider relationships and better clinical outcomes.”

If all goes well in the second round of funding, the project may see these kinds of outcomes and will no doubt learn other unexpected and valuable lessons from patients along the way. For-profit and non-profit entities may apply for grants. Initial (brief) proposals are due on June 3, 2009. For details and more information, see the full call for proposals. And feel free to submit any questions or observations you my have via this blog.  

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…. 

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.