New research uncovers the changes necessary to build sustainable digital health ecosystems the world over.
Illustrations by Aron Vellekoop León
Manjesh, a healthcare worker from Bengaluru, says that a lo-fi digital app called 99DOTS gave his tuberculosis (TB) patients their lives back.
The drivers, railway porters, and software engineers who he cares for work from sunup until sundown, and their previous treatment program required daily visits to the clinic for medication monitoring, posing an impossible challenge. “They would tell us, ‘Even coming once a week is difficult,’” says Manjesh. But for TB patients, missed doses can mean the difference between a cure and debilitating disease, community spread, or death.
Then came 99DOTS, which allowed patients to log their medication compliance remotely. Suddenly, they could wait a full month between visits to the clinic for their medication refills. Manjesh’s patients finally had a schedule they could keep.
Medication adherence for TB patients is often difficult, but the concept behind 99DOTS is simple. Patients slip each pill out of a paper sleeve, revealing a toll-free number that they can call to confirm they’ve taken their meds. (The number assigned to any one pill is chosen from a bank of numbers, so it’s unpredictable to the patient.) The information captured from this call is then entered into a dashboard that healthcare workers can access to flag patients who need extra help. 99DOTS’ straightforward, intuitive approach allowed the model to scale from Bengaluru to the rest of India, making it one of just a few nationwide digital health systems.
But 99DOTS and the open-source platform that powers it, the Everwell Hub, face limitations, too. The Everwell Hub aspires to offer integrated management of patients’ healthcare, including multiple conditions and treatments, but for now it only covers TB. For example, pilots of the 99DOTS platform for HIV medication management have not reached the same scale, despite the fact that patients and healthcare providers would benefit from combined reporting of the frequently comorbid conditions. One challenge faced by Everwell, the Microsoft spin-off that runs the Everwell Hub, is securing the funding necessary to integrate disparate disease-specific platforms.
The 99DOTS story encapsulates much of what does and does not work in the digital health ecosystems of low-resource countries, according to a recent investigation co-led by Digital Square—an initiative at PATH that brings together a consortium of more than 100 digital health partners—in collaboration with its partner Vital Wave Inc. The research was funded by a public-private partnership including the software analytics company Tableau, the Bill & Melinda Gates Foundation, the U.S. Agency for International Development, and Microsoft. Its findings include an analysis of two major structural challenges to the sustainability of digital health investments in low-resource settings.
The first structural challenge is a siloed, as opposed to systemic, approach to funding that is focused on a single disease or geography or limited to the start-up stage, without any consideration for longer-term operating costs. The second is a lack of partnerships with the in-country national governments that are often responsible for scaling and maintaining digital innovations for public health systems.
Together, siloed funding and lack of government partnership result in redundant investments, lack of integration between healthcare datasets, millions of wasted dollars, and unsustainable projects. Healthcare workers are forced to spend precious hours learning and using multiple digital systems instead of tending to patients. As a result, many of a country’s greatest healthcare needs go unmet, leading to unnecessary illness and death.
Digital Square’s findings suggest the need for a structural overhaul of digital health funding and incentives, which is in line with other calls from the digital health community. Holistic, government-led investments into digital health in low-resource settings could help overcome the challenges encountered by 99DOTS and other programs and ultimately keep people healthier. The findings also support the growing dialogue around decolonizing global health—that is, changing the power balances between governments, donors, and partners to increase local autonomy and ownership.
The coronavirus pandemic has made one thing clear: Lack of access to digital health is exacerbating existing inequities. The need for real-time information has become “real time,” as governments realize that to get ahead of a healthcare emergency, they need data not in a week or a month but now.