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.
Read more posts from the Estrellita (formerly FitBaby) team.

Creative Commons photo by MightyBoyBrian.

The iN Touch Approach to Device and Data Security

Holly Logan, iN Touch Project Coordinator, San Francisco State University

When we issued iPod Touch devices to participants, we knew some would be lost or stolen. We installed the Find iPhone application on each device that would allow us to locate a missing device, send messages, lock or wipe it.

The first time a participant came to us to inform us that their iPod Touch had been stolen, we took the necessary precautions: we locked it right away, sent a message to the iPod Touch indicating it was now stolen property and waited for it to hit Wi-Fi so that we’d be able to locate it. That was the catch. In order to be able to locate or wipe the device, it had to connect to Wi-Fi. And to throw in another step, when you choose to remote wipe the device, you can no longer locate it. So you have to take your chances here and work with the participant to see if they think they will be able to ask around and locate it, or think of who could have taken it and from where, etc. That was where it was tricky: Was it really stolen and gone forever, or was it temporarily misplaced?

When our first “situation” arose, the health coach had only spoken with the participant, who had said it was stolen. We decided to lock the device remotely and wait for it to hit Wi-Fi. In the meantime, we met with the participant to see what they thought about the device’s status. We asked “Do you know who stole it? Do you think you will be able to get it back?” When we determined that the participant knew who had stolen it, that they were adamant that they would never be able to retrieve it, and that they did not feel comfortable accusing the person, we decided to remotely wipe all data from the device.

However, we followed another process if we had reason to believe that the iPod Touch was simply lost, because we knew we might be able to recover the device. This happened with one participant who called and told us she had lost her iPod Touch after a day of running errands. She had searched her house high and low and looked in her car. The last place she remembered having seen it was when she was at Target.  I immediately locked the device and sent a message to it, which indicated that it was lost property and needed to be returned. Luckily the iPod Touch was going in and out of Wi-Fi, so I was able to see the location. When I told her the location, it turned out it was at her address. I asked her whether a neighbor could have taken it, or if she could have left it in her car. I had her go into each room and listen as I triggered a sound on her device. She still couldn’t find it. She decided to check her car, and I continued to play the sound. She finally heard it and found it jammed under the passenger seat of the car.  Thankfully, we had decided to search for it before remotely wiping it, otherwise all of her data would have been gone forever. When a device was reported lost, we decided it was important to give it at least a week to try to locate it. After that time, and if it was still lost, we decided it was a good idea to remotely wipe it as a security measure.

Unfortunately for all of the participants whose iPod Touches were stolen, none of them were returned, and we ended up wiping them all once they hit Wi-Fi. In each instance, the Find iPhone app has turned out to be a valuable tool that allows us to take the right steps to ensure the privacy and security of the participant’s health data and to  help the participant locate their device.

Images courtesy of Find iPhone app

Developer Challenge Roundup

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Gather a team of developers and innovators and plan to enter an upcoming developer challenge. The following developer challenges, organized by the Office of the National Coordinator for Health IT (ONC), provide several opportunities to engage in health-related topics that could help to improve health and health care.

ONC i2 Challenges

Health Innovations in Commuting Challenge

• The challenge: Create and submit a conceptual document that outlines ideas and models for improving the health of American commuters through better collection, exchange, and analysis of health data.
• Requirements and desired functionality: Challenge entrants will submit a conceptual document that outlines how health data may be appropriately collected from commuters in a safe and secure manner during the overall commute or during key milestones or events of the commute; how health data may be transmitted in a secure and standardized manner; how health data may be analyzed, either at an individual or population level.
• End of submission period: March 5
• Learn more or register for the challenge.

EHR Accessibility Module Challenge

• The challenge: Create and test a module or application that makes it easy for disabled users to access and interact with the health data stored in their EHRs.
• Requirements and desired functionality: The resulting app or module will enable individuals with disabilities to easily interact with their health data, link to relevant local or online communities or organizations, be able to download data from at least one EHR system, leverage and extend NwHIN standards and services including, but not limited to, transport (Direct, web services), content (Transitions of Care, CCD/CCR), and standardized vocabularies. The resulting module or app must also comply with web and other designated accessibility standards.
• End of submission period: July 23
• Learn more or register for the challenge.
  
  

ONC and Partnership for Patients Challenge

Discharge Follow-up Appointment Challenge

• The challenge: Develop a web-based tool that makes post-discharge follow-up appointment scheduling a more effective and shared process for care providers, patients and caregivers.
• Requirements and desired functionality: Develop the tool using user-centered design principles; incorporate messaging and EHR interface capabilities. Create a plan for how to scale and encourage adoption.
• End of submission period: April 30
• Learn more or register for the challenge.

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.

With 2,500 Miles Between Us: Learning a New Way to Work

­Sen Hirano, M.S., Ph.D. Student, Department of Informatics, University of California, Irvine

Sen Hirano has been on the Estrellita research team since the beginning of the project.  He spent the fall semester at the University of Toronto and is now back at UC, Irvine.

Not being in the same location as my team was certainly a new experience. While in Toronto, I expected to work on my own part of the Estrellita project with less of a focus on general project elements as I studied with a professor who specializes more in laboratory studies and building things.

Before I left, I tried to make sure that all features were finished so that I would not have to worry about that part of the study anymore. There was, however, one big issue. We had to migrate to a new server that was able to take more connections than the one we had been using. The server, out of some bad luck, did not fully arrive until after I left, leaving Karen Tang, who had not touched the server side yet, to set it all up. Except for the pain of installing all the security certificates we needed, and making them work correctly, the setup was relatively easy. Since I already did that for some other machines, I volunteered to finish that part. And because we were splitting the work, coordinating the use of the new machine was tricky. Like all virtual workstations, no one actually sits in front of it. In fact, like a normal server, it only has a power cord and an Ethernet cable plugged into it. So, as we took turns working on it, we tried to inform each other before our infrequent uses. Even so, my connection was interrupted once, so I just had Karen finish up for me (which, I am now realizing, is a great aspect of our team). After just a couple of days, the server setup was finished, and I was free to do my own work.

I didn’t hear too much from my team while I was away, so occasionally I would get nostalgic and do some routine testing to make sure things were performing well. Karen Tang did her best to filter and address the problems that arose, but ultimately there were things with which I was more familiar. In those instances, she would send me all the details she had gathered in her investigation of the problem and then we would have an instant message conversation about it and try to theorize what was wrong. At this point, I would often remember some relevant part of the code and spend just a few minutes fixing the problem. Then I would save the fix, sync the code, and have both of us test to make sure the fix worked. I occasionally had to proxy through her and have her ask questions or look into something else for me. Even though problems did come up, I’m really glad that none of them was a user interface problem, because those would have been much harder to explain or show long distance.

Learn more about the Estrellita (formerly FitBaby) project.
Read more posts from the Estrellita (formerly FitBaby) team.

BreathEasy by the Numbers

Barbara L. Massoudi, M.P.H., Ph.D., BreathEasy Principal Investigator, RTI International

We're excited to share a quick update now that we're just about at the halfway point in the intervention:

• We've recruited 30 patients who have been actively submitting data through our mobile app for about three months now.


• The patient-generated data is viewed by two types of clinicians participating in the study: family physicians (n=13) and nurses (n=7).


• The nurses review the data at least once a week, but some review more frequently. When they see something that concerns them, the nurses flag the data for additional review by the patient’s physician.


• Twenty-two patients have been in for clinical visits since the intervention phase began, but not necessarily to be seen for their asthma.


• Two patients have received new diagnoses as a result of the intervention.


• Sadly, two of the mobile phones have been stolen to date; one was retrieved and the other is being replaced. We've worked through the appropriate safeguards and reporting processes related to these losses.

Check back next month to learn about the many technical challenges we’ve had that relate to the phones.

Learn more about BreathEasy.
Read more posts from the BreathEasy team.