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.