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.

Learn more about the Estrellita project.
Read more posts from the Estrellita team.

Project HealthDesign Director Shares Views on Patient Engagement in InformationWeek

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Head over to InformationWeek today to read “Is 2012 the year of online patients?,” which features insights from Project HealthDesign Director Patricia Flatley Brennan, Ph.D., R.N. In the article, Marianne Kolbasuk McGee explores what 2012 might hold for patient engagement in health care. She also interviewed Missy Krasner, a former Google Health executive. Read an excerpt below, or visit InformationWeek to read more.

“… doctors will have to convince patients to get more involved in their own healthcare--including using their own data to keep better tabs on their illnesses. In fact, payments tied to better patient outcomes--helped by smarter use of patient data-- is a big driver for more healthcare providers to participate in patient engagement initiatives, Brennan said.

Yet, with so much on doctors' plates as it is—"most doctors don't want a tsunami of new data" added to EHR and other systems from their patients' home health monitoring or wellness devices, said Brennan. That's especially true since most of this data doesn't warrant emergency care.

However, when there is an issue that requires immediate attention, Project HealthDesign teams have found that patients' monitoring data can be successfully sent to or shared with other clinicians, such as triage nurses or case managers, who can often help facilitate earlier intervention, or give feedback to patients without overwhelming doctors.”

Patient Uncertainty as a Motivator for Study Participation

Kathleen Morrison, M.P.H., Crohnology.MD Project Co-Director, Health Communities Foundation

Medical sociologists and public health experts have recognized the important role that patient uncertainty plays in the lives of patients with chronic diseases for decades.¹ Fifty years ago, the standard paradigm in the health care system was one of profound information asymmetry, whereby patients depended on physicians to inform them of all aspects of disease diagnosis and treatment. As the disease burden in the U.S. shifted from primarily acute disease to primarily chronic disease, the roles of patients and providers have barely changed. Because chronic disease has no cure, requires patient engagement for effective treatment, is best addressed if the patient is knowledgeable about consequences of the disease and its therapies, and is most effectively treated if the patient and provider collaborate, it requires a different level of patient engagement than acute disease.² These concepts of patient-centered care and patient management of their own information are at the heart of the Project HealthDesign mission, and promise to forever alter the role patients play in the treatment of their diseases.

Crohn’s disease disproportionately impacts young adults. The average age of onset is 15-30 years, a time when many people make the most important and long-lasting decisions of their lives. When we interviewed a small sample of our Crohnology.MD patient cohort, before we deployed the technology for the study, we asked them what the most difficult aspect of living with Crohn’s disease was. It is noteworthy that 100% of the patients interviewed cited uncertainty about their future disease symptoms as the most difficult aspect of living with Crohn’s and as the primary motive for wanting to participate in this study. Patients who were healthy at the time of the interview were worried about when they would get sick again, and how sick they might become. Patients who were suffering from active disease symptoms worried about the unknown: How bad would their symptoms get,? When would their symptoms end? A couple of patients noted that, in some ways, it was easier when there was a disease flare, because then there was no uncertainty – it was clear that the only option was to stay in bed. As the interviewer, my heart went out to our patients; as a researcher, I felt that they were spot-on in deciding to enter this study. Our patients have chosen the observations of daily living (ODLs) that they feel are relevant to their life and health, and they are now able to view the ODL data they’ve recorded and look for ODL interactions and trends in the mobile app we developed for this study.

Going forward, we hope that the patients who use our technology will be able to identify ODLs (either individually or in groups) that directly impact both wellness and disease severity. We would also hope to see improved patient/provider collaboration, and perhaps even time and cost savings associated with more efficient (or reduced) clinical appointments. In the short run, however, if we can help patients reduce the stress associated with their uncertainty about their disease, by engaging them in monitoring and reviewing their data and providing an avenue to make associations between ODLs, medications, and well-being, then perhaps we will be addressing the patients’ #1 concern. Not too shabby.

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¹ Davis F. Uncertainty in Medical Prognosis, Clinical and Functional. Am J of Soc 1960.

² Holman H , Lorig K. Patient Self-Management: A Key to Effectiveness and Efficiency in Care of Chronic Disease. Pub Hlth Rep 2004;119:239-243.

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Learn more about the Crohnology.MD project.
Read more posts from the Crohnology.MD team.

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.
Read more posts from the dwellSense team.

Report Details Teams’ Technical Architectures and Implementations

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

A new report from Project HealthDesign technical partners Sujansky & Associates details the technical architectures and implementations employed by each of the project’s five current research teams. For each team, the report describes which observations of daily living (ODLs) patients are tracking, the technologies the patients use to collect ODL data, how the resulting ODL data is interpreted by the teams’ technologies, and how patients and clinicians are able to review the ODL data.

The report concludes with an overview of patterns and lessons common across the five teams’ technical implementations, including observations about:

• Third-party platform integration
• Integration of ODLs with clinical systems
• Battery life
• Data caching on mobile devices

For a comprehensive overview of the teams’ technical architectures and implementations, read the full draft report, “Project HealthDesign: Technical Architectures and Implementations.”

For a quick overview of the teams’ technical architecture diagrams, view the presentation below:

Project HealthDesign -Technical Architecture Diagrams

 

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Report Illuminates Early Findings and Challenges from Project HealthDesign

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office 

Read the latest report from Project HealthDesign to learn what our five research teams have experienced as they’ve worked with patients to capture observations of daily living (ODLs) and integrate the resulting data into clinical care.

As mobile health apps and patient self-tracking movements continue to spread, the health and health care fields are ripe for innovation. Project HealthDesign explores how patient-sourced data might contribute a new richness to personal health records (PHRs) and patient-clinician interactions.

Project HealthDesign: Early Findings and Challenges

Early insights:

• Chronically ill patients are eager to try new technologies that help them take charge of their health.
• Each patient is different, so personal health applications need to be customizable.
• New clinical workflows are needed in order to incorporate ODLs into clinical practice.
• Reviewing ODL data can highlight day-to-day variation for patients and clinicians.

Early challenges:

• It’s not yet clear what the best approaches will be for storing ODL data.
• Privacy and security issues continue to be challenging.

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Sarah’s Story: Six Months of Determination, Health Coaching and Observations of Daily Living

Katherine Kim, M.P.H., MBA, iN Touch Principal Investigator, San Francisco State University

Sarah* was a 214-pound, pre-diabetic high school student who hated comments her peers made about her appearance. When she first met the iN Touch health coach, Sarah shared that she regularly ate fast food, drank soda and cut class. She wanted to focus on eating healthier and exercising. Sarah and the coach discussed different types of exercises and worked together to create backup plans in case she was unable to do her intended exercise.

Sarah planned to record her observations of daily living (ODLs) about her food, exercise, socializing and mood in TheCarrot.com’s iN Touch application a few times a week. She began recording her ODLs and found it was easy enough to do. She also used the notes section to intensively journal about her path to a healthier life. Sarah texted the health coach and took advantage of in-person coaching visits to talk about her challenges, strategies and progress. She also continued to see her regular physicians and nurses.

By the third month of participation she reported that she was cutting fewer classes. She now regularly power walks with hand weights and started taking dance classes over the summer. She has eliminated fast food, chips and sodas from her diet. Instead, she carries healthy snacks in her purse and drinks only water. At the end of 6 months of participation, Sarah has lost more than 20 pounds.

Sarah is one of the first wave of participants to complete the study this month. While we wait to collect our complete set of evaluation data, we looked at frequency of usage of the technology to see if we could find clues to Sarah’s success. To date, 33 participants have entered 1,794 ODLs, not including notes. (Note: most participants have not yet completed their six months.) Recording frequency varied, and individuals ranged from one ODL recorded to 230 ODLs recorded with an average of 54 ODLs recorded. Sarah recorded 117.

Sarah’s size is not the only change. “I have confidence,” she says,  “I feel this is my year. Now if people want to come at me with drama, I’m just like, ‘I don’t care.’ I’m going across that stage. I’m going to a 4-year college. Twelfth grade is my serious year.”  She says she plans to continue using her iPod Touch and free TheCarrot.com application to improve her health.

*Not her real name.

Observing Fussy Babies and Their Fussy ODLs

 Karen Tang, Ph.D., FitBaby Post-Doctoral Researcher, University of California at Irvine

A critical component of FitBaby has been determining which observations of daily living (ODLs) to support. For infants, it’s difficult to know exactly how they’re feeling, so their ODLs tend to rely on objective metrics like weight and diaper changes (both of which we support). However, we’re also interested in capturing other infant-related ODLs, especially ones that are meaningful to parents and can serve as meaningful indicators for clinical purposes. 

Evidence from our pilot interviews suggests that caregivers often refer to “fussiness” when describing their baby’s health problems. First-time parents, in particular, often sense that something is wrong, but don’t have enough experience to know what might be causing the fussiness. In these cases, caregivers can find it overwhelming to track ODLs because they’re unsure of which behaviors they should be capturing; after all, the fussiness could be related to common problems such as food sensitivities or tiredness, or it could be indicative of something much more serious. So, fussiness is one of our ODLs. To capture how fussy a baby is, we use a scale of 0-10, where 0 means that the baby is not at all fussy. While it’s true that a self-reported fussiness measure is subjective and will likely differ among caregivers – much like pain or fatigue measures – it is the relative change in fussiness that’s important, rather than the absolute values.

The visualizations of fussiness data can help caregivers diagnose problems. Many common causes of fussiness can be linked to routines. For example, if the baby is typically fussy around the same time of day, this may suggest that the fussiness is tied to the baby’s routines (e.g., his feeding or sleep schedule), rather than a serious health problem. Our charts also allow caregivers to reflect on how long their infant has been fussy. For example, if the baby is normally fussy for only two hours each day, but is fussy for eight hours one day, then this observed increase in fussiness might indicate a health condition that's worth discussing with clinicians. Our hope is that clinicians will also find that the chart visualizations provide an easy way to interpret and understand a baby’s past fussiness behaviors or to link these behaviors to other indicators and ODLs.

It’s been exciting to see the fussiness ODL emerge out of our pilot interviews and be integrated into our application. When we’ve given demos of our app, people instantly gravitate towards the fussiness ODL as something they relate to and can easily understand. We hope our participants will also find it useful to track and share this information with their clinicians.

Watch the video below, featuring FitBaby Principal Investigator Gillian Hayes, to learn more about our Fussy-o-meter:

Selecting Observations of Daily Living (ODLs) – Patient and Provider Priorities

Kathleen Morrison, M.P.H., Crohnology.MD Project Co-Director, Health Communities Foundation

Crohn’s disease is a painful and often burdensome disease. Although debate is ongoing as to the exact cause of the disease, we do know that there is a genetic component, as well as an environmental component to the disease. We know that the disease is nearly nonexistent in Southeast Asia, but that when Southeast Asians move to the U.S., we start to see Crohn’s disease in that population. Jonathan Terdiman, M.D., our clinical principal investigator, describes the disease as “… a war going on between different types bacteria in the intestines of an individual.” The standard of treatment varies, depending on the severity and extent of the disease in the patient. For this reason, Crohn’s disease provides a perfect opportunity for patients and providers to explore the usefulness of observations of daily living (ODLs) in promoting increased collaboration and communication in the understanding and treatment of the disease.

We knew that in order to capture the ODLs that would be most useful for our project, we had to get input from both patients and providers. Prior to our focus groups with both of these groups, we reviewed the literature, taking into account the most often used of quality of life indices for Crohn’s disease – the Crohn’s Disease Activity Index and the Harvey-Bradshaw index. In addition, we reviewed the quality of life markers identified in the Inflammatory Bowel Disease Questionnaire (IBDQ). We selected a baseline set of ODLs based on the markers that had been identified as most useful and presented them (separately) to our patient and provider focus groups. We then asked them to rank the ODLs.

Although ODLs are patient-directed observations, we wanted to make sure that the providers felt that the ODL information being collected would help inform their treatment decisions. Our goal is to create an ODL collection system that is both personally relevant to patients and clinically useful for providers. Our budget allows us to identify and collect data on 6-10 standardized ODLs—including a few biometric measures such as weight and test results—and we were very curious about how much overlap there would be between the patient and provider focus groups.

Provider Priorities

Not surprisingly, there were both similarities and clear differences between the priorities of the representative focus groups. Both groups agreed upon the importance of pain, activity level, bowel movements (BM), medications, weight and test results. Yet the providers acknowledged that the level of ODL importance really does vary by patient. For example, although BM is an important indicator of Crohn’s severity, many different aspects of the disease can impact BM, including where the disease is impacting the colon, how far the disease has progressed and food intake. Because of the entirely subjective nature of this marker, the providers broadly felt that it would not be one of the most useful indicators to follow in this study. Similarly, they felt that energy level and mood were subjective measures that would vary by patient and that these ODLs would not necessarily assist the providers in their treatment decisions.

Patient Priorities

The patients preferred that the ODLs be very individualized. The women in the group wanted to track their menstrual cycles in order to see the correlation with pain and other indicators. This topic never came up in our discussion with providers. Several patients mentioned that missed workdays could be used as a proxy for pain, missed sleep or BM complications. The patients felt that energy level and mood were directly correlated with how sick they were and how motivated they were to exercise and work; they felt strongly that these indicators were related to their pain and disease symptoms. This group of patients was interested in investigating the interactions between two or more ODLs and the biometric measures, including medications taken. The patients had strong ideas about which ODLs they would track and why. In fact, some of them had already been tracking their symptoms for some time. Interestingly, the patients all commented that they would be more likely to collect ODL information when they were not feeling well. “When I feel good, I want to forget that I have Crohn’s disease, and I want to stay as far away as possible from it,” said one patient.

A Collaboration Between Patients and Providers

It took several weeks for our team to identify our final list of ODLs to be tracked.  We took into consideration factors identified in the literature; by the providers; and by the patients. Given the wide range of patient preferences about which ODLs to track, as well as Dr. Terdiman’s recommendation that the patients and providers should work together to identify the most relevant ODLs to track, it seems that a collaborative process is already in the works. In order to accommodate the ODLs that patients wish to track, but that are not on our official ODL list, our developers have introduced journaling functionality, whereby patients will be able to add and tag other ODL data that they deem important and relevant to follow. We hope that both patients and providers find the process of ODL identification and collection to be illuminating and rewarding.

Learn more about the Chronology.MD project.
Read more posts from the Chronology.MD team.

Project HealthDesign Update on Pioneering Ideas Blog

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Visit the Pioneering Ideas blog today for an update about Project HealthDesign, titled "Noodles of ODLs." Read an excerpt below then visit the original post to read the rest and watch video updates from Steve Downs, Patricia Flatley Brennan and Anind Dey.

"Patients participating in Project HealthDesign studies are using technology to track personally meaningful information about their daily feelings, thoughts, moods and behaviors — or observations of daily living (ODLs) — and sharing this information with providers. Currently, nearly all of our project teams are beginning the testing phase, recruiting patients and providers to participate in the studies. Part of their task is to figure out which ODLs are relevant to share; another job is to share them in ways that are meaningful to all involved."