Our Participants’ Favorite Feature in the Mobile App: Appointments!

Karen G. Cheng, Estrellita Co-Principal Investigator, University of California, Irvine

When our team was first identifying the observations of daily living (ODLs) we were going to support in our app, we had a lot of discussions about whether to include appointments. They did not seem to fit into cleanly into the definition of ODLs. Yet, clinicians told us repeatedly that they needed to know if and when infants had attended appointments with other doctors. Missed appointments are a huge problem in this population, negatively impacting the care of the infant and adding extra cost to an already strained health care system.

We decided to go ahead and include this feature in the Estrellita app. All along the way, we questioned our decision, as it took much longer to build the appointments feature than we had anticipated. We also questioned how many times parents would actually track appointments, because we did not know for certain how many appointments the infants had.  

However, we have since found that tracking appointments is a very useful feature for the parents in our study – and one they often report as their favorite! In Estrellita, parents can pull a doctor’s contact information from the phone’s Contacts list (or manually enter it). They can choose the doctor’s specialty, record the time and date of the appointment, record any questions to ask the doctor, and easily enter a follow-up appointment. When an appointment is coming up, parents receive reminders starting two days before the appointment. After the appointment time has passed, an automated Estrellita message asks parents whether they attended the appointment; if they did not attend the appointment, the app encourages them to reschedule the appointment. A Past Appointments tab allows parents to quickly glance at a list of previous appointments

Through the clinician web interface, the EDAC case manager can see monthly calendars for each baby. Icons are used to indicate when appointments are scheduled and whether the parent and infant attended or missed the appointment. Because of these data, there have been several cases in which the case manager was able to follow up with parents to ensure that the missed appointment was rescheduled.

When I look at the monthly calendars, I am just stunned at the number of appointments these infants have. Many of the infants in our study have four or five appointments per month. Some have as many as three per week!  Rarely are the specialists in the same office.  And so, these sleep-deprived parents have to manage not only the dates and times of the appointments, but also the locations – amidst other family obligations, work commitments, etc. It’s no surprise that parents miss appointments! 

Our hope, then, is that Estrellita has been able to help parents reduce the number of missed appointments – either by reminding them of the time and location of appointments or by encouraging them to reschedule. Preliminary analysis of interview data supports this goal, and we hope to see more evidence of it as the study continues.

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Engaging Patients Through Trust

Barbara Massoudi, BreathEasy Principal Investigator, RTI International
Rita Sembajwe, BreathEasy Project Manager, RTI International

Editor's note: This post is fifth in a series on patient engagement.

When describing the BreathEasy project patient population to colleagues, we’re often met with skepticism about the wisdom of working with an economically disadvantaged population. Some people ask whether it wouldn’t have been easier to work with a middle income population or with people who already own smartphones. The assumptions underlying these questions are that this population can’t be trusted with expensive equipment, or won’t be reliable recorders of their observations of daily living (ODLs). Our colleagues are expecting that the choice of population will somehow negatively impact our ability to conduct the research, and therefore, should be avoided.

We tell them the members of the BreathEasy patient population were selected specifically because they stand to benefit the most from using the application as they inherently have fewer resources at their disposal! Patients enrolled in the study were selected because of socioeconomic status based on their residential zip code, and that method worked well for us. The median income for BreathEasy patient participants is between $10,000-15,000 annually; participants have a high school diploma or less education; and most are unemployed.

Our experience working with these patients has proven to be very different from what our colleagues anticipated. As we approach the conclusion of the six-month evaluation period, we’re still seeing very consistent reporting of ODLs by the patients. In fact, whenever patients have anticipated a time when they won’t be tracking consistently, such as a planned surgery or childbirth, we’ve received text messages stating that they’ll be off the application for some time, but back on soon. We’ve also received phone calls and text messages when patients have had unexpected events, such as hospitalizations, that have caused them not to report. The patients have been very apologetic about not recording for a few days.

What we find striking about this is that the level of patient engagement we’re seeing exceeds that of middle class populations. Perhaps the BreathEasy population is more grateful for the mobile application and the opportunity to participate in the study. We’ve heard patients express that such an app “…will help me and my doctor track my asthma a lot easier,” which tells us that they do feel like the app serves a purpose. We have also heard patients express the view that “the app is designed by us, for us, and for our benefit.” These are certainly encouraging words for researchers taking a user-centered design approach. We also think there’s an important element of trust and fulfillment of expectations here. As Barbara’s mother used to say, “If you expect people to do great things and let them know it, they usually won’t let you down.” We’d say there’s more than a bit of that happening here. Stay tuned for a future post on the outcomes of our evaluation period.

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Evaluation Infrastructure Headaches

Matthew Lee, dwellSense Lead Researcher, Ph.D. Student in Human-Computer Interaction, Carnegie Mellon University

Long-term deployments of technology give researchers an opportunity to understand how technology can be embedded and incorporated into people's lives, particularly since observations of daily living (ODLs) naturally occur in people's everyday lives. However, long-term deployments are not without their hazards. One of these hazards is that the longer the study, the more likely it is that things (both good and bad) will happen to affect the data collection and even the integrity of the ODL data. I'd like to detail a couple of issues that recently complicated our deployment: Wi-Fi coverage and residents moving apartments.

In our evaluation of the dwellSense system, we have deployed a suite of sensors in 12 apartments in a senior high-rise apartment building. For the last seven months, these sensors have captured information about participants’ daily activities such as medication taking, phone use, and meal preparation. To provide us with the connectivity we needed to collect the data from our sensors, we set up a Wi-Fi network that covered the apartments in our study. Initially, this was a challenge because 1) participants lived in different parts of the buildings and 2) the building’s dated architecture  and thick walls reduced Wi-Fi coverage. During the initial deployment, we solved this coverage issue by installing wireless routers that piggy-backed on existing broadband service in two of our participants’ homes. This was enough to cover three floors of the building where many of the study participants lived. All was well for about seven months.

At the beginning of the eighth (and final) month of the evaluation study, we learned that the 90-year-old, historic building was finally going to be renovated. Of our 12 study participants, three had to move apartments. Fortunately for them, they each moved to a beautiful corner apartment with a view of city. Unfortunately for us, the Wi-Fi network and router we had installed in one of their apartments no longer reached any of the other residents. 

The first solution we tried was to install a Wi-Fi repeater to increase the range of our network. This attempt didn't work because the repeater would not connect to the router we set up. The repeater connected well with other routers, but not with our router. This was frustrating. After many hours rebooting and configuring the repeater and router, they just would not get along. Even if we had gotten them to connect, the repeated Wi-Fi signal was weak at best when extended two floors down where we would need it. 

The second solution we tried was to reinstate a Wi-Fi network in the location where it had been before the move. Fortunately, one of our study residents lived in the center of where we needed Wi-Fi coverage. We asked him if we could pay the additional cost to add broadband Internet service to his already extensive (and expensive) cable television service. He agreed, so we ordered the new service for his account, picked up the equipment from Comcast, and installed the cable modem and a new router in his home. All was well—the dwellSense system in his apartment was once again connected to Wi-Fi and uploading data.  However, even though the router was just a few feet away from the original position, the Wi-Fi coverage  did not reach all the study participants that it had once covered. After countless visits to apartments to find that the computers having trouble connecting to a Wi-Fi signal that teetered between "weak" and "no signal," we realized that we needed to boost the signal with the Wi-Fi repeater. Finally, after installing two additional Wi-Fi repeaters, we were able to get everyone back on Wi-Fi for the final month of the study. This took nearly a week and a half of trial and error with debugging.

This Wi-Fi-induced nightmare should be lesson that evaluating systems in the field can be difficult, particularly if the evaluation lasts for a long time. The difficulties are twofold: 1) the unpredictability of people's lives (e.g., people had to move apartments) and 2) debugging IT infrastructure that is mostly invisible (e.g., it's hard to know how far Wi-Fi signals will reach except by trial and error). However, when understanding how technology fits into people’s lives, long-term evaluations and field deployment are still the best way to get real, valid data.

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The Importance of Holistic Care and the Mother-Baby Dyad

Gillian Hayes, Ph.D., Estrellita Principal Investigator, University of California, Irvine

Beyond the scientific merit, this project has been a learning experience for me, first as a pregnant woman and now as a new mother. I previously wrote about the challenges of recruiting in the NICU when my unborn child was “older” gestationally than the infants we were attempting to enroll in our study. My baby is now 15 weeks old and healthy as can be. We had an easy delivery with only 30 minutes of pushing and were then moved to the Mother-Baby unit; our hospital makes a point of caring for mother and baby together in one room with a shared nurse. Unfortunately, soon after after my son’s birth, I experienced serious complications that led to a blood transfusion and eventual re-admittance to the hospital. As a result, we were split apart as a mother-baby unit and we were treated as individuals when he was only days old.

It was at this point that the importance of treating a mother and her newborn as a unit really hit home for me. If I was sick, he couldn’t eat properly. If he was sick, I worried and it exacerbated my already delicate condition. Every medication I took showed up in his system several hours later.

My very sleep-deprived husband proved his worth as a father in those days. With our families far away, he first had to care for our son by himself while I was hospitalized and then had to care for both of us when I returned home. He used a low-tech (pen and paper) and elaborate (many columns, careful tracking) system for monitoring the intake of my pain and cardiac medications, blood pressure readings, and sleep as well as the baby’s eating and diapering. We eventually transferred these data into Excel and began to search for patterns.

Now that I am healthy, we continue to look for patterns – only now, my husband and I are using our team’s mobile app to record data. Estrellita enables this kind of pattern-searching by letting me examine the baby’s fussiness and my mood (common ODLs for all participants) alongside tables of the foods I eat and naps he takes. It also lets me check my mood and whether I am showing any signs of depression.

The thing I love best about the phone app? I can enter data at night in the dark without having to get out of bed, walk into the bathroom where there is light, and document something on paper (which is what we were doing before we started using Estrellita).

There is, of course, always room for improvement. Future generations of Estrellita should allow for more elaborate visualizations to compare data amongst different ODLs, much like the Chronology.MD concept of stories being told through the data. And, even better would be if more of these data could be collected automatically like in the dwellSense project, because I have also experienced how hard it is to have the time, energy, and brain power to track anything. There is still much work to be done!

Learn more about the Estrellita (formerly FitBaby) project.
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Creative Commons photo by MightyBoyBrian.

Technology Challenges and Successes: A View from Chronology.MD

Marcos Athanasoulis, Dr.P.H., M.P.H., Chronology.MD Technical Director, Healthy Communities Institute
Kathleen Morrison, M.P.H., Chronology.MD Co-Project Director, Healthy Communities Foundation

Our technology team has included a diverse group: a health informatics researcher/CTO, an architect, a health services researcher, and a UCB undergraduate/patient/usability specialist. Because our project experienced administrative delays and personnel setbacks during the first year of funding, the beginning of 2011 required an expedited execution of our app technology. With four people and four very different levels of expertise in the various disciplines required to develop a mobile health app, the effort has been fun, challenging and occasionally frustrating, but ultimately rewarding and educational.

We developed two apps for this study: the Chronology.MD app that allows patient participants to enter data on an iPhone/iPad/iPod, or via SMS text message on other types of phones; and the Crohnograph app, which provides visualizations of the patient data in trend line form on the iPad.

Some challenges we addressed include:

• Multiple technology partners
  In addition to Apple devices, each patient also received a Withings Body Mass Scale and a Fitbit activity monitor that are used to collect ODL data (e.g., weight, steps taken, sleep) . We brought in technology partners, including iMedic8 (the medication adherence app upon which we built our platform), so that we didn’t have to reinvent the wheel. Working with iMedic8, Withings and Fitbit brought us great capabilities but meant coding our apps to conform to all of these existing platforms.

• Multiple authentication methods
  Similarly, the authentication processes for Withings and Fitbit were different. One supports direct back-end authentication while the other requires the user to navigate to their site on the device to authenticate. To make this happen, our developer needed to adapt around the existing workflow of these two technology partners.
  
  
• OS upgrades
  We confronted the realities of dealing with Apple OS upgrades. Because an upgrade occurred mid-project, our app needed to work with Apple OS4 as well as the newer OS5.
  
  
• Hardware variations
  We had to work with multiple types of hardware, and we had to find ways for the app to work with multiple configurations such as the iPad and SMS text messaging.
  
  
• Patient data integration
  Our plan for patient data integration was thwarted when Google Health (our planned data repository) was discontinued. Changes happen. Even large, stable companies cancel products, and we have had to adapt to this reality.
  
  
• Performance issues
  Although our design team had outstanding ideas about data visualization (e.g., screen pinch and zoom timelines for data), some of those ideas were beyond the reality of processor/computing capacity at this time.
  
  
• Vendor issues
  Apple hardware is elegant, but we did have challenges working with Apple, including a very limited discount for nonprofits and research projects, as well as having to go through their application review process with a limit of only 100 provisions for testing.

Technology successes we can identify at this point include:

• We predicted that participants would want to use their own phones for the project, which turned out to be the right call. Not everyone wants to give up their plain old cell phone for a smartphone. In order to accommodate these users, we incorporated SMS text messaging into the app, and all patient participants received iPads that can be used for both ODL data collection and data visualization.
• The popularity of the iPad and the other devices we offered to the cohort have resulted in great user compliance and lots of enthusiasm for the project.
• We have been able to integrate data via the effective APIs available from Withings and Fitbit.
• The device makers realized that multiple people in a household will use the Withings scale, and the log in allows additional names and tracking capabilities. Similarly, iMedic8 can handle additional users.

Onward, HealthVault (and Others!)

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

In June, as soon as Google mentioned its plan to discontinue the Google Health personal health record (PHR) platform, speculators began wondering whether Microsoft HealthVault would eventually follow suit. And once Microsoft and GE announced plans to spin their health groups into a new joint venture, the questions began to flow even more freely:

“It remains to be seen whether HealthVault will follow the Google Health PHR into oblivion.”
- “Microsoft GE Healthcare Joint Venture – A Sign of Weakness or Strength?,” The Health Care Blog

“… Microsoft did state that they’ll hang onto HealthVault, but even here, that is more likely a by-product of no one wanting to take on HealthVault rather than Microsoft’s strong desire to continue to try and build a viable, revenue-generating entity out of it. Do not be too surprised if, in a year’s time, HealthVault falls to the wayside much like Google Health did this year.”
- “Microsoft Bows Out of the Clinical Market,” Chilmark Research

In response, the HealthVault team met the questions head-on by holding their first “State of the Union” webinar on Jan. 13. The webinar, which was open to the public, focused on the HealthVault team’s vision for 2012, including plans for establishing a critical mass of users. Sean Nolan, chief architect of Microsoft’s Health Solutions Group, emphasized the team’s desire to see “people worldwide using online health tools to change health care.”

Several of our current Project HealthDesign teams are using HealthVault as a data repository and platform for participants to access their observations of daily living (ODLs) and other patient-generated data. That’s why we were interested to see where the HealthVault team would be focusing in the immediate future. Our teams have benefited from building on top of existing personal health platforms like HealthVault and TheCarrot.com. And although we don’t see these platforms as ends unto themselves, but rather as important components of a health data ecosystem (one that includes sensors and apps to record patient-generated data, personal health platforms to store and manage the data, dashboards and apps to review the data, and clinical EHR systems to bring data from patients’ daily lives into the clinical environment), there remains a critical and important role for platforms that accept and expose data from many sources.

We want to encourage everyone who’s working to advance this suite of health information tools, including HealthVault and TheCarrot.com, to hang in there. We know you’re ready to see more widespread interest and higher rates of consumer adoption. Frankly, we think the time for personal health platforms and a whole range of additional personal health tools is coming. We can’t wait to see consumers take charge of their health outside of clinical visits by diving into the health data ecosystem and putting the great tools you’re developing to work. Onward!

KevinMD Features Op-Ed from Past Project HealthDesign PI

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Visit KevinMD.com today to read “Using a mobile app to help chronic pain,” an op-ed by Roger Luckmann, M.D., M.P.H. Dr. Luckmann, who is a family physician, served as principal investigator of a past Project HealthDesign team from the University of Massachusetts Medical School. His team designed an electronic pain and activity diary to help patients document their daily pain experiences, medication regimens and physical activities. This system inspired Dr. Luckmann’s work on a similar mobile application that is set to launch in the Mac App Store soon. Read the article to hear Dr. Luckmann’s perspective on effectively managing pain by learning more about patients’ daily lives and activities.

Reflections from the First Two Months of Data Collection

Karen Cheng, Ph.D., Estrellita Co-Principal Investigator, University of California, Irvine

About two months ago, we did our first baseline interview. So far, four parents have started in the intervention group (and have received mobile devices with our app) and two parents in the comparison, or control, group. Two more participants are scheduled to start the study by the end of this week.

So far, our intervention participants have given us very positive feedback that they enjoy using the Estrellita system. The two families with the sickest babies seem to be the most consistent in recording their observations of daily living (ODLs), and one of those families even reported using their baby’s ODL data during an appointment with a specialist.

Not surprisingly, most of our participants identify themselves as early adopters of new technology — even if they cannot afford (and therefore do not have) the newest technology.  They report being drawn to this study for the opportunity to use the latest technology.

One interesting discovery was that parents were concerned about weighing their babies when the weather became colder. We were not seeing weight data come in regularly for most of the babies, and we gently reminded parents to let us know if they were having any trouble with the scales. One parent finally responded, explaining that her baby had been sick and she was reluctant to put him naked on a cold scale. An EDAC case manager contacted the parent and explained how to zero out the scale with a blanket and then put the baby on the scale. Problem solved, and weight data came in the next day!

As difficult as recruiting has been, scheduling the interviews has been just as difficult and maybe even more difficult. I spent much of last Friday afternoon in my car in the parking structure of CHOC Children's Hospital, waiting for a participant to return from an unexpected errand for our scheduled interview. My colleague, Karen Tang, spent all of Friday afternoon in a parking lot in another part of Orange County, waiting for a different participant. That participant missed her scheduled interview as well.

I look forward to our upcoming mid-study interviews, and hope to learn more about parents’ experiences with the Estrellita system and their overall strategies for managing their children’s health information in the midst of such hectic lives.

Learn more about the Estrellita (formerly FitBaby) project.
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Creative Commons photo by biblicone.

Build It and They Will Come: Can Technology Change Behavior?

Murrey G. Olmsted, Ph.D., BreathEasy Senior Methodological Advisor, RTI International

I recently heard a story on the news about the famed “Field of Dreams” farm in Dyersville, Iowa. This story reminded me of the approach taken with personal health records (PHRs) and health tracking devices over the past decade. Well intentioned clinicians, researchers, technologists, and others have brought many products to the market and have assumed that if you build a new device or PHR then people will use it to improve their health. As a result, we now have electronic devices that track steps taken, food consumed, water drunk, hours slept, and many other indicators of health and health-promoting behaviors. Now even our smartphones can provide many of these functions via apps that take advantage of motion sensors, GPS tracking, photo uploading, social networking, and barcode scanning. One common feature that most of these tools share is that they are tied to a record system such as a diary, tracking log, or PHR.

This all sounds great! More technology to enhance health that is portable, easy to use, and probably works on the smartphone I already have. If I were only to read the promotional literature, I might be convinced we are heading toward a golden age of health improvement with technology leading the way.

However, there is some trouble in the world of PHRs and health-promoting technologies:

• First, the annual CDC reports indicate that on average people are still significantly overweight, developing diabetes at alarming rates, and struggling with many chronic health conditions.
• Second, most devices or record systems don’t talk to each other. For instance, my smartphone tracks walking and running data on a website provided by a major sports manufacturer. The record is great in terms of helping me track my activity and communicate with my friends, but it does not connect to my own physician’s clinical electronic health record (EHR) or any other system that I have.
• Third, the PHR used at my doctor’s office provides tools for tracking my historical health data, but does not provide any help on what steps I need to take to enhance my health going forward; this is a common problem with PHRs, as most serve only as patient information portals rather than offering the full functionality needed.
• Fourth, the options for consumer-oriented PHRs are declining. For instance, Google Health announced earlier this year that they would be shutting down their PHR service at end of 2011 due to the lack of broad consumer adoption. As a result, I now have to choose between the PHR offered by my doctor or one of the few remaining national PHRs still available (e.g., Microsoft HealthVault, WebMD PHR, etc.).

So what’s the problem? I thought we had the technology? 

It turns out—not surprisingly—that behavior is difficult to change. Technology is great and people generally enjoy using it, but the impact is frequently not long-lasting unless fundamental behavior change occurs. To do that, the current crop of technological solutions will need to address not only the challenges listed above (in particular connecting all patient records), but will also need to help users change their behaviors. Published research is increasingly citing the need for behavior change as a key component of health-promoting technology. Also, authors are beginning to draw the distinction between PHRs that function as health information banks (e.g., look-up systems for lab results) and those that are truly ‘personal’ which can be customized to the needs of the user. What is really needed are tools that can serve the specific needs of users by guiding and encouraging them along in their journey toward behavior change, not just simply track their data and hold it for safekeeping. If the technology can make this shift, then we may start to see better results in those annual CDC reports.

Let us know what you think: How is behavior change key to successful health technology development and use?

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Being in India – A View from the Subcontinent

Anind Dey, Ph.D., dwellSense Principal Investigator, Carnegie Mellon University

I am visiting Southern India for six months — I came in June and will leave in late December. In keeping with my work on dwellSense, I have been looking for opportunities in India where advanced technologies, or at least better information, can be used to enhance clinical practice and personal decision-making. Very unscientifically, I have observed a few things that suggest that India is in need of such technology.

One observation is the huge number of advertisements for help for people with diabetes. Apparently, adult-onset diabetes has become a common issue as India’s growing middle class takes on more of a Western lifestyle and diet. As my cardiologist constantly tells me, “Indian bodies were not made to handle Western diets.”

Another issue is the huge number of people living below the poverty line. I don’t have exact numbers, but it is close to half a billion people, even with the poverty line set quite low (daily per person: 31 Indian Rupees in urban areas, which equates to $0.62 U.S. Dollars, and 25 Rupees in rural areas à $0.50 U.S. Dollars). Many of those individuals can’t afford medical care nor can they take the time to manage their health issues unless an acute problem develops. Therefore, the ability to collect observations of daily living (ODLs) in an unobtrusive, low-cost manner seems crucial.

A third observation is that although all doctors rely on self-reports from patients, homeopathic and ayurvedic doctors here seem to only rely on these reports and what they can observe during a visit. There are rarely, if any, tests that are conducted to confirm or substantiate the patient self-reports. This calls for the collection of data that would help the diagnostic process.

The main issues here are time, cost and literacy. Thinking around how to make technologies that require little manual effort, are cheap and don’t require a literate population or training, is what’s needed. These requirements might also apply to a number of other problems on the subcontinent, but they certainly apply here as well.

Learn more about the dwellSense project.
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