Terrific attendance at Project HealthDesign webinar

Wendy Swanberg, Communications Coordinator, Project HealthDesign National Program Office

More than 200 people signed up for last week’s webinar, "From the iPhone to the EMR: Can patients' personal health data help improve their clinical care?” to learn about the latest work by Project HealthDesign’s grantee teams.  Co-hosted by Stephen Downs of the Robert Wood Johnson Foundation (RWJF) and Patricia Flatley Brennan of the National Program Office, the webinar set a wider lens on the growing interest in weaving patient-generated data into the matrix of clinical health care.   

Steve Downs explained that as part of RWJF’s Pioneer Portfolio, Project HealthDesign was created to stimulate innovation in the area of personal health records.  “We laid out a vision where your medical record would serve as a platform” he explained, “and then lots of third-party apps could be tailored to your specific needs.”  The project’s five research teams took that vision and created applications tailored for patients with chronic conditions, from asthma to obesity to Alzheimer’s disease.

Project director Patti Brennan described what might be the most significant finding to arise from the project, the discovery that information from patients’ daily lives -- data about things like diet, mood and stress level – can play an important role in managing health care.  These “Observations of Daily Living,” or ODLs, became central to the grantees’ research projects and represent a significant, new category of patient-generated data.  Brennan also introduced a short video where members of each project team illustrated their projects’ findings and challenges.

Project investigator Katherine Kim described how her team’s iN Touch application helped young people struggling with obesity to become more engaged in managing their health and lifestyle.   Dr. Stephen Rothemich outlined findings of his team’s BreathEasy project, showing how ODLs can provide clinically useful information and in some cases can lead to changes in diagnosis or therapy. 

Finally, National Advisory Council member Dr. Michael Christopher Gibbons spoke eloquently of the critical role personal health records can play in a rapidly evolving society, where new approaches are needed to tend to the needs of a growing population of seniors, minorities, immigrants and the underserved.  

If you registered for the webinar but weren’t able to view it, follow this link and log in with the email address used at registration.

What Will Estrellita Be When She Grows Up?

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

As our team’s data collection winds down, it is inevitable that we begin thinking about the next steps for the project. The feedback from parents has been overwhelmingly positive. They have found the data entry to not be too burdensome and have found it useful to have the data so readily accessible. They report feeling cared for and feeling a sense of security that they have an easy way to communicate with the Early Developmental Assessment Center (EDAC) nurse case manager.

Through this work, we have evidence that parents are willing and able to record observations of daily living (ODLs) about their infants, even in the first few months the infant is home. When we first started the project, our team had a lot of concerns about overburdening the parents and we strived to keep low the number of ODLs they had to monitor. But our fears were not borne out. This may have a lot to do with how usable the Estrellita app is — many thanks go to Karen Tang for her excellent work in designing the mobile app!

One next step for our team is to work on refining the ODLs and possibly add more. We would like to work with more clinicians, such as pediatricians, nurses, and specialists, to dig deeper and learn more about the kinds of data that could help them remotely monitor infants and that could help parents prepare for a conversation with a clinician.

It may be that the Estrellita app needs to support a large range of ODLs, and then allow the clinician and the parents to decide together which ones the parents should track. (Kudos to the Chronology.MD team for their “ODL Prescription” idea.) A major challenge for us at the start of this project was identifying a common set of ODLs that were of interest to a variety of clinicians and parents. Perhaps a better strategy is to allow clinicians and parents to tailor their ODL-tracking to the particular needs of the infants.

Our team remains optimistic about the potential of ODL-tracking to improve the health of preterm infants. We hope to continue our work and even to expand it to other regions of the world. A newly released March of Dimes/WHO report called “Born Too Soon” describes the problem of preterm births worldwide; worldwide, more than 10% of births are preterm. The rate in low-income countries is even higher. There is much work to be done to save these babies’ lives and to improve their health outcomes.

If you are interested in partnering with us to improve the health of preterm infants, we’d love to talk with you. You can contact Gillian at gillianrh at ics.uci.edu or Karen Cheng at kgcheng at uci.edu.

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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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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.

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.
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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.

Interpreting the Absence of Data

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

Anyone doing research about records of any kind knows the challenges of handling missing data. We often hear about epidemiologists who struggle to find patterns in incomplete data sets, clinicians who carefully interview patients and family members to fill in the gaps in a medical record, and so on. This problem becomes particularly acute, however, when you are monitoring the data in real time. In some cases, missing data can mean we need to act in some way, but in other cases, it’s nothing to worry about. Two examples tell this story pretty well: developmental activities and appointments.

The Estrellita application asks parents to track the activities they do to bond with their babies, help them develop, and so on. When parents report doing these activities, we give them encouraging messages like “Great job!” and “Your baby loves it when you sing to him.” They also earn badges on their phones for each activity. In this case, because recording the data is actually part of an intervention to encourage these activities, lack of data requires additional intervention. So, if we get no data for a couple of days, then the application reminds parents to do some of the activities and to record them.

On the other hand, sometimes a lack of data doesn’t indicate a problem at all. The Estrellita application asks parents about their experiences with each clinical appointment a few hours after scheduled appointment times. If they don’t answer in that window, we dismiss the question, because self-report gets more unreliable the longer we wait. One of the mothers in our study wanted to be able to keep all her appointment information together, so she entered old appointments from before the study started. Because the appointments were so long ago, they didn’t trigger the additional questions about how they went. So, when one of our case managers logged in to check on this parent, it looked like she had missed a lot of appointments. The case manager was moments away from intervening when she realized that these appointments all predated the study enrollment date. If that baby had really missed that many appointments, there could have been something wrong.  In this case, however, the missing data were misleading. Luckily, we were able to make a fix for this situation quickly, and in the case of appointment data, we now have three categories: attended, did not attend, and no information.

Getting complete medical records in a setting in which people are trained to create and manage them (like hospitals) is difficult and complex. Doing the same in homes, schools, and other non-clinical settings can be downright impossible. Through our work, we hope to learn a little more about what to do when we have imperfect or missing data, and we are interested to see how the other projects handle this challenge as well.

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

The Challenges of Locating Parents of Preterm Infants

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

In the best of circumstances, it requires a whole lot of patience to recruit parents of preterm infants (born at <32 weeks gestational age). The parents are stressed, sleep-deprived, and may be caring for other children at home. We try to catch the parents in the Neonatal Intensive Care Unit (NICU) when they are visiting their babies. If we cannot find them there, we try to reach them by phone after their babies have been discharged from the NICU. We call and leave messages. We call and call again. For parents with stable jobs and stable home environments and who have active cell phones, we do eventually reach, well, some of them.

To complicate matters, we have been finding that a number of life factors make it even more difficult to reach and recruit these parents. There is the possibility of post-partum depression, for example, in the case of the mom whose voicemail inbox has been full for over a month. Some parents may have unstable home environments, as in the case of parents who do not have their own phone number and must be contacted through family members and friends; they may or may not live with these family members or friends, making it very difficult to pin down when they might be available at that number. And still other parents simply can no longer be reached at the numbers they gave the hospital upon discharge: in one case, the parent’s phone number stopped accepting calls within a few days of discharge.

Our colleagues at the Early Developmental Assessment Center (EDAC) face these challenges every day. EDAC and other high-risk infant follow-up programs across the country face overall attrition rates between 10-25%; rates are estimated to be nearly 50% for people of lower socioeconomic status. One key problem is the inability to reach parents to remind them to come in for appointments.

It’s a problem that appears deceivingly simple: contacting parents to tell them about the study or to remind them of their babies’ EDAC appointments. Yet it is surprisingly challenging and in the case of the EDAC appointment, it may have adverse effects on the babies’ health and development. Dini Baker, R.N., CHOC EDAC manager and Estrellita clinical partner, jokes about how nice it would be to give every baby a GPS tracking device upon leaving the NICU. I wonder if it might make it easier to contact the parents if U.S. cell phone plans allowed incoming texts or phone calls to be free – or if incoming texts or phone calls from certain phone numbers were free. For the parents whom we are able to contact and enroll in the study, our hope is that recording and sharing their babies’ ODLs with EDAC nurse case managers will increase their communication with EDAC and their likelihood of attending EDAC appointments, even after the study is over.

We’re continuing to wrestle with and brainstorm solutions for this problem. If you have any suggestions, we would love to hear them!

Learn more about the Estrellita (formerly FitBaby) project.
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Creating a Better World for Premature Infants

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

As of September 1, I will be 30 weeks pregnant, making my baby 2 full months older than many of the patients in the neonatal intensive care unit (NICU). When I’m in the NICU recruiting families for our study, I regularly walk around and imagine those infants still living inside their mothers, and sometimes I imagine what it would be like for my baby to have already arrived. Even though the nurses and parents in the NICU have positive attitudes, those thoughts can sometimes be hard to bear. It really makes you realize just what it means to be premature. At my latest ultrasound, my baby weighed in at nearly 3 pounds. Some of the infants in the NICU come out closer to 1 pound. They are living in a harsh environment when they should still be floating peacefully in their perfectly temperature-controlled “greenhouses.” They are forced to eat and drink when their peers are still living in a world where there is no hunger and no thirst. They process their own waste, whereas my baby still lives comfortably with no gas, no stomach aches, and no need for diaper changes. The womb has evolved to serve as a perfect place for growth, with little external stimulation, a message that is driven home by the dim lighting throughout the ward and signs around the NICU asking for “library voices” because little brains are developing. These highly specialized units are filled with elaborate technologies that simulate the prenatal environment as closely as possible.

Some nights, when I leave the NICU, I take a long look at my belly, beg the baby to stay inside as long as possible, and sometimes cry. Some nights, though, I think of the moms — like one I met last week in the NICU — who are amazingly optimistic, ready to do anything to make sure their little fighters get their best chances at living life to the fullest. These are the families who inspire us to keep working, and they are the ones who make me think that even if my baby decides to come really early, he will be okay. Many of even the most premature infants survive and even thrive, especially with the help of the many physiological and developmental interventions they are now provided.

Of course, we won’t know the full impact of the interventions we are creating for months or even years. Our prospects look good though. Early intervention, particularly low-cost interventions that are enabled by the kinds of technologies that we, other Project HealthDesign teams, and many other researchers and developers are creating, have the chance to provide substantial societal benefits such as decreased spending on special education and hospitalizations, as well as more healthy babies and children. Even more important, however, is the idea that these technologies and interventions give real families the hope that their children’s lives may not be impacted significantly by prematurity, as well as the tools to fight the odds.

Guest Post: Measuring a Patient's Skill and Confidence in Self-Management

Judith Hibbard, Dr.P.H., Professor Emerita, University of Oregon Department of Planning, Public Policy and Management

Patient Activation Measure

The Patient Activation Measure (PAM) is a 13-item questionnaire that measures the latent concept of activation. The PAM provides a score on a 0-100 scale.  Being activated refers to the degree to which an individual understands his or her own role in maintaining and promoting personal health and the extent to which he/she possesses a sense of self-efficacy for taking on this role. It is a global construct reflecting an individual’s overall knowledge, skill and confidence for self-management. Thus, the concept involves beliefs about one’s role, as well as knowledge and self-efficacy for taking stewardship of one’s own health.  Multiple studies have shown that activation scores are predictive of most health behaviors and many health outcomes. Further, studies show that activation is changeable, and that when activation changes, outcomes also change.

Read the following to learn more about the PAM:

• “Improving the Outcomes of Disease Management by Tailoring Care to the Patient’s Level of Activation” in The American Journal of Managed Care (pdf)
• “Do Increases in Patient Activation Result in Improved Self-Management Behaviors?” in Health Services Research
• “Is Patient Activation Associated With Future Health Outcomes and Healthcare Utilization Among Patients With Diabetes?” in The Journal of Ambulatory Care Management (pdf)
• "Measuring self-management of patients' and employees' health: Further validation of the Patient Activation Measure (PAM) based on its relation to employee characteristics" in Patient Education and Counseling

Clinician Support for Patient Activation Measure

The Clinician Support for Patient Activation Measure (CS-PAM), which was adapted from the PAM, assesses a clinician’s beliefs about the importance of patient self-management. The CS-PAM, like the PAM, was created using Rasch analysis and, like the PAM, has strong psychometric properties. Research shows the CS-PAM to be a reliable measurement tool that can assess and differentiate clinicians on their beliefs and attitudes about the importance of patient self-management and behaviors. Clinicians scoring higher on this measure are more likely to engage in a number of behaviors supportive of the patient role.

Read the following for more information about the CS-PAM:

• “The development and testing of a measure assessing clinician beliefs about patient self-management” in Health Expectations

For licensing information on the PAM or CS-PAM, or to learn about two versions of the PAM tailored to parents of chronic or well children, please contact Craig Swanson, Insignia Health founder, at [email protected].

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Editor’s note: We invited Dr. Hibbard to write this guest post because several of our current teams are using the PAM and/or CS-PAM with the patient and clinician participants in their studies. The following quote from FitBaby Co-Principal Investigator Karen Cheng, describes her team’s unique approach to using the PAM:

“Preterm birth that results in admittance to the Neonatal Intensive Care Unit is an unexpected shock for parents. Many of the parents find themselves overwhelmed by the sheer number of appointments with health care providers and navigating the medical system. In our FitBaby project, we hope to empower parents by giving them an easy way to record and access their baby’s ODL data, so that they can become active advocates in their child’s care. We decided to use the Patient Activation Measure (PAM) in our evaluation, because it captures the idea of patients becoming active advocates for their own care. We revised the language of the measure so that it reflects parents’ activation, and we hope to see increased parent activation among parents who use the FitBaby system, compared to parents who do not use it.”
-Karen Cheng, Ph.D., FitBaby Co-Principal Investigator, Charles Drew University of Medicine and Science