Last year, designers from the U.S. and Kenya teamed up with a leading consortium of public health researchers to improve the effectiveness of contact tracing for tuberculosis in Uganda. In recent months, contact tracing has become a household term, but in Uganda and many other countries in the world, it’s long been an essential tool in combating tuberculosis—an ancient and persistent disease that remains the leading infectious killer in the world.
Contact tracing is the process of following up with the relatives and close contacts of a person who tests positive for an infectious disease. It’s a simple concept with deceptively difficult execution—akin to playing telephone on the elementary school lawn. While imperfect, it’s the best tool we’ve got for ensuring everyone with disease has a clear diagnosis, access to treatment, and is cured.
In Uganda, the process usually unfolds like this: if you test positive for TB, immediately after hearing your results, you are asked to share the names of everyone you live with, then coordinate a time for a community health worker to visit your house to test those people for TB. Then you sit together as the health worker explains medical information, collects sputum samples from everyone, and leaves—promising results to come via phone in days or weeks. This protocol has saved lives and helped stem the tide of the disease in Uganda. But, the experience can be uncomfortable, inconvenient, stigmatizing and scary—reducing its potential effectiveness.
Over the past several months, we set out to redesign the contact tracing process and experience—interviewing patients, health workers, and family members about barriers that exist today and testing potential interventions through prototyping. This surfaced a few key insights about the human experience of contact tracing that illuminate critical considerations for making it more effective in the future.
What’s worse than getting a terrible diagnosis? Knowing you may have unknowingly spread it to someone you love. Contact tracing involves the scariest of scaries, and asks much of patients in a moment of extreme vulnerability. In Uganda, telling your family they might have TB can feel like condemning them to death, even when a cure is free and available. It’s a moment wrought with deep fear and profound stigma, and is not to be taken lightly. As we design for human-centered contact tracing, how might we enable newly diagnosed patients to reach out to their loved ones, on their own terms? More empathetic service design could distribute this discomfort—allowing patients the space to process their diagnosis, identify their contacts, and disclose in a less overwhelming cadence.
Contact tracing usually starts with a list of names reported to a registry. While it’s important to get all the names down, it’s easy to miss the subtleties of how people live, whom they meet, and how they interact - all critical to understanding the full risk picture. In Uganda we found that many workers in the city went home to their families in the more rural areas on the weekend. Thus they had two homes, and two communities to potentially infect. Asking where people live wasn’t the right question; we needed to learn more about the rhythm of their lives. As we identify contacts, how might we honor the complexity of human relationships and follow-up thoughtfully as we share potentially distressing news? Contact tracing tools and processes need to make space for all of the relationships in our lives—even those we might forget or might rather omit.
Tracing everyone who may have been infected is a herculean task, one that requires diligent coordination that falls almost exclusively on overworked community health workers. In Uganda, we introduced exploratory ways to share the tasks of follow-up, enlisting moto drivers to transport samples, and volunteers to make follow up calls. While still in the testing phases, these shifts hold the potential to distribute the burden away from an already strapped health system, creating more capacity for trained health workers to focus on caregiving. As we follow-up with every case, how might we re-engineer the system to design for effective and expedient task sharing? Doing this well has the power to exponentially scale contact tracing when and where we need it most.
These insights formed the basis of a program that will be trialed over the coming years in Uganda. We’re hopeful this and other pilots like it—combined with innovative digital technology and coordinated tracking and follow-up—can inform a next generation of contact tracing efforts that is more efficient and effective in combating TB and a host of other infectious diseases.
Epidemiology is typically oriented around population-level data and national protocols, but as we saw in Uganda, the efficacy of our interventions often hinges on individual human experience. As designers and public health researchers, it’s critical that we keep people—and their complex needs, relationships and priorities—at the center of our efforts.