CLOSING
THE
HEALTH
EQUITY
New research uncovers the changes necessary to build sustainable digital health ecosystems the world over.
GAP
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.
At Odds and Out of Sync
The scarcity of holistic patient management platforms isn’t due to a lack of demand. Individuals interviewed by the project researchers, for example, said that they urgently feel the need for holistic, nationwide digital health systems rather than platforms that only collect information specific to a particular disease.
But implementation is another matter. Even India’s platform Nikshay, one of the most advanced and integrated electronic healthcare record systems in South Asia—which, like 99DOTS, is powered by the Everwell Hub—is only able to track a patient’s care cycle (from diagnosis and treatment to outcome) for TB. It can record other comorbidities for a particular patient but does not track the details of these other diagnoses or treatment plans.
“Every program is a separate world in its own, designed by its own complexities and requirements,” says Kanishka Katara, PATH’s deputy director of digital health, who’s based in Delhi and carried out much of Digital Square’s research in India. Any one patient may be registered in several public health programs—such as those for TB, HIV, or dengue—but there is no platform that can pull up the totality of these records in one place or provide a unified, 360-degree view of a patient profile.
Similarly, Mozambique’s most extensive electronic medical record program, which is linked to 650 hospitals, only contains HIV information, leaving health workers in the dark about a patient’s potential comorbidities, medical history, medication regimes, and overall health status. Digital tools save healthcare workers time by streamlining data capture and automating reporting, but without integration, workers must take time away from clinical care to maintain records across a patchwork of systems, delaying potentially lifesaving treatment for patients. Without a comprehensive digital view of their patients’ medical history, health workers also must rely on paper-based forms and questioning at the clinic, increasing the potential for conflicting diagnoses and medical advice.
Silos define digital health funding in other ways, too. Donors may narrow their focus to a single geographic region, country, or even a particular state within a country. Two distinct groups may work on similar problems in different regions of Kenya, for example, but if they don’t partner with the in-country government, it can be operationally challenging to coordinate their efforts. “What you have is an environment of duplicate investments and resources across these countries,” says Linnea Stanhope, the lead researcher from Vital Wave on the Digital Square investigation.
Even when funders take a more comprehensive view of disease areas or geography, they may limit their investment to the exciting start-up stage of a project. But without coordination with national governments, which are typically more interested in long-term sustainability, most of these start-up innovations do not win long-term financing guarantees and fail to make it past the pilot stage. In Uganda, for example, the proliferation of well-intentioned digital health pilots culminated in a request from the Ministry of Health in 2012 for better coordination and harmonization, says Dr. Greg Moore, who leads Microsoft’s health and life sciences efforts. “We continue to see this ‘pilot-itis,’” says Moore. “Technology innovation is important, but the work does not end there. It’s also vitally important for there to be business and partnership models that give everyone in the system strong incentives and reasons to invest and remain committed beyond the pilot.”
The Digital Square researchers found that the reasons for the siloed funding and lack of donor-government partnerships are structural. Donors tend to organize around health issues in which they have expertise or for which they have a personal passion, then design programs with reporting mechanisms that track improvements in that specific health issue, as opposed to benefits to healthcare workers or broad measures of health. Alternatively, donors focus resources on innovations that will make a big splash during the start-up phase because this is often the best way to garner public recognition and global prestige, and because short-term projects carry less risk of failure.
These tendencies conflict with the task of achieving platform interoperability, further limiting the platforms’ reach and functionality. Donors and implementing partners (such as NGOs, nonprofits, and software developers) also hobble the sustainability of their projects by dedicating too few resources to listening to and engaging with national governments to gain a better understanding of the health system and cultural and economic contexts. As a result, they underestimate the complexity and cost of adapting high-tech digital solutions to meet local requirements, which leads to insufficient project life-cycle funding, extended project timelines, and budget overruns, as well as closets full of unused technology, and decreased motivation for and trust in digital solutions.
Whether it’s an early-stage innovation that needs investment to be scalable, a suite of 10 siloed systems that each track a different disease and can’t talk to one another, or a high-tech solution hampered by spotty connectivity in the target community, these imperfect projects ultimately require long-term fixes—a job that often falls into the laps of national governments.
National digital health strategies are one way to create more autonomy for governments while incentivizing cooperation between donors. These strategies can be used to design investments in a way that upholds government priorities. Some governments already use such digital strategies to ensure that projects funded by NGOs and donors align with local health priorities, whether that project is a unified platform to address multiple health concerns (e.g., maternal health, infectious diseases), an affordable electronic health record with nationwide reach and user-informed design, or otherwise.
For example, Tanzania put a national eHealth strategy in place in 2013, which has led to improved quality of healthcare delivery and flow of information. In 2019, it also updated the strategy with an execution plan that included an investment roadmap, the rollout of a national health enterprise platform, and a commitment to breaking down healthcare silos so that its digital systems are integrated. And in 2020, the Indian government announced a National Digital Health Blueprint in a direct effort to break down silos. It’s a centralized mission that aims to develop core healthcare components and connect those systems to work together.
Local autonomy is critical in ensuring that these programs are sustainable and that communities get the healthcare they deserve. Today, when a funder gives money to a nonprofit or NGO to do work in a country, the local government is often beholden to the funder.
“If I’m a funder and you’re a nonprofit, and I say, ‘I’m going to give you a couple million to build a malaria platform in a country,’ I’m going to have a ton of influence over how that happens. What tools do you use? When will it happen? My voice as a funder is going to be louder than the voice of government,” says Neal Myrick, the global head of the Tableau Foundation. Decision-making around the use of donor funds should lie with national governments, and long-term, the money should even go directly to the government instead, he says. “And that’s part of the equation that’s incredibly broken right now.”
Even donors have recognized the need for better coordination, particularly with national governments. One group of donors announced a set of 10 principles of donor alignment in digital health at the World Health Forum in 2018, which included prioritizing national plans. The Global Fund to Fight AIDS, Tuberculosis, and Malaria is one major donor that has put significant dollars behind the principle of supporting national plans: Over $14 billion over the next three years is earmarked for investments that are coordinated by national in-country committees and have national strategic plans behind them.
Stronger partnerships between donors and national governments depend in part on donors responding to countries’ requests for learning opportunities for both government staff and local digital experts. With this in mind, Digital Square is supporting the University of Global Health Equity–led consortium, the World Health Organization, and a number of other partners in the recently launched Digital Health Applied Leadership Program, which aims to prepare national governments to successfully lead and execute digital health transformation initiatives.
To break down the funding silos and eliminate duplicate investments, a more coordinated donor approach is needed as well. To this end, Digital Square coordinates investments in a subset of digital health innovations that are high quality, affordable, scalable, and appropriately designed for low-resource contexts. Reorganizing teams within donor organizations, so that different issue-specific groups can work together to tackle common problems, could also help; however, current processes are so deeply embedded that the model is difficult to change, says Myrick.
Bill Thies, co-inventor of 99DOTS, says the scalability of a solution is often directly tied to its simplicity. “I think often there’s a temptation to invest in things that are very complex because those are the things that look fancy and new and sophisticated,” says Thies. But whether a technology gets widely adopted and how easily it integrates with other technologies often depends heavily on its simplicity.
Thies learned this the hard way. When he moved to India in 2008, he had just won a student design competition at MIT for a high-tech digital pill box that was meant to enhance medication adherence. When it hit the field, it was stopped in its tracks, he says, because it was totally out of touch with the local regions’ access to resources.
“Often we assume technology is the solution to the problem we’re trying to solve,” says Thies. But, in fact, the solution is ultimately about making the right human connections. Better partnerships in digital health—between donors and governments and among donors themselves—could be the missing link that will save lives.
This article was paid for by Digital Square, which is made possible by the generous support of the American people through the United States Agency for International Development (USAID). The contents are the responsibility of PATH and do not necessarily reflect the views of USAID, the United States Government, the Bill & Melinda Gates Foundation, Microsoft, or the Tableau Foundation. The research included in this article was funded by USAID, the Bill & Melinda Gates Foundation, Microsoft, and the Tableau Foundation.
This article was developed prior to the latest increase in COVID-19 cases in India. The ongoing crisis is a stark reminder of the importance of health systems, and the authors hope the lessons included here can support the continued strengthening of these critical systems in India and beyond.
