By Amy Z. Chen
Georgia Institute of Technology
Before starting this fall as a PhD student, I worked with a social enterprise based in Bangalore, India that develops technology to support tuberculosis treatment and patient management—tuberculosis being the top infectious disease killer in the world (having killed more people in 2018 than COVID-19 has, as yet, in 2020), disproportionately affecting poor and marginalized communities. The start-up was spun out from a project at a technology research institution, with a strong group of HCI and information communication technology for development (ICTD) researchers. The design of the original innovation involved heavy qualitative work with patients and providers in a local public hospital, with feedback from public health experts outside the realm of technology.
Sounds great on paper, right?
While I believe the organization continues to do important work, as it and its work grew—in the scale of patients and providers served, in the size of its workforce, in the number of partners and stakeholders, in the list of responsibilities—priorities shifted in a way such that today, no employee has regular, if any, interaction with providers or patients to directly engage them or their feedback in the process of creation. The former patient- and provider-outreach team has largely pivoted to being an account management and business development team, conversing largely with global health donors and governments or NGOs which contract for the organization’s services. In other words, it operates like a normal tech company.
How did this happen?
Let me first eliminate some possibilities. The company’s leadership and employees, before and today, are truly dedicated to creating positive social change. They understand the value of connecting with communities, and some of them are specifically familiar with the methods of participatory design. These values are not merely voiced by a small segment of the company in the face of a distant, profit-hungry management; while it has grown quickly, the entire team is still well under 100 employees. Before I left, there was discussion of including measures based on patient and provider engagement and feedback in a new set of internal accountability and success metrics, though so far, this has not been implemented.
In the rush to scale for the maximum spread of impact—the ultimate goal of many in international development, global health, and tech for good—there has simply not been time to indulge in these “nice-to-haves,” of reflecting critically on the design and impact of products. That, they say, is the work of academics, but not of people who have a job to do in the real world. Scaling, at least in the world of mainstream global health, requires courting deep-pocketed donor organizations and high- level government bureaucrats, all of whom may be dedicated to public service, but who sit very far from the villages and city neighborhoods fighting the tuberculosis epidemic. On top of that, with public health systems globally being chronically underfunded, these stakeholders have endless laundry lists of asks for their IT infrastructures. And so, provider asks, let alone patient asks, end up at the distant bottom of those lists.
Has this shift in priorities, and absence of grassroots voices, resulted in work which is not as beneficial to (or even harmful to) patients’ health than it could be otherwise? Unfortunately, it’s hard if not impossible to answer this question. The counterfactual ideal tech-for-underserved- communities company, as far as I know, has not existed yet, or at least not at “scale,” so we don’t really know what this counterfactual work would look like. The fact of the matter is, the vast majority of tuberculosis patients and direct care providers (in this case) are quite unfamiliar with software development and many of degrees of separation away from people in tech. The few patients and providers who are, are usually from very different backgrounds than the rest. This chasm is not unique to the technology sector, but perhaps uniquely in the focus of the public eye of late.
In light of these questions, I find myself looking to political activism and social movements which prioritize as a value in and of itself staying connected to grassroots actors, not just bridging the gap between the experts and the impacted, but blurring those distinctions altogether. As such, I look forward to discussing the possibilities for, and the limitations of, collective organizing and activism in the tech sector, not just for big tech, but also for well-intentioned smaller tech-for-good efforts.