Why digital architecture matters to the HIV response

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By Richard Ngethe, MBA, Data.FI

As a data clerk in Kenya in 2005, my challenge was to work at rural hospitals digitizing client-level longitudinal data for HIV disease into the country’s newly introduced electronic medical records system. We defined success as the elimination of the backlog of data yet to be digitized so that we would achieve comprehensive, credible, and high-quality longitudinal data per client, per facility, for reporting.

Little did I know then that I was standing on the bedrock of a national digital health architecture. Little could I conceptualize that my work would not only aid reporting but would be essential for HIV services. And I certainly didn’t envision that my professional experience would teach me that delivering on services, not reporting, is the most important function of a digital health architecture.

I was witnessing an inflection point, but it took a few years for me to recognize that fact.

Fifteen years later, increasingly responsible positions have led me to this mantra: Digital architecture enables digital health initiatives to improve service delivery. The hierarchy is this: service delivery priorities must come first; digital architectures must support these; and digital systems must align to the architectures.

There probably is no better articulation of a strategic vision for digital architecture than that published by  USAID Vision for Action in Digital Health 2020-2024. When we talk of putting the architecture first, we should be aligning with the principles laid out in that important document. That is how we make digital health work for everyone.

What brought me to this conviction, and what do we need to adjust so that our digital practices conform to the proper hierarchy without each country having to learn painful lessons for itself?

My professional trajectory has taken me through various titles. I had an early job as a data clerk, then worked as a monitoring and evaluation (M&E) officer, a strategic information advisor, held some management roles in between, served as country director in Kenya, and now am the digital advisor for USAID’s Data for Implementation (Data.FI) project implemented by Palladium. Along the way, these roles included tasks such as reporting, analysis, alignment, interoperability, and strategy.

My work assignments and experiences mirror the evolution of digital architecture for the HIV response—from non-existent, to ad hoc, to formalized, and, finally, to strategic.

The demands and needs of HIV services delivered in communities and facilities and meant to end the epidemic can be daunting. A successful HIV response requires health system strengthening initiatives that yield efficiencies and quality at the point of service delivery, which sets up a high reporting burden for HIV response. Meeting that burden creates a need for high-quality, timely, interoperable data for facilities. As a data clerk, I often had to enter the same patient information into multiple disparate systems; for example, one system for client management for improved clinical service provision, another one for pharmacy prescriptions and commodity management, and yet another one for reporting to the Ministry of Health. All of these systems were important for their intended use – but were duplicative, resource-intensive, and time-consuming to maintain. This proliferation of disparate, duplicative systems is persistent, as reported in a 2018 survey from the KEMRI/Wellcome Trust Research Programme[1]. Furthermore, the need for quality data for improved service delivery is relatively dynamic, with emerging evidence frequently informing changes to programming—such as the implementation of differentiated care models—changes that impact and are facilitated by digital architecture and digital subsystem design.

The demands of service delivery and the burden of data collection to generate evidence for improving care have collectively transformed the underpinnings of HIV service delivery. Where success is most strong, these needs have given rise to digital architectures that facilitate three functions:

  • A consistent, comprehensive, digital, client-centered record;
  • An evidence base to inform clinical decision support and continuous quality improvements that result in improved patient outcomes and safety;
  • Responsive above-site monitoring for transparency and accountability.

Why is this architectural approach valuable to program outcomes, and how can national digital health architectures be leveraged to prioritize service delivery?

The client-centered focus that enables good clinical decisions based on evidence will result in better patient outcomes. Further, interoperable digital systems with a common patient-identification system helps with longitudinal tracking for improved care as clients move through disparate service delivery points. When I was a data clerk creating those records that can follow a client through the healthcare journey, imagine how much simpler my life would have been had we had interoperable, interlinked systems, aligned to a context-appropriate digital ecosystem architecture; and imagine how much better patient data could have been consolidated within the patient file for improved clinical management!

USAID’s digital health strategy asserts that “the term ‘digital health’ refers to the planning for, study, and use of digital systems and the data they generate to strengthen health institutions and outcomes through improved health information and delivery of care” (emphasis mine). The client and client outcomes are front and center in the concept of digitized systems.

What type of architecture supports improved client health outcomes? There is no one answer. Each country must set up what enables the client-centric digital system(s) required for the job. The digital architecture is a blueprint, to guide country-specific technology requirements that can prioritize what a country wants from its national digital health systems. National digital health architectures also streamline managing competing digital systems, strengthen national health institutions, and improve the provision of health care overall.

My journey veered from client data to digital architecture and the strategies behind it when I became a strategic information officer. My job was to align and interoperate data collected in disparate, siloed systems, including the EMR I had helped to put in place, but also other systems managed by different stakeholders, such as pharmacy commodity management systems.

Good digital architecture enables health facilities to better serve the client and to enable the government to easily see progress made or where change is needed. This avoids rework, duplication, and minimises cost; facilitates interoperability; and accelerates the achievement of all the benefits of strategic information including improved patient outcomes and safety.

I’ve witnessed and participated in the entire evolution of the digital architecture for HIV in Kenya. For example, we’ve gone from cumulating records by hand into a patient register and then keying that data into a national health information system software to today having a comprehensive national data warehouse. In this warehouse, client data from facilities across Kenya are pooled; interlinked with data from other systems such as lab information systems; deduplicated; analysed; and used for routine reporting, for case-based surveillance, for outcomes measurement, and for numerous other impactful use cases.

A public-health practitioner at a level of influence at Kenya’s National HIV/AIDS and STI Control Program (NASCOP) now has a powerful tool at her disposal to strengthen her supportive supervision of front-line workers, and improve her forecasting, resource allocation, and strategic planning. She can proactively initiate evidence-informed programs to improve service delivery provision. Digital architecture solves her leadership and management needs just as it does the data clerk’s; essentially, digital architecture makes digital health work for everyone.

Over the years, my counterparts across Africa—those unsung heroes: the data clerks, M&E officers, and strategic information officers working at facilities were bringing this about, albeit often not aware of the fact. When I look back at the evolution of the digital architecture in that context, over the years, the achievements are staggering.

Now, I’m able to look back at these achievements and make sure that, with any new digital project under my purview, I can pre-empt all of those relatively painful but instructive lessons learned around the development of digital solutions for the HIV response: Put the architecture first!

Richard Ngethe is the digital advisor to the USAID-funded Data for Implementation (Data.FI) project led by Palladium.

[1] Survey of Electronic Health Record (EHR) Systems in Kenyan Public Hospitals: A mixed-methods survey, JMIR Preprints, JMIR Preprints Muinga et al, 2018 https://preprints.jmir.org/preprint/12995

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