Clinton Health Access Initiative
Enabling support systems to align to patient needs for sustained adherence to treatment
TB Endemic in Inida
India has the highest Tuberculosis burden in the world with 27% of the global incidence. This highly contagious disease requires 6+ months of rigorous treatment regimen and prematurely stopping treatment often leads to drug resistant relapse. India is on a mission to eliminate TB by 2025 but insufficient awareness, stigma, delay in diagnosis, hurdles in access to healthcare and the under-reporting of positive cases have created an uphill battle.
Joint Effort for Elimination of TB
Our work with Clinton Health Access Initiative under the JEET program (Joint Effort for Elimination of TB) looked at understanding the patients' ecosystem to uncover barriers towards normalising TB diagnosis and encouraging treatment, focusing on patients from lower socio economic segments, who rarely find their needs at the center of healthcare service delivery.
Strategy and Approach
Sustenance is a higher priority for this segment of patients hence treatment related decisions are not static but continue to evolve over the long treatment duration, making it critical for the support system to evolve alongside. Our intensive study with patients and their immediate community uncovered these latent factors that dynamically influence their treatment adherence. We mapped this understanding over a deconstruction of JEET's systems and services to propose a patient-centric alignment of mandates. The findings were then validated at scale through a survey for a pan India rollout
We understood patient mindsets and motivations to identify socio-economic influences and instances where patients feel most vulnerable, including those that happen before diagnosis of TB and impact their adherence to the current treatment.
Patients react to TB diagnosis based on what would be impacted most in their lives, defining whether they will come back to the doctor to continue treatment, engage in doctor shopping or skip treatment altogether. This led us to define attitudinal patient profiles at that stage and ways to address their concern for increased uptake of treatment.
Patients' perspectives on TB are shaped by what they hear from immediate family and community, post diagnosis. This includes misinformation, further deepening the stigma against TB. It's therefore critical to provide clarity and confidence about their condition when diagnosed and equip them to counter instances of misinformation.
Earlier, the change of treatment phase was considered to be a point of probable dropoff with JEET deploying additional support around it to move patients out of their inertia. Our findings reflected otherwise. Patients considered the change as an accomplishment and stayed in treatment with the inertia actually setting in 3-4 weeks later.
We proposed a comprehensive patient engagement and communication strategy that included attitudinal profiling of patients at different stages of their treatment journey and recommended ways for the JEET treatment support staff to recognise and address these (preemptively or retroactively) to help patients navigate tough phases, minimizing probable drop offs. The vocabulary around the highly stigmatized disease was culturally aligned with vernacular analogies that acknowledge the tough treatment journeys and communication collaterals helped close the information loops at critical milestones in treatment. To enable JEET systems to pivot to this mode of service, we had recommendations around onboarding and continued training of JEET staff along with introducing qualitative parameters for performance assessment.
Our approach of behaviour-led patient profiling has helped streamline JEET’s communication and counseling efforts towards increased uptake of treatment for new patients and enhanced engagement with those already on treatment, impacting over 2Lac patients a year.