Overcoming TB’s Trust Deficit
Author: Chintan Maru
TB experts and Covid-19 experts can attest to the same truth: that infectious diseases thrive on distrust. This week we celebrate World Tuberculosis Day and, as we recommit ourselves to the fight against TB, we focus on how to build trust between TB providers and patients. It starts with listening. Here is our perspective based on our field experience in India.
What Covid teaches us
When leaders didn’t trust the public with the truth, they undercounted Covid-related deaths and didn’t acknowledge shortages of PPE or hospital beds. In places where the public distrusted leaders, they didn’t wear masks, wouldn’t distance themselves from each other, or declined vaccination. Distrust breeds distrust. And it is in these contexts where Covid has thrived. Is the same true of TB?
For each patient, fighting TB is a long battle. Patients must stick to treatment over a period of 6 months to 2 years, overcoming side effects and stigma, often in the context of poverty and malnutrition. In many countries with a high burden of TB, less than half of patients successfully complete treatment. There’s emerging evidence that trust is a critical factor in patient engagement with TB care and a driver of outcomes. How do we begin to build trust between patients and providers?
Listening as an antidote
Building trust starts with understanding what is important to others. Healthcare providers are taught to rely on evidence-based protocols that steer patient conversations down decision-trees. We do this with good intentions — these protocols increase efficiency and standardize care. But sometimes, a patient will describe a problem that doesn’t fit into that logical framework — an unusual side effect to a drug or job loss due to illness. Providers will brush over those details and miss an opportunity to understand what really matters to the person they’re caring for. To build trust, we need to listen.
That’s easier said than done. Frontline providers already feel overwhelmed and time-crunched. Is there a way to build better listening into the workflow of TB care? We’ve started to explore this in India alongside World Health Partners and USAID’s India Mission.
Outcomes that matter
Health systems invest heavily in metrics, and nearly all of those metrics are oriented around what the providers care about: factors like case detection and treatment completion, for example. We rarely track metrics from the patients’ perspective. The dearth of patient-reported metrics represents a missed opportunity for listening and building trust. Over the last three months, we have consulted TB patients and providers in India to address this gap. We asked one simple question: what are the outcomes that matter most to TB patients? We are using that insight to develop patient-reported metrics focused on those outcomes.
The people we consulted said that, beyond clinical outcomes, patients care about the quality of life and experience of care. They also believed that these three elements were mutually reinforcing — better quality of life and experience of care improve patient engagement with care, leading to better clinical outcomes.
We should acknowledge that we have many details to iron out. How do we ask these questions in a way that builds a stronger relationship between providers and patients? How do we streamline the questions so that they don’t strain frontline providers? How do we make patients comfortable in answering these questions openly and honestly? We are working closely with our partners to design an approach that is both practical and insightful.
We embark on this learning journey with a clear goal in mind: building more mutual trust between TB patients and providers. We know listening builds trust, and we’re hoping these new data tools allow us to listen at scale.
