Accepted for/Published in: JMIR Formative Research
Date Submitted: May 2, 2023
Date Accepted: Oct 8, 2023
The Community-based ART REtention and Suppression (CARES) app for high-quality, integrated, antiretroviral therapy in Lilongwe, Malawi: Design process for a mobile electronic medical record system
ABSTRACT
Background:
Differentiated service delivery (DSD) increases antiretroviral therapy (ART) access in sub-Saharan Africa (SSA) by moving patients out of congested ART clinics to communities for care. Patient outcomes in DSD and traditional clinic-based care appear similar with lower patient costs. However, DSD settings challenge provider adherence to complex, chronic care treatment guidelines and have burdensome systems for patient monitoring and evaluation (M&E), reducing data for decision making. Electronic medical record systems (EMRs) ensure effective patient M&E in compliance with complex guidelines, improving patient outcomes and reducing M&E workload. Traditional EMRs cannot operate in most DSD settings with unreliable power and poor connectivity.
Objective:
Our objective in this paper is to detail the human centered design (HCD) process of developing a mobile EMRs for community-based DSD services in Lilongwe, Malawi.
Methods:
Lighthouse Trust (LT) operates two Ministry of Health (MoH) clinics in Lilongwe, Malawi, with combined >35,000 ART patients. LT’s real-time, point-of-care (POC) EMRs collects complex patient M&E data and provides decision-making support, ensuring adherence to integrated HIV/TB guidelines that optimize patient and program outcomes. LT’s EMRs scaled to all large MoH ART clinics. LT also implements a nurse-led community-based ART program (NCAP), a DSD model to provide ART and rapid assessment to 2400 stable LT patients in the community. Lighthouse, alongside collaborators from University of Washington’s International Training and Education Center for Health (I-TECH) and technology partner, Medic, used the open-source Community Health Toolkit and HCD to develop an open-source, offline-first, mobile EMRs-like App, “Community-based ART REtention and Suppression” (CARES), to bring EMRs provider benefits to NCAP’s DSD patients. CARES prototype aligns with Malawi MoH integrated care guidelines and M&E requirements.
Results:
CARES design took approximately 12 months from inception to prototype, using an iterative process of highly participatory feedback sessions with provider, data manager, and M&E team inputs, optimizing CARES for the NCAP and LT settings. The CARES mobile EMRs supports NCAP providers with embedded prompts and alerts to ensure adherence to integrated MoH ART guidelines, improving the quality of patient care. CARES facilitates improved data quality and flow for NCAP M&E, reducing data gaps and improving patient monitoring between community and clinic settings. The prototype brings to fruition a mobile, POC EMRs-like app that benefits NCAP patients, providers and program teams with integrated patient care and complete M&E data for decision making.
Conclusions:
Leveraging the CHT and HCD processes facilitated the design of locally-specified and optimized mobile app to bring EMRs-like benefits to DSD settings. Moving from CARES prototype to routine NCAP implementation should result in improved patient care and strengthened M&E. Our transparent and descriptive process shares the progress and pitfalls of the CARES design and development, helping others in this digital innovation area to learn from our experiences. Future rigorous evaluation of the App implementation in routine NCAP settings will provide data to strengthen integrated DSD service delivery and provide M&E evidence on DSD patient and program outcomes.
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