BreathEasy Android Application and Web Dashboard Design

Yuying Zhang, Lead Developer of BreathEasy Android Application and Brian Olive, Lead Developer of BreathEasy Web Dashboard, RTI International

The BreathEasy Android application is designed to be an easy-to-use tool that allows study participants to enter observations of daily living (ODLs) such as peak flow readings, asthma triggers, stress and activity levels, sleep patterns, symptoms and medication use. Data are collected through a few self-guided questions in a way that is similar to traditional survey data collection. With built-in data validation and smart logic design, most users will require fewer than five minutes each day to record their ODL entries. The main menu of the BreathEasy app offers three options: “enter daily data,” “enter rescue data” and “review partial data.” “Enter rescue data” allows participants to quickly enter rescue medication usage information for that day. Patients can review their partial ODL entries and make edits to them before the data are automatically sent to our RTI central server for analysis and storage.

In order to track our patients’ ODL reporting over a several-month period, a reminder system is a must. We developed a notification mechanism in the app that reminds the patient to enter their data at a predetermined time (set by each patient) every day. The app also automatically sends real time ODL data to the RTI central server. The monitoring system on the back-end server gathers all data and analyzes them. If a patient fails to enter her ODL data for more than 36 hours, then a text message, which reminds her to record her ODLs, is instantly sent to her phone. If the patient still doesn’t respond once the message is sent, a different set of text message reminders is then triggered.

Based on the results of our focus group study, we designed the web dashboard to give clinicians a quick overview of their patient’s status between office visits so that they can provide feedback to the patient if needed. The  web dashboard provides graphs of peak flow measures for each individual patient for a given time period; symptoms, activity levels, mood and anxiety levels as well as other ODLs are plotted on the same graph for a comprehensive view of the patient’s overall health status. Clinicians can select areas where they want to see more detailed information on the patient’s graphical display. The web dashboard allows easy navigation from one patient to the next. It is very secure and uses industry standard 256-bit encryption and user authentication.

The BreathEasy Android app is developed on an open source system called Open Data Kit (ODK), which is a native Android application targeted for Android OS 2.1 or higher. The BreathEasy website is an ASP.Net and SQL server-based application. These two very distinct systems communicate via standard http protocols over the Internet. We’re finishing up development in anticipation of laboratory-based user testing, which will begin soon.

Selecting an Android Phone and Wireless Carrier

Jay Levinsohn, Ph.D., BreathEasy Technical Lead, RTI International

The process of selecting an Android phone for the BreathEasy project was interesting.  After selecting the Android platform as the operating system for the project, the choice of the actual device to use as the handset remained. 

The Android market is on fire right now.  Phone and tablet makers, telecom carriers and third-party resellers are hard at work competing for a share of this rapidly expanding worldwide market.  In the United States, the selection process is complicated by the fact that most telecom carriers lock their phones to their systems. Many carriers offer nearly identical phone models. Once you select a phone from a particular carrier, however, then that phone is tied to that carrier for the life of your contract.  Additionally, the phone configuration varies slightly from carrier to carrier even for the exact same phone.  Beyond the differences between carriers, rapid changes have been unfolding in the Android operating system throughout the course of the last year (e.g., at least three changes in the last 12 months) and changes in the available phone hardware have been unfolding even more quickly. 

Despite the carrier complexity and rapid changes involved when considering devices that run on Android, the good news for our team as we looked at devices was that almost all of the new phones we considered were capable of executing the tasks required for our project.  They all have:

• Fast processors
• Excellent screen displays (4” or larger) and multi-touch screens
• Adequate internal memory and internal memory cards (8 GB or more)
• Android 2.1 or later operating system

Because so many of the phones met or exceeded our requirements, our choice really boiled down to choosing a carrier and phone plan. In order to compare vendors, we looked at several carriers, including several third party vendors who resell network capacity. We found that with the exception of the resellers, they all offered capable new phones that meet our specifications.  Therefore, we ultimately spent less time considering differences between individual phones and more time evaluating differences between vendors (e.g., voice plan price, data plan price, required contract length, cancelation fee, billing and management tools offered, vendor reputation and quality of network coverage).  These are the variables that really effect costs. 

AT&T offered us the best price on a capable new phone, the Samsung Captivate (Model SGH-I897 Galaxy S).  Additionally, for our purposes, their phone management options and voice and data plan prices best fulfilled our needs and budget.

More Patient Engagement in Meaningful Use

Bob Belfort, Manatt, Phelps & Phillips, LLP

As National Program Director Patricia Flatley Brennan and Deven McGraw of the Center for Democracy & Technology have discussed in recent blog posts, Stage 2 of Meaningful Use may set higher standards for health care providers’ engagement with patients. For example, in Stage 1, providers need only provide patients with an electronic copy of their health information upon request 50 percent of the time. But under Stage 2, providers may be required to use online secure patient messaging to communicate with patients via e-mail.

This move toward more patient engagement in Meaningful Use leads to an important question, which PricewaterhouseCoopers (PWC) explored in a recent research paper titled “Putting Patients into Meaningful Use”: How can health care providers use health IT tools, such as personal health records (PHRs), to effectively expand the care team to include patients?

A recent study suggests that less than half of all physicians are willing to use patients’ PHRs as part of their clinical work. Mistrust of patient-generated data, time constraints, lack of financial incentives and liability concerns are several issues that could contribute to this sentiment. To truly exploit the transformative potential of health IT tools, health care providers will have to become comfortable with engaging patients as more active partners in managing their own care. This is why Project HealthDesign is so important to ensuring that the government’s larger health IT adoption efforts succeed.

We are looking forward to talking about the issue of provider liability for reliance on patient-generated data and other related issues at an upcoming meeting with our five current project teams. In the meantime, we encourage you to let us know what you think about the steps PWC outlined for using PHRs to effectively expand the care team to include patients and consumers:

• Make providers (doctors, nurse practitioners) the face of the PHR.
• Define expectations for active participation by patients.
• Keep family members in the loop.
• Work side-by-side with patients as they use their PHRs.

They seem like good baseline recommendations to us. How would you build on them to be more specific?

Related resource:

• Read the full PWC report.

What’s in a Name?

Gillian Hayes, University of California, Irvine, FitBaby Principal Investigator

One of the strangest things we do in Information and Computer Science research is to name things like projects, software and research groups. We are big on naming. Difficult as it is to get a name just right, it actually turns out to be kind of important. The name of the project or software system is often the first encounter a research participant has with our work, and the name can greatly color what they think the project is all about.

When our project began, the focus was on supporting parents in conducting an assistive exercise intervention in the home. So, we thought about exercise and fitness and came up with the name FitBaby. As the project has evolved, however, it has become about so much more. Now we are working with parents and clinical partners to understand a greater ecosystem of care, one that includes tracking emotional and mental well-being as well as physical well-being. Our research includes families from all kinds of backgrounds; many of these families speak Spanish at home.

For these reasons, we thought we should go back to the drawing board to name our new system, which is the successor of the original FitBaby prototype. After much discussion, we settled on Estrellita, which means “little star” in Spanish. This name honors the cultural background of many of the participants in our studies over the years. It also has the added bonus of highlighting the baby as the “star” of the application and playing on the name of our research group (Social and Technological Action Research, or STAR).

We were concerned about various issues with the name. For example, Karen Cheng, co-principal investigator, made the interesting and compelling observation that many English-speaking Americans don’t know how to make the Spanish “y” sound for “ll” in the middle of Estrellita. This observation prompted us briefly to consider naming it Estrelita to encourage proper pronunciation.

In the end, we've found the name Estrellita to be a pretty good fit. Our team is pronouncing it properly, and Spanish and English speakers alike respond with “Awww!” when told the name (and its meaning for the English speakers). We hope our future Estrellita users like the name as much as we do.

Do you take similar care when naming projects or technology? How have users responded to the names you’ve chosen?

Read more posts from the FitBaby project team.

Listening to Health in Everyday Living

Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director

About three years ago, our Project HealthDesign project teams began hearing something odd and unexpected from the patients involved in their user-centered design activities — the sound of health in everyday living! Health doesn’t come labeled in the professional, clinical-speak of signs and symptoms. It sounds like a family’s laughter, strained dinner conversations or the peaceful snoring of a parent who’s sick. It sounds like the birds one hears while taking an especially long walk or the raspy breathing that precedes an asthma attack. It sounds like the words an elderly woman uses when she explains to her physician that she “just doesn’t feel right” after taking her medication.

We’ve called the phenomena these sounds reflect “observations of daily living,” or ODLs. ODLs are sensations, behaviors, environmental exposures, thoughts and social experiences that serve as clues to health and health activities. We have been trying to better understand the stories they tell.

We’ve learned that with ODLs, there is a jargon or rhythm to the sound of health, and that it doesn’t sound at all like the sounds of health care. What it does sound like may be idiosyncratic, or unique for each patient. Like the more familiar signs and symptoms, ODLs provide snapshots into a person’s health situation. However, unlike signs and symptoms, which have a scientifically proven link to an underlying health process, ODLs represent what a patient pays attention to; this is why ODLs  are so important for patient-centered care.

Our five current Project HealthDesign project teams are hearing about a whole new set of ODLs. Listen to what they are hearing:

The Embedded Assessment team at Carnegie Mellon University is using sensors embedded in household objects such as coffee pots, telephones and pill boxes to monitor how well elders are doing everyday activities. Understanding how well — or how poorly — an elder performs routine tasks may provide the early warning signals needed to bring help in a timely fashion. The sensors, if fired in the anticipated sequence, will show that the person is handling things just fine. However, sensors firing out of sequence or not at all suggests that some type of cognitive disruption is occurring — perhaps the elder can’t remember the steps to making coffee, or has forgotten to take meds at a certain time. Of course, one misstep doesn’t equate to profound confusion. That’s why we think of ODLs as sentinels, not signals. The ODL here is the firing sensors; this ODL must be interpreted and validated in order to serve as an indicator for action.

The iN Touch team from San Francisco State University is reaching out to teens who are both obese and at risk for depression. This group is going to use camera-equipped cell phones to prompt the teens to take photos of their food, record their menus on the spot and to rate things like: feelings, interactions with others, and activity levels. The ODLs here might sound like nutrition, mood, social activity and using the phone to capture information in real time. This information will be stored and reviewed later with a health coach, and could serve as the key for real success in weight management.

Again, awareness of ODLs is only part of the story. The other part is looking for patterns in the clues. It’s a lot like the sound of a crying baby — crying is an ODL, but distinguishing between the sound of a distressed cry and a bored cry means the difference between responding with comfort or stimulation. And, speaking of babies crying, we’ve wondered whether ODLs exist if you can’t hear them or know what they mean. But of course they do!

The FitBaby team at the University of California, Irvine is working with parents and young infants. They’ll be looking at how things like the number of diaper changes or the sound of a mom singing to a baby give clues to the quality of the parent-child relationships and the health of the baby. They’ve created a Mind Garden to appraise parents’ stress levels, and are using photos of baby poop to evaluate the adequacy of baby’s nutrition.

Over the next few weeks we’ll be introducing you to more sounds of health in everyday living. Join us on the journey to decode these clues and figure out how to use them to improve health!

Read more posts about ODLs.

Brrr! The Challenges of Cold Calling

Janelle Charles, San Francisco State University, iN Touch Research Assistant

One of the most challenging ways to recruit participants for a clinical research project is through cold calling. I’m certain the reason this style is compared to the cold is because first you must warm patients up in order to spark their interest in your project.

In order to be successful at engaging participants during cold calls, you should capture their attention during the first 30 seconds of the interaction. To do so, it is important to be cheerful, personable and relatable on the phone. Don’t sound tired or monotonous. Participants need to feel your excitement for the study in order to get excited. So, be lively!  Once you’ve set the warm ambiance, it is easier to go in for the close and—for research assistants that have a multistep recruitment process—you may have a better chance at an opportunity of meeting prospects in person.

The first impression isn’t the only factor that can influence your success. You may encounter several other obstacles while making cold calls. Here are some cold calling challenges specific to our study:

1. Protective parents: Most of our prospective participants are under 18 and the first step in recruitment is talking to their parents. Our strategy in winning parents over is explaining study details simply and clearly. We also make sure to emphasize their child’s rights.
2. Language barriers: A significant number of our prospective participants live in Spanish-speaking homes. Our bilingual research assistants communicate study goals and details to parents in Spanish. We also employ the interested youth by encouraging them to discuss the project with their parents.
3. Being creative with the IRB-approved script: When calling prospects, observe their responses to the script. If you are not successful at first, try to play around with your voice cadences and rhythm. You have to stick to the script, but make it fun!

Our team is currently in the process of recruiting. Here are some of our preliminary results:

Cold calling: We made a total of 29 cold calls to prospective participants. Eighteen either did not answer or were unavailable to speak with the research assistant; six refused to participate; and five agreed to meet with our staff to determine eligibility.

Clinician referrals: When the school nurse at one of our sites talked with the candidate first, we had a much higher recruitment rate. Of 15 candidates referred by the nurse, 12 agreed to participate. The remaining three are still awaiting follow-up.

Have you faced similar challenges when recruiting? How did you address the challenges you faced?

Evaluating Meaningful Use of Health Information Systems

Kathy Johnson, R.N., M.S., Project HealthDesign Ph.D. Candidate in Nursing, University of Wisconsin-Madison

Right now, we are witnessing the birth of a health information technology system architecture. Because of the complexity of this integrated structure, the evaluation of this process requires a great deal of thought.

The Health Information Technology Policy Committee (HITPC) recently solicited public comments on proposed meaningful use Stage 2 criteria [pdf]. May and colleagues’ Normalization Process Model provides theoretical guidance for this type of evaluation (May, et al., 2007). This model proposes that the evaluation of complex intervention implementations requires more than the measurement of outcomes and effectiveness; it holds that the social relations and processes related to the work that leads to those outcomes must also be considered. It emphasizes the processes by which complex interventions are made workable and integrated into everyday practice.

I argue that there is an implicit normativity, or reliance on common perceptions, in the emerging structures of the health information technology system. The proposed criteria for clinician meaningful use reflect only the clinical side of a system that is meant to be used by everyone. This approach to meaningful use is clinician-centric; the opportunity for patients to contribute health information in a format that is meaningful to them has not been addressed. Furthermore, efforts to evaluate the effectiveness of these systems have only been in terms of percentages of information bins filled; the only “meaning” in this rubric is the completion of a task.

Others may assert that there is nothing wrong with an implicit normativity by arguing that the professional is “in charge” of the patient and that the root purpose of the system is the provision of patient-centered care. If that is the case, then we are not moving toward a system that invites patients to participate in their care. Instead we are merely moving from paper to electronic documentation. Before us is a stellar and unprecedented opportunity to create a system that is meaningful for all.

Related resource:

• May, C., Finch, T., Mair, F., Ballini, L., Dowrick, C., Eccles, M., . . . Heaven, B. (2007). Understanding the implementation of complex interventions in health care: The normalization process model. BMC Health Services Research, 7, 148. doi:10.1186/1472-6963-7-148