If Specificity Is the Solution, ODLs Are Key

Sara Koliner, Policy Analysis Project Assistant, Project HealthDesign National Program Office

Mobile apps have proven to be valuable tools for collecting ODLS in this last round of Project HealthDesign. While the benefits are clear, however, creators of mobile apps must contend with a complicated interplay of safety, cost, usability, and accessibility in order to produce high quality software. Weakening these foundations can lead to misuse by consumers, or rejection by practitioners. On the other hand, overabundance of requirements can stall progress and hinder the utility of these applications.

A few weeks ago, the Healthcare Information and Management Systems Society (HIMSS) held its 13^th annual conference in New Orleans, LA. In one notable e-session, presenters Katharina Steininger and David Rückel outlined the values of key stakeholders in mobile health applications, and thus the priorities that should be used in applications themselves. A copy of their slideshow is available here.

In “Mobile Health Applications—Strategic Stakeholders’ Perspectives,” Steininger and Rückel name key stakeholders in mobile health applications: patients, practitioners in private practices, emergency medical services and mobile homecare, hospitals and nursing homes, application developers, and statutory and private health insurances. While the stakeholders often have common aims such as higher quality care and improved security, their priorities are unique and often contradictory.

The solution here is specificity: choose your stakeholders, and this will define your priorities. While the presenters describe doctor-to-patient and doctor-to-doctor style applications, they leave out the most relevant setting: patient-to-doctor communication.

Project HealthDesign teams inherently centered themselves around patients by designing mobile apps to use the data that embodies specificity: ODLs. By incorporating Observations of Daily Living, developers automatically look to the values of patients, and so produce a more effective application. Applications like BreathEasy even provided a separate dashboard for clinicians, allowing both the smartphone and computer-based portals to serve the exact needs of targeted users.

A final note on the importance of specificity: On Tuesday, March 19, the Energy and Commerce Committee hosted a hearing regarding the regulation of mobile health applications. In view of whether mobile health applications should be considered medical devices, gray areas indeed exist in applications that intend to replace monitors already used in the clinical setting. Applications dedicated to the capture of ODLs, on the other hand, add entirely unique patient-defined and patient-generated data to the workflow. The specifically non-clinical nature of ODLS requires a different framing of the quality question—one that addresses both the reliability from the patient’s perspective and accountability on the part of the clinicians. If quality standards are to be applied to this type of mobile app, they will have to be quite different from the standards currently used for clinical care metrics: if not necessarily relaxed, they must account for the idiosyncrasies of data shaped at the level of the individual.

Ingenuity and flexibility are essential to the development of quality mobile applications. As long as developers remain keyed into the patient perspective, they should be encouraged to use these faculties as effectively as possible.

Read more posts about legal and policy issues

ChronologyMD sees great results from “participatory design” process

Over the next six months as Project HealthDesign draws to a close, our grantee teams will be posting final reflections on their completed research.  Read here about the innovative work of our Chronology.MD team.

ChronologyMD: Reflections on the Project and Next Steps

By Linda Neuhauser, Chronology.MD Co-Principal Investigator, University of California, Berkeley; Kathleen Morrison, Chronology.MD Project Director, Healthy Communities Foundation, University of California, Berkeley; Deryk Van Brunt, Chronology.MD Co-Principal Investigator, Healthy Communities Foundation; Jonathan Terdiman,Co-Principal Investigator, University of California at San Francisco; Marcos Athanasoulis, Chronology.MD Chief Technology Officer, Healthy Communities Foundation; Nikolai Kirienko, Chronology.MD Co-Project Director, University of California, Berkeley; Elena Rodriguez Fisher, Clinical Partner, UCSF Inflammatory Bowel Disease Center; and Daniel Bernstein, Founder, Medic8 Manager LLC, Product Manager, iMedic8

Background: The goal of the ChronologyMD project was to use participatory processes with patients with Crohn’s disease and their healthcare providers to develop eHealth applications that would improve both patients’ management of their disease and also shared decision-making with their clinicians. Our project was guided by a “design science” theoretical framework, which advocates intensive, iterative, user-centered design, coupled with continuous evaluation. We engaged 30 patients with Crohn’s disease, their providers, and our project team to co-design an application to enable patients to input information about their “observations of daily living” (ODLs) into an iPad, iPhone or other device. The selected ODLs included information about health symptoms, medication adherence, activity, sleep, energy, laboratory data, and journaling related to their health and wellbeing. An electronic scale and an activity and sleep monitor allowed patients to upload that information automatically to their device. The project also developed a second application that provided a visual display of the data to help patients and providers understand ODL changes and interactions over time.  The ChronologyMD applications were developed on the iMedic8 software platform and deployment was managed by Medic8 Manager LLC.

Outcomes and Lessons Learned: The intensive participatory design and continuous evaluation methods were critical to developing effective applications. During the year of designing the applications, we used focus groups, personal interviews, usability testing, training observations, and other methods to create and refine the applications. Ongoing input from patients allowed us to adjust and modify our data collection and visualization technologies, and provided us with insight and information that will be useful in the future. For example, we learned that some patients wanted very granular information about their health that they could input multiple times a day, and wanted the ability to create new ODLs. Patients were very enthusiastic about the ChronologyMD applications and inputted over 28,000 ODLs over an eight-month period. The percentage of patients who tracked their ODL-type symptoms and behaviors increased from 40% before using the system to 92% after eight months of using it.

Patients were highly enthusiastic about the system and reported many positive effects, including improved understanding and tracking of important symptoms, medication adherence, and health behaviors. One of the most important findings was that this system enabled patients to see important associations among health factors, and make changes accordingly. For example, patients reported that they noticed that when they got more sleep and exercise, and took their medications, they felt better, could reduce pain medications, and manage their disease and life better. We concluded that people often require very personalized information to motivate them to make specific healthy changes. Clinicians in the study also concluded that the system greatly improved the quality of patient-provider health care visits. We learned that the opportunity for our Crohn’s patients to provide a more thorough and comprehensive patient narrative at the time of the clinical appointment proved to be useful and, in some cases, essential in helping patients and providers make better decisions regarding patient care.

Next Steps: Going forward, we see a lot of opportunity for innovation and expansion of this technology. The vast majority of patients in the study would like to continue using the system in the future and other patients with Crohn’s have asked how they could have access to the system. Through the participatory design process, they proposed changes to create an enhanced system in the future. We gained a more complete understanding of the challenges of developing a mobile health platform, and realized the importance of having a system revision that could collect data in a format that would also facilitate data analysis.  Clearly, the ability for patients to collect and view ODL data has applications for just about any chronic disease and we have had conversations with potential developers interested in adapting this approach for chronic pain, Alzheimer’s, cancer and other health issues. Our challenge is to find funding to refine the system and do a randomized controlled study of a larger number of patients, including incorporating patient data into the electronic health record to demonstrate “meaningful use” for long-term sustainability.

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

A Partnership, not a Prescription – Observations from an Alternative Medicine Practitioner

Rebecca Dymzarov, Policy Analylst Project Assistant, Project HealthDesign National Program Office

In addition to being the policy analyst project assistant here at Project HealthDesign, I am also a licensed practitioner of Alternative Medicine and Acupuncture. Engaging patients to be active participants in improving their health, and identifying health problems through incorporating Observations of Daily Living as a diagnostic tool, is a tried and extremely useful method in the arena of holistic medicine. It is extremely exciting to see this concept enter the main stream through Project HealthDesign.

When a patient comes to me with a health concern, I interview them and obtain the necessary information to formulate a tentative diagnosis and to create a treatment plan. This interview process is an in-depth evaluation of just about every aspect of the patient’s health and lifestyle. The answers to these questions provide valuable input into the diagnostic process.  It is usually a voyage of discovery -- every symptom, and how those symptoms change through the treatment process, provide clues both to me and the patient on how to improve their health.

I am always surprised by how difficult it is for people to answer questions about themselves at the beginning of treatment. Questions like; “how often do you experience pain? have a headache? where do you feel the pain? how often do you feel sad? how often do you have a bowel movement? how often do you wake up during the night? do you have less energy after you eat certain foods? do you feel sick after you eat certain foods?” are often answered with “I don’t know.”  There are always exceptions, but most people aren’t that tuned in with what is happening with their bodies. No one has ever asked them to pay attention to these things. 

Just like everything else in life, to be good at something takes practice. So people who work with me practice making observations about their daily lives. I often ask my patients to keep a journal. These journals  capture the same type of information captured by some of Project HealthDesign’s mobile applications.  Through the interview process, we identify and prioritize what observations they will track by identifying those that are impacting the patient most negatively. In my experience, when the process of discovery and the treatment planning is a partnership instead of a prescription, my patients are more likely to follow through with keeping their journals and following other recommendations.

I have the advantage of seeing my patients regularly and for more than 15 minutes at a time.  During these regular visits, patients get really good at answering my questions and start to notice patterns about their health on their own.  It is easy to see in my patients that a sense of empowerment comes along with actively participating in the discovery of what a healthy lifestyle is for them.  Also, by closely following changes in their daily lives it is easier for them to identify those things that improve their health or make it worse. For many patients, having a record of how their progression through treatment, including lifestyle changes, has positively impacted their health provides continued motivation for them to be their own advocate, and to keep making positive changes.

In addition to being the policy analyst project assistant here at Project HealthDesign, I am also a licensed practitioner of Alternative Medicine and Acupuncture. Engaging patients to be active participants in improving their health, and identifying health problems through incorporating Observations of Daily Living as a diagnostic tool, is a tried and extremely useful method in the arena of holistic medicine. It is extremely exciting to see this concept enter the main stream through Project HealthDesign.

When a patient comes to me with a health concern, I interview them and obtain the necessary information to formulate a tentative diagnosis and to create a treatment plan. This interview process is an in-depth evaluation of just about every aspect of the patient’s health and lifestyle. The answers to these questions provide valuable input into the diagnostic process.  It is usually a voyage of discovery -- every symptom, and how those symptoms change through the treatment process, provide clues both to me and the patient on how to improve their health.

I am always surprised by how difficult it is for people to answer questions about themselves at the beginning of treatment. Questions like; “how often do you experience pain? have a headache? where do you feel the pain? how often do you feel sad? how often do you have a bowl movement? how often do you wake up during the night? do you have less energy after you eat certain foods? do you feel sick after you eat certain foods?” are often answered with “I don’t know.”  There are always exceptions, but most people aren’t that tuned in with what is happening with their bodies. No one has ever asked them to pay attention to these things. 

Just like everything else in life, to be good at something it takes practice. So people who work with me practice making observations about their daily lives. I often ask my patients to keep a journal. These journals  capture the same type of information captured by some of Project HealthDesign’s mobile applications.  Through the interview process, we identify and prioritize what observations they will track by identifying those that are impacting the patient most negatively. In my experience, when the process of discovery and the treatment plan itself is a partnership instead of a prescription, my patients are more likely to follow through with keeping their journals and following other recommendations.

I have the advantage of seeing my patients regularly and for more than 15 minutes at a time.  During these regular visits, patients get really good at answering my questions and start to notice patterns about their health on their own.  It is easy to see in my patients that a sense of empowerment comes along with actively participating in the discovery of what a healthy lifestyle is for them.  Also, by closely following changes in their daily lives it is easier for them to identify those things that improve their health or make it worse. For many patients, having a record of how their progression through treatment, including lifestyle changes, has positively impacted their health provides continued motivation for them to be their own advocate, and to keep making positive changes.

Thoughts from Project HealthDesign's student assistant (and future physician)

Madhu Rajendran, student assistant, National Program Office

I am Madhu Rajendran, a sophomore here at University of Wisconsin-Madison and a student assistant at Project HealthDesign. I am currently studying biochemistry and math, as both fields are of great interest to me. My plans are to go to medical school when I am done with my undergraduate studies.  I started to work at Project HealthDesign in the beginning of October 2011, when I was looking for jobs that had some relation to helping patients.

Like a lot of pre-med students, one thing I would like to change is the way patients get treated. My experience as a student assistant with the NPO has given me the chance to be a part of an effort to make those changes happen.

Before working with Project HealthDesign I had a very different view of the physician-patient relationship. My belief was that in order to better aid the patients, the patients would talk to the physician about their medical problems, and the physician would provide solutions to solve the medical problems.  Throughout this process, the patients would follow the physician’s guidelines, no questions asked!

But my work with Project HealthDesign has done more than just shatter my view about the physician-patient relationship; it has also helped me to see who plays a bigger role. Even though the physicians are experts in healthcare, patients are experts in their own lives. The patients know much more about themselves than the physicians do. So the patients play a bigger role, and the role of the physicians is to cure the patients based on the information that they provide.

Project HealthDesign’s grantee teams’ work on identifying Observations of Daily Living, or ODLs, has also influenced my thoughts on how I could be a better future physician.  Since ODLs are recorded by the patients themselves, they tell a better story about what has been going on in the lives of patients, additional to the patient’s verbal reports.  Even though ODLs are defined by patients and are most commonly used for self-management of health, ODLs can play a vital role during clinical decision making.  As someone who plans to become a physician, I hope ODLs will become part of the medical picture by the time I start my career.  I think ODLs will provide me a more complete and holistic view of the patient as a whole person.

Working as a student assistant for Project HealthDesign has been a great opportunity for me, as it has changed the way I could better serve my patients.  Because of my experience here, I hope to be part of a new generation of physicians who enter the field with the knowledge that patients belong at the center of their own health care, not on the periphery. 

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.

Great Findings to Come from Project HealthDesign’s Round 2 Teams

Project HealthDesign National Program Office

At the end of June, Project HealthDesign’s final Round 2 grantee team wrapped up its evaluation study. It’s been a great experience working with five very unique teams that have taken five distinct approaches to examining health in everyday living. Each team has investigated the impact as their patient participants have used mobile devices and/or sensors to track data about their observations of daily living (ODLs) and have shared visualizations or select ODL data with clinicians. We anticipate a great final report and slate of publications coming out of this work, so be sure to keep an eye out over the coming months.

In the meantime, you can download artifacts from these teams on the Round 2 (2010-12) Artifacts page. Nearly all of these artifacts are open-source (Creative Commons 3.0 or LGPL); they range from source code for mobile apps and web dashboards to screenshots of apps, user guides for patient and clinician participants, and questionnaires for surveys and focus groups.

Round 2 of Project HealthDesign has laid important groundwork for future efforts relating to mhealth and patient-generated data. Additionally, we’ve learned a lot about the policy issues related to patient-generated data and its incorporation into clinical decision-making. “Lessons from Project HealthDesign: Strategies for Safeguarding Patient-Generated Health Information Created or Shared Through Mobile Devices” (pdf) is the first of several papers that will touch on the policy issues that have impacted the five Round 2 teams.

The intent behind this blog has been to share challenges and promising practices in the midst of our work. We’ve always told the grantee team members who have blogged that the expectation isn’t that a post is the final word on the subject; instead, each post is a snapshot of the author’s thinking on a particular topic and at a particular point in a study. We hope you’ve enjoyed the many, many insightful posts from the Round 2 grantee teams.

In case you missed any, or if you’re interested in seeing how a particular team’s thinking evolved over time, take the time to look back at posts from each team:

• BreathEasy
  Read posts from the BreathEasy team
  
  
• Chronology.MD
  Read posts from the Chronology.MD team
  
  
• dwellSense
  Read posts from the dwellSense team
  
  
• Estrellita
  Read posts from the Estrellita team
  
  
• iN Touch
  Read posts from the iN Touch team

Questions? Comments? Please leave a comment or contact the National Program Office at [email protected].

Chronology.MD: Lessons Learned and Next Steps

Kathleen Morrison, Chronology.MD Project Director, Healthy Communities Foundation; Linda Neuhauser, Chronology.MD Co-Principal Investigator, University of California, Berkeley; Deryk Van Brunt, Chronology.MD Co-Principal Investigator, Healthy Communities Foundation; Marcos Athanasoulis, Chronology.MD Chief Technology Officer, Healthy Communities Foundation

Crohn’s disease presents major treatment challenges for patients and clinicians to manage. The Chronology.MD project has developed an interactive mobile system in which patients with Crohn’s disease can input important observations of daily living (ODLs) such as symptoms, medication adherence, sleep, and activity, and share these data with clinicians during visits to enhance treatment decisions. In our last post, we reviewed preliminary data from patient responses to our online survey. We found that the vast majority of our patient participants liked our system and used it. We learned that patients had diverse views of the value of specific ODLs, and that age and sex may influence their views of what is personally relevant. For example, patients ages 40-50 were slightly more likely to track stress, while patients ages 20-30 were slightly more likely to track pain. Women reported that menstrual cycle information would have been an important ODL. Because our small cohort comprised only 30 patients, this information is not statistically significant, but it does help inform future research and practice.

We learned from patient interviews that each patient has a unique story of their illness, as well as unique priorities. Tracking ODLs often helped patient participants identify important factors (e.g., activity, sleep, stress, medications) that influence their symptoms and pain. Our use of contextual inquiry (focus groups, surveys, and interviews) allowed us a more comprehensive understanding of important ODLs and the factors that influence a patient’s use of a mobile device for ODL collection.

Clinician participants primarily saw the Chronology.MD system as an important patient app – a data collection and visualization system that helps patients focus and prepare for office visits. If patients are more focused, then the visit is more efficient and both patients and providers will be more satisfied with the encounter. Our clinician participants suggested that we incorporate the ODL data visualization graphs into the University of California San Francisco clinic’s Epic EHR system in real time. That way, the provider wouldn’t be overwhelmed by too much data in their EHR interface outside of the appointment. This way, providers would pull up the data at the time of the appointment, and the patients could discuss the ODLs that were most important since the last visit.

Because we developed our technology during the study and used iterative participatory design processes, we had a lot to do in a relatively short amount of time. Going forward, we know that our patients would like a single app for data collection and visualization, along with the ability to enter ODL data via SMS text message. We also learned that system bugs and crashes are a deterrent to utilization, and that a more comprehensive list of ODLs should be included. Our patients are committed to finding a way to continue using and improving the system, and many have reported that the use of the system is what keeps them healthier, more pain-free, and able to reduce the use of narcotic pain-killers.

Going forward, our clinicians would like to see this app add even more utility to the clinical visit. For example, incorporating data that address validated indices such as the CDAI (Crohn’s Disease Activity Index) and/or the Harvey-Bradshaw index (a simpler Crohn’s disease index), would permit providers to review these index scores with patients in real time and would allow patients to monitor their scores on a daily or weekly basis. Clinicians said that incorporating one or both of these indices would greatly enhance their ability to collaborate with patients.

In addition, our clinicians felt that this app could be used to equip patients with important information about Crohn’s disease – including where the disease occurs, the course of the disease, how to determine remission, the importance of medication adherence, the benefits of biologic vs. steroid drugs, and the importance of paying attention to general health maintenance (e.g., up-to-date vaccinations, pap-smears, and skin cancer screening). Ultimately, if this app could help better educate, inform, and prepare patients for office visits (including visits to other specialty providers not well-versed in Crohn’s disease) and if it could include more detailed information about medications, lab tests, scans (e.g., last colonoscopy, GI involvement), and symptoms to discuss, then providers would see it not only as an important patient app, but also as a very useful provider app. Clinicians told us that this app could  change the standard of care for Crohn’s.

We have learned from this pilot study that both clinicians and patients are interested in finding the balance between collecting and tracking data that is important to each group. Neither group wants to collect extraneous data, nor do they want to collect data for extended periods of time. The balance point between clinician and patient, and the ODLs that are personally relevant to patients, as well as clinically significant for providers, we call the ODL Prescription (ODL Rx). We are exploring support for future studies that will build on pilot study findings to create a technology that helps identify the ODL Rx for individual patients and satisfies the goals of both patients and providers to help manage this complex disease.

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

Project HealthDesign and Patient-generated Data [Video]

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Throughout Project HealthDesign’s history, our grantee teams have worked closely with patients in order to explore the potential of personal health records (PHRs) and personal health data. As our first nine teams worked on their projects, they listened closely to patients and began hearing patients describe their health in idiosyncratic ways. Their work led to the recognition of observations of daily living (ODLs) — information about an individual’s life that is both patient-defined and patient-generated.

Project HealthDesign's five most recent grantee teams have carried this vision forward by designing five different technical systems that allow patients to track their ODL data. In these projects, patient participants have tracked a variety of ODLs, from daily activity and stress levels to socializing and moods.

But ODLs are just one type of patient-generated data. Other types include traditional patient-reported information about signs and symptoms (e.g., blood pressure, blood glucose), sensor data, patient preference data, and patient-reported quality assessment data.

We’ve been excited to see interest in patient-generated data grow throughout the course of the program. This month, Patricia Flatley Brennan, Project HealthDesign national program director, testified before the HIT Policy Committee’s Meaningful Use and Quality Measures Workgroups and the HIT Standards Committee’s Consumer Engagement Power Team at their Patient-generated Data Hearing. (Listen to an audio recording of the hearing.)

“Patient-defined, patient-generated data can be incredibly important in helping to understand the care process of individuals,” said Dr. Brennan. Watch the video below to learn more about Project HealthDesign’s outlook on patient-generated data.

Patient Utilization of ODLs and Insights Related to ODLs in Chronology.MD

Kathleen Morrison, Chronology.MD Project Director, Healthy Communities Foundation

Our study population of 30 participants was essentially a convenience sample. Our University of California, San Francisco (UCSF) clinical team posted flyers in the clinical offices. They also approached patients whom they felt would be interested in and capable of using an app designed to identify personally relevant observations of daily living (ODLs) and graph ODL input over time. We conducted an online survey in April 2012 to gain insight on the patient-reported utilization of our two applications — the Chronology app for ODL collection and the Crohnograph app for data visualization.

Our patient population was evenly split male/female; 61% were between the ages of 25-34, 25% were between 35-44 years, and 14% were between 45-54 years. Because the clinical practice is part of UCSF, it came as no surprise that several of the patients were graduate students or those employed in fields related to the technology industry. This was an extra bonus for us, because not only were many of the patients already comfortable with digital technology, but also they were also able to offer us great input and advice regarding the design and architecture of the apps we developed.

When asked whether they used the system, 93% reported yes. Those who did not use the system were either very sick during the course of the study (i.e., too ill to enter data), or very healthy (i.e., nothing to report; wanted to take a holiday from their illness). Overall, the ODLs that the patients felt were the most personally relevant to track were (in order of most frequently cited): abdominal pain, weight, energy, journal, stress, daily activity, medications, sleep, lab tests, and trigger foods.  Our sample size is too small to make any statistically significant conclusions, but we did find some variation in the types of ODLs collected by age. Patients in the 25-34 years age group were more likely to report abdominal pain and weight as the two most relevant ODLs for them to share with their providers; patients in the 35-44 age group reported that the journal and abdominal pain were most relevant to share; and patients in the 45-54 age group unanimously reported stress and energy as the two most relevant ODLs to share with their providers. Perhaps more pertinent is that patients who had been diagnosed with Crohn’s for 10+ years reported abdominal pain, weight, energy, stress, daily activity, and sleep as the most relevant ODLs to share with their provider.

Several patient interviews revealed that patients found the connection between sleep, energy and stress to be extremely illuminating and helpful to monitor. In addition, many patients  reported that they had no idea that increased sleep and daily activity had such a big impact on both their energy levels (increase) and stress levels (decrease), but  also impacted their level of  abdominal pain (decrease). One of the biometric devices patients used in this study, the Fitbit Body Monitor, tracked both sleep and steps taken (daily activity), which facilitated the ease of tracking of both of these ODLs.

Prior to the study, about half of the patients ages 25-34 years and 35-44 years monitored their symptoms, while only 25% of the patients aged 45-54 did so. After the study, 100% of the patients ages 15-34 and 45-54 reported that they are more likely to monitor their symptoms on a regular basis. About 50% of the patients ages 35-44 years reported that they are more likely to monitor their symptoms on a regular basis after the study.

At the beginning of the study, the cohort was informed that we would be beta testing a new technology, which would have bugs and glitches. Although developing and testing a new system was challenging, the patients were positive, patient, and shared a great deal of insight with our team. This study set out to identify ODLs relevant to patients with Crohn’s disease and to discern whether the visual narrative of these ODLs would be helpful in promoting patient-provider communication and collaboration. Based on our evaluation, we have established that our patient participants felt that they need a technology like this to track their symptoms, identify connections, and be better informed and prepared when meeting with their providers.

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

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.

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