Sana.PCHR: Patient-Controlled Electronic Health Records for Refugees

Abstract

Background Noncommunicable diseases (NCDs) account for an increasing proportion of global morbidity and mortality and unsparingly affecting war-torn populations. Diabetes and hypertension, in particular, were implicated in 80% of deaths in pre-conflict Syria (ca. 2010) [Sethi], and are as persistent as ever throughout the ongoing Syrian civil war. Over the past several years, evidence has been accruing to suggest that mobile health (“mHealth”) interventions are efficacious in improving health outcomes all over the world. Sana, an interdisciplinary organization comprising many healthcare-sector stakeholders, has devised a patient-controlled health records (PCHR) app that will allow physicians to monitor and impact their patients’ long-term health outcomes. Objective We intend to implement this technology solution in close collaboration with front-line healthcare workers, patients, local governments, and humanitarian organizations, so as to better understand the on-the-ground populations we are seeking to serve. Methods The first phase of product development and testing is slated to occur within 21 months of the project’s commencement. During months 0-6, the Sana.PCHR application will be iterated and optimized using available guidelines and inputs from country-based healthcare providers. At the same time, data on existing NCD treatment will be collected at local healthcare facilities for comparison purposes. During months 7-8, frontline healthcare workers will be trained to use the app, which will be subsequently deployed in selected health care facilities. Finally, during months 9-21, use of the application will be monitored and supported by MIT Sana and JHU, and modifications will be made as needed. Related data will be collected for research purposes. Results We anticipate that the Sana.PCHR app will improve health outcomes along four key axes: (1) the overall quality of NCD care by promoting adherence guidelines, both during patient-doctor interactions and throughout the patient’s longitudinal treatment; (2) care coverage by supporting lesser-trained providers in lower-resource settings during care delivery; (3) continuity of care by maintaining patient-specific information that can smooth transitions between healthcare providers; and (4) data analytics so that in the long term, humanitarian organizations can apply machine learning to improve operations and outcomes. Conclusion Sana.PCHR is an innovative approach to addressing the emerging global refugee crisis while simultaneously curbing the escalating burden of NCDs. Successfully implementing this application will lead to more granular and effective monitoring of refugees’ health, especially in resource-constrained settings.