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.