TB Pe Charcha (Talking TB) : Providing Person - Centered TB Support, Information, & Guidance

Tuberculosis (TB) though curable is a global pandemic, and claimed approximately 1.3 million lives in 2022 alone. India is considered the global TB epicenter with an estimated 480,000 Indians dying of TB annually,  and about 1,400 deaths daily. In India and elsewhere,  TB care is fraught with challenges especially a lack of patient support and  disease literacy among those affected. Also, TB diagnosis is challenging, and treatment is prolonged, toxic, and fraught with severe side effects, compounded by deep social stigma and significant mental health repercussions. Through our solution, we wish to address the lack of comprehensive, empathetic and accessible patient support and disease literacy among TB affected individuals and their families in India and South Asia.

Why is this important? It is critical as TB disproportionately affects the poor, vulnerable, urban migrants, women, and those residing in informal settlements in burgeoning urban centers, where overcrowding, migration, and poor nutrition accelerate  TB transmission but access to support and appropriate care is limited.

TB care paradigms, both in high burden countries like India and globally, lack effective solutions to provide critical patient support , information,  and guidance, to TB-affected individuals and families. Thus, current TB care in many countries is characterized by no patient support, lack of information, stigmatizing, and dehumanizing practices, leading to delayed diagnosis, treatment complexities, stigma, and exacerbated mental health (MH) challenges. These gaps  stem from an overemphasis on medicalized approaches, information asymmetry, and a lack of  person-centered supportive care. This lack of support, information, and guidance makes care unresponsive, diminishes human agency, fosters social and self-stigma, impacts treatment adherence, and overall health outcomes. This often makes TB unmanageable, especially for marginalized and vulnerable populations.

Globally, TB remains the foremost global killer. India bears the highest TB burden globally, and  its urbanizing cities have become  epicenters of this epidemic. Research tells us TB is a biosocial disease extensively affecting migrants, the poor, and minorities. TB care in India lacks patient support, guidance, open communication, side effect management, and mental health assistance. Contributing factors to this problem include:

• Uninformed, unsupportive care: Affected Individuals have inadequate information on TB disease, its diagnosis and treatment, compounded by the health workforce's dismissive attitude towards patient concerns, along with stigma, side effects, and MH issues.

• Access barriers: Socio-economic disparities, geographical hurdles, systemic gender biases within communities and health systems, impede timely access to TB diagnosis, treatment, and support services, especially for marginalized and underserved populations.

• Limited community involvement: The healthcare system often disregards patient concerns, resulting in gaps in disease understanding, perpetuating self-stigma and information asymmetry.

• Insufficient health provider Capacity: TB care primarily focuses on diagnosis and treatment adherence, neglecting patient needs. Healthcare providers lack adequate training in providing support and person-centered care

• Misinformation & Stigma: Religious and social myths and misinformation regarding TB exacerbates stigma and mental health challenges. The lack of accurate information, and disease literacy, coupled with social isolation impacts TB-affected individuals and their families.

Our solution is an integrated multilingual patient support platform, which includes a) WhatsApp chatbot and b) a YouTube channel to deliver multilingual information, guidance and psychosocial support for TB-affected individuals. Informed by survivor-led definitions of quality care, the community action model (Freire, 1974), and the behavior change wheel (Michie et al., 2014), our program aims to engage, inform and empower TB affected to enhance their TB care comprehensively.

As a TB-affected individual, our WhatsApp chatbot and online resources will provide reliable disease information, diagnosis, treatment guidance, and strategies for addressing stigma and MH challenges. It will address user queries in real-time allowing them continuous information  and support. Also, users will also access survivor stories, films about recovery from TB,  guided learning for self-care, stigma coping strategies, treatment management, to make management of TB disease easier. All of this will make care more TB care more person-centered, improve motivation, reduce stigma and help recognize and manage emerging MH challenges. For vulnerable groups such as urban migrants, women who lack control on their care and LGBTQIA++ individuals who fear interacting with the health system, this becomes an empathetic companion providing support at all times. Every time you have a query or a side effect, you will be able to receive information, guidance and support on it, with textual and  audio visual resources. 

This program will be developed using participatory methods derived from the principles of the community action model and design thinking. We will conduct community needs and perspectives assessment on TB support. This collaborative approach ensures people-centered design and content addressing specific challenges identified by the community. The content development will involve experts, survivors, and health providers, ensuring accuracy, relevance, and accessibility.

Guided by the behavior change wheel, our approach facilitates the design of evidence-based interventions to support behavior change. Our work aligns with NICE guidance (National Institute for Health and Care Excellence, 2009), emphasizing addressing patient perceptions alongside practical issues. Research underscores the critical role of community engagement, information, and support in enhancing the patient experience (Mehra, 2021).

Mobile technology, particularly WhatsApp, plays a pivotal role in providing accessible, confidential support. Utilizing an easily accessible online platform ensures scalability, while multilingual survivor-led content enhances audience connection. By empowering communities and strengthening healthcare systems, our program aims to eliminate TB as a public health threat.

By combining community-led design, evidence-based interventions, and technology-driven solutions, our program represents a comprehensive approach to improving TB care and ultimately working towards the eradication of TB as a global health threat.

Our solution serves two primary groups: TB-affected individuals, and their families with access to the internet and their own mobile phones. We are targeting India for the launch of our program but it has the potential to serve TB affected individuals across South Asia, especially in high burden countries.  

India had 2.8 million TB cases in 2022, with a case fatality ratio of 12 per cent. TB in this region primarily affects poor and vulnerable groups especially those without formal employment, limited access to health services often living in crowded urban centers and or extremely poor regions. These populations are often beset with overcrowding, poverty and air pollution which are amongst the most common determinants of TB. TB affected populations present a terrifying picture of death, devastation, poverty, and suffering.

This intervention for support is urgently needed from the patient and community perspective. This is because both in the public but also the private sector - where more than 60% of Indians seek treatment -here currently exist no support or information mechanisms for TB affected individuals and their families. Inaccurate diagnosis, treatment, misinformation, stigma is common and can cause economic, physical and mental distress.

Using this disease data and vast mobile and internet penetration rates (April-June 2023, the total internet connections in India are 895.83 million, TRAI), we estimate that there are between 50-60 % TB affected individuals, who will have sufficient mobile access to engage with our solution in India alone. Our program will particularly benefit urban migrants that are usually poor  in cities such as Mumbai, Delhi and Pune that have become hubs of drug sensitive (DS) and drug resistant (DR) TB. 

Their needs are currently underserved because TB care is neither person-centered,  nor is it responsive to needs of patient support. With a focus only on diagnosis and treatment, care is not geared toward addressing the informational, social, systemic, economic and mental health challenges that TB affected individuals and their families face. Thus any form of patient support is extremely difficult to access for those affected but especially difficult for low-income, low-literacy groups, women, sexual and gender minorities who are TB affected and face stigma, discrimination and even abuse from communities and the health system. They remain passive recipients without access to accessible information, support, guidance and dignified, non-stigmatizing care.

Our solution will address their needs by providing them with disease  information, managing treatment, accessing support narratives and guidance on how to address issues of side effects, nutritional advice, and also provide support and strategies for stigma mitigation. This will be done through a WhatsApp chatbot in real time, as well as our YouTube channel. 

We expect that by engaging with our program and its service, patient users will be able to a)increase disease literacy and understanding, b) demonstrate capacity to manage the severity of symptoms of side effects, c) recognize, manage and seek help for associated MH problems such as depression, anxiety and stress, and have d) reduced self-stigma.

Our team is uniquely positioned to design and deliver this solution to the target population. Pi has been a leader in community engagement and designing community-led care in TB, COVID-19, and HIV. Our team lead, Chapal Mehra, founded India's leading TB Community advocacy patient group, Survivors Against TB (SATB), pioneering the community-led paradigm of care in TB.

Pi created India's first expert, advocate, survivor, and community-led advocacy and patient support online program called TB pe Charcha. Our transformative work in community engagement has established a participatory design paradigm in policy and programs in South Asia. With close to two decades of experience working with TB and HIV communities, our team has a strong focus on policy, program design, and patient support. We advocate that TB is a biosocial disease that requires people-centered policies, programs, and solutions. Our work emphasizes that clinical expertise, along with lived experiences of diseases, should guide disease communication, program, and care design. 

The initiative integrates two key aspects in its programming: expertise by lived experience and expertise by clinical expertise. Building on our earlier work, where we launched India's first patient education and support program, TB pe Charcha, which eventually reached close to 4 million people on YouTube alone. Additionally, we have amongst the largest cohort of national and international TB advocates and survivors and collaborate with leading TB clinicians and experts in India and globally. Our work is founded on the principles of community action as a route to improved quality of care.

Our content design team, led by Vashita Madan, has extensive expertise in health communication design and working with communities. With over seven years of experience in TB issues, our team excels in public health awareness, communication, advocacy, and patient support program design for vulnerable groups and diverse audiences. We are currently working on multiple sustained, long-term phased communication and sensitization campaigns.

M Raza, who leads our technology efforts, brings a background in data science, technology for innovation, and the development of public-facing technology solutions. 

Moreover, Pi is uniquely positioned to collaborate with other key stakeholders such as national and state governments and the private sector. We have developed multilingual digital programs focusing on themes like women and TB, mental health and TB, stigma, treatment, and diagnosis, with a strong emphasis on vulnerable populations, especially women and trans communities.

Our diverse collaborators and key stakeholders represent a cross-section of experiences and skills in creating public narratives, with a strong focus on public health awareness.

We've selected the "Growth" stage for our solution.

Currently, our program टीबी पे चर्चा (Talking TB) is a solution available in multiple communities, offering limited patient support and comprehensive education on TB-related issues. This has also been used by partners on the ground, the government and the private sector.  We have developed and tested a range of resources, including multilingual patient education films, support materials, and interactive workshops, all available in five languages (English, Hindi, Marathi, Gujarati, and Malayalam).

Since its inception, our initiative has reached a significant number of beneficiaries (close to 4 million) from TB affected communities across various regions. This however represents a consolidated number and may have users visiting the program multiple times. Moreover, we do not have figures from the government  or the private sector on their usage under their programs. Through these efforts, we have provided essential information, guidance  and support to TB patients and their families, empowering them to effectively manage TB and overcome associated challenges.

Additionally, our unique survivor-led approach has resonated with our target audience, fostering trust and credibility within the communities we serve. We have received positive feedback and testimonials from participants, indicating the impact and effectiveness of our program in addressing their needs and concerns related to TB.

As we continue to grow, we aim to expand our reach and impact by scaling our program in different languages (adapting and expanding to 10) and formats to reach more communities and individuals in need by covering a larger set of issues. By leveraging our existing experience, infrastructure, partnerships, and resources, we are poised for further growth and are committed to making a meaningful difference in the fight against TB.

Our focus on scalability, sustainability, and impact measurement ensures that we can effectively drive positive change in TB-affected communities.

We are relatively new in expanding the program and it's still in its early stages of development and expansion to the next phase. While we have extensive experience in working with communities and stakeholders  and capacity to deliver, we need support, strategic advice, guidance on technology and funding for expanding the program and making it more broad based, inclusive and targeted. We also need support to strategize and establish the necessary infrastructure to  fully realize this solution's potential in the South Asia region and perhaps consider new geographies as well. Here the MIT Solve team and the faculty at MIT would be particularly helpful. This is especially important as in high TB-burden, low and income economies the focus on care paradigms which focus on patient support are limited. 

We are already establishing collaborations with the public sector and also private sector stakeholders. However, working with governments and the private sector also needs considerable  strategic thinking and planning and we would appreciate inputs on this. This support will allow us to expand the reach of this solution with partners in other countries as well with similar disease burden and or linguistic and cultural similarities. They can take this solution to the affected communities and amplify its reach while also providing guidance on the best practices with patients.

We also need to support the technical solution to ideate with MIT faculty in both technology and also behavior change and create the best solution possible for affected communities that remain at risk of lack of support, information and self-care. 

Our goal is to eventually expand this solution to high burden countries elsewhere and hence we are also keen on learning from organizations that have successfully expanded across multiple countries, particularly in terms of managing diverse teams operating in various linguistic contexts.

We also recognize the importance of establishing a robust board of advisors and partners and a proficient fundraising team to propel our initiatives forward. Assistance in this endeavor would greatly contribute to our ability to develop and finance our strategic plans effectively.

Finally, attaining recognition as a Solver would significantly bolster our credibility and facilitate connections with potential partners on a global scale. We believe this affiliation would be instrumental in advancing our mission.

TB care has made significant strides over the past decade with new drugs and technologies. Yet its single biggest gap remains the lack of person-centered patient support services. Even today millions of TB  affected individuals still grapple with a lack of support, information, and guidance, making the treatment journey and its associated challenges insurmountable. Our solution seeks to innovatively invert the care paradigm by placing TB-affected individuals at the center, providing them information and support, motivation and guidance thereby building their capacity to make them capable  to address  and manage their disease  and its associated care challenges effectively. By creating an easily accessible, multilingual,  patient support platform that provides those affected with support, guidance and information in local languages through pervasive technological platforms, we aim to transform their ability to manage treatment, and side effects, MH challenges and seek reliable care. This person-centered approach fosters a sense of ownership over one's health, enabling individuals to take proactive steps about their health and seek assistance when needed.

Millions of TB-affected individuals face barriers such as social stigma, mental health challenges, and difficulties managing treatment side effects. Our solution directly  addresses these issues, with the aim to transform the patient experience  through support and information s in diverse, multilingual countries like India and elsewhere. Our innovative approach in health information delivery, patient support, and adherence through digital channels has the ability to transform the TB patient experience safely and confidentially .

Moreover, our solution’s strength lies in its easy scalability and universal applicability. It strengthens India and the global fight against TB by providing accessible yet scalable resources that are adaptable though currently  difficult to access. By doing so, we address systemic gaps and promote personalized, culturally relevant health information and support, with the aim to improve treatment adherence, reduce stigma, and mitigate MH challenges associated with TB.

Unlike traditional top-down approaches, our solution embraces a community- and person-centered design approach, actively involving TB-affected individuals in the design and delivery of support. This is a community led and represented initiative, where communities share stories, motivate and guide through audio visual and textual aids. By prioritizing community voices and preferences, we ensure that TB support and care paradigms are tailored to create a community connect and meet unique needs and cultural contexts, resulting in effective support that enhances patient  responsiveness  and treatment adherence.

Additionally, our solution addresses economic barriers to support and information  by democratizing access to high-quality support and information in the local language with visual aids regardless of economic status or literacy. Leveraging technology to overcome geographical barriers, we promote healthcare access for remote and underserved populations anywhere they may be and  build their capacity to manage their care.

Our solution is not just a simple and easy innovation but one that harnesses the power of universal technology access and combines it with the inputs and lived experiences of community engagement to transform the TB care experience for all irrespective economic, linguistic, geographical, or cultural barriers.

Our theory of change revolves around the notion that by providing comprehensive, community-designed, and multilingual psychosocial support to TB-affected individuals, we can catalyze positive shifts in mental health outcomes and treatment adherence.

Drawing upon principles from the community action model (Freire, 1974), and the behavior change wheel (Michie et al, 2014), our solution aims to address the root causes of poor TB care paradigms such as lack of patient support, misinformation and associated challenges of stigma, MH and limited community involvement.

 Our theory of change is premised on the following: 

1) Through engagement with our WhatsApp chatbot and utilization of online resources, TB-affected individuals gain access to reliable information, guidance, and support tailored to their specific needs and challenges.

2) Through our community-designed support program, which includes self-guided activities and interactive modules, TB affected individuals develop coping skills, reduce self-stigma and manage their mental health. 

3) The outcome of these two interventions will be that TB affected individuals will be informed,  and feel empowered to actively manage their TB care journey effectively.

Our  strategy emphasizes participatory methods and design thinking to ensure the program's relevance and effectiveness within diverse TB-affected communities.  Our TOC is premised on the participative model as collaboration with TB clinical experts, communication specialists, and healthcare providers further enhances the program's impact and scalability. Leveraging mobile technology and digital health platforms, we aim to facilitate accessible, real time patient support and guidance, ultimately redefining care approaches and driving positive outcomes in the fight against TB. 

Outputs consist of the development of a WhatsApp chatbot and online resources providing reliable information and support, complemented by the creation of a comprehensive program featuring self-guided activities. 

Immediate outcomes entail increased engagement with the chatbot and utilization of resources, leading to decreased self-stigma among TB-affected individuals. Over the long term, we anticipate improved mental health and treatment adherence, driven by enhanced self-efficacy and agency in managing TB care.

Impact Goals:

Our impact goals are to engage with over 10,000 TB-affected new individuals and families in India within the next year, providing them access to evidence-based TB support and information proven to reduce stigma and discrimination, improve awareness, promote empathy, and reduce depression, anxiety, and stress. 

We aim to measure improved health outcomes, satisfaction with support services, reductions in self-stigma, symptoms of anxiety and stress, and improvements in overall mental wellbeing among program participants for all active chatbot users and YouTube users who choose to participate in our surveys. Additionally, we aim to expand our reach to 100,000 TB-affected individuals over the next 5 years, including expansion to countries in South Asia such as Bangladesh, Pakistan, and others with a high need for TB support.

Metrics for WhatsApp Chatbot:

Usage Metrics:

• Number of active users engaging with the chatbot.

• Frequency and duration of interactions per user.

• Number of messages exchanged per session.

Impact Metrics:

• Periodic pre- and post-engagement surveys assessing changes in knowledge, attitudes, and behaviors related to TB care and stigma.

• Monitoring of user-reported improvements in mental wellbeing and perceived satisfaction with the support received.

• Analysis of user inquiries to identify common concerns or areas needing further support.

Pre- and Post-Engagement Surveys for WhatsApp Chatbot:

Pre-survey prompts gather baseline knowledge and perceptions about TB. Post-survey questions assess changes in disease literacy, treatment literacy, understanding of stigma, and mental health challenges after interaction with the chatbot.

Metrics for YouTube:

Engagement Metrics:

• Number of views on TB-related educational videos.

• Average watch time per video.

• Number of likes, comments, and shares on videos.

• Subscriber growth rate.

Impact Metrics:

• Number of individuals reached through YouTube campaigns.

• Pre- and post-engagement surveys to measure changes in awareness, empathy, and stigma.

• Analysis of comments and feedback for sentiment analysis regarding mental wellbeing and perceived improvements in understanding of TB care.

Pre- and Post-Engagement Surveys for YouTube:

Pre-survey questions assess participants' disease literacy and their awareness of available support services. Post-survey questions will evaluate the impact of educational content on disease literacy, treatment literacy, understanding of stigma, and mental health challenges.

Privacy & Security Best Practices:

• Clear Privacy Policies: Informing patients about data collection, usage, and sharing.

• Consent Management: Obtaining explicit consent before collecting personal health information.

• Minimum Necessary Data: Collecting only necessary data to reduce the risk of data breaches.

• Data Retention Policies: Implementing strict policies to ensure secure disposal of patient data when no longer needed.

To track individual users on YouTube, we'll encourage survey participation by including calls-to-action in videos and utilizing unique survey links. Engagement through annotations, community features, and social media will also be emphasized.

By adhering to best practices for privacy and security, we’ll ensure patient trust and confidentiality. These strategies align with our commitment to providing effective support and improving outcomes for TB-affected individuals and families.

Our solution leverages audio-visual materials and a WhatsApp based Chatbot to engage, inform, and build capacity of TB patients providing them with the disease literacy, treatment management and psychosocial support they need to fight TB effectively. The core technology powering our solution includes:

1. Audio-Visual Support & Informational Materials: We use engaging, survivor and expert led, multilingual, content such as videos, interactive modules, and educational presentations to deliver information to patients. These materials are designed to be engaging, accessible, and culturally relevant, ensuring effective knowledge transfer and skill-building among trainees without the barriers of literacy.

2. AI-driven Insights: Our solution integrates AI-driven insights to analyze community feedback on an ongoing basis (tracking metrics, usage patterns, content queries etc)  enabling us to design and tailor content and delivery to specific needs and contexts. AI algorithms help us identify trends, gaps, and opportunities for improvement, allowing us to continuously refine and optimize our programs for maximum impact. Additionally, AI-powered tools may be used to automate certain aspects of support, assessment, and follow-up, streamlining processes and improving efficiency.

3. WhatsApp : Using a universally available technology platform like whats app, we will build the infrastructure to deliver, manage and monitor relevant information to the audience in need. Using a combination of technologies and core capacities,  that allow us to design, manage and monitor complex automated conversations, we will have a system set up that allows us to run multiple versions of our materials in multiple languages on different platforms (Whatsapp & YouTube) and personalize it for different segments of our target audience.  This will also be supported by dissemination on secondary platforms such as Facebook and Instagram 

By combining audio-visual technologies with AI-driven insights, our solution enhances the effectiveness, scalability, and sustainability of TB care training initiatives, ultimately leading to improved health outcomes for TB-affected communities.

We have 6 full time staff, 12 part - time TB survivors, 20+ experts on contract and fellowship working on this solution team.

6 years

Ensuring diversity, equity, and inclusion (DEI) is a core value deeply ingrained in our organization's ethos, extending from our leadership team to our collaborations with communities affected by TB. Our leadership team embodies a diverse array of backgrounds, experiences, and perspectives, ensuring that decisions are made with input from a spectrum of viewpoints. This includes, linguistic, regional  (50%) and class diversity, sexual  and gender minorities(30%), and  it especially includes people affected by  TB, HIV (25%) who lead some of the core design of our work.

Recognizing that populations that are to be served must lead,  diversity strengthens our innovation and problem-solving capacities. We particularly focus on integrating and prioritizing lived experiences, community inputs and narratives, and historiography to ensure we integrate diverse perspectives.  We also actively seek to increase representation of underrepresented groups, including women, ethnic, caste minorities, and marginalized communities, at all levels of our organization and projects. Ours is a women and queer  dominated team which includes TB survivors and advocates. We are committed to providing equitable opportunities for growth and advancement for all team members, irrespective of their background or identity. 

In our collaborative efforts with communities affected by TB, we prioritize inclusive practices and respect for diverse perspectives. We engage directly with community members, TB survivors, their families and communities, especially in high-burden and low-income, vulnerable groups. We listen to their voices, understand their needs, and compensate them equitably for their contributions to our initiatives (our approach  intrinsically  is based on lived experience and we compensate folks for their time and inputs). Our goal is to foster a culture of mutual respect and connectedness , where community members feel valued, supported, and empowered to drive positive change in their own communities. We prioritize open dialogue, actively seeking feedback and input from community stakeholders to ensure that our initiatives are responsive to their needs and aligned with their goals.

Our business model centers around providing value to TB-affected individuals, their families  and communities by offering innovative and comprehensive patient support that remains a critical gap in their care. We understand that the key stakeholders in our model are the TB-affected individuals and their families  who seek accurate information, guidance, and support throughout their treatment journey.

For TB-affected individuals and their families, we offer a range of products and services tailored to their needs. These include a WhatsApp chatbot and online multilingual resources providing reliable information on TB diagnosis and treatment, guidance on managing side effects, coping strategies for stigma  and mental health challenges, and inspirational stories from survivors. We utilize participatory methods and design thinking to ensure that our content is community-led, engaging, culturally relevant, and gender-responsive. Through community meetings, focus groups, and surveys, we gather insights and feedback to continuously improve our offerings and address the specific needs of different communities. By providing easily accessible resources via digital platforms, we aim to  engage, empower, inform  TB-affected individuals and build their capacity  to manage their care, associated challenges  and improve their treatment outcomes but also mental well-being.

Our revenue model is based on a combination of funding sources, including grants and partnerships. We seek funding from government agencies, philanthropic organizations, and international development agencies to support the development and implementation of our programs. Additionally, we explore opportunities for collaboration with healthcare institutions, NGOs, and corporate partners to deliver our training programs and services. We also offer fee-for-service arrangements for customized training programs and technical assistance tailored to the specific needs of healthcare providers and organizations. By diversifying our revenue streams and leveraging strategic partnerships, we ensure the sustainability and scalability of our impact.

To achieve financial sustainability, we intend to rely on a combination of donations and grants from organisations interested in working in Public Health with a focus on infectious diseases such as TB. We are actively identifying and cultivating relationships with potential donors and corporate partners  who align with our mission and vision and are engaged in issues of improving patient care and support. 

Additionally, we plan to explore opportunities for partnerships with corporate foundations and sponsors  as well and philanthropic foundations to secure funding for our initiatives. In particular, we will seek to work with foundations that are working directly with governments in South Asia to ensure commitment and sustainability.

Previously we received a grant of $25000 from New Venture Fund for our work on TB Pe Charcha. We believe that the rigor brought to the selection process for this grant and our subsequent success in securing funds is a testament to the promise of our solution. 

Also we will work with national and state level governments in India to seek both financial but also distribution support to ensure that this solution is sustainable and broad based reaching as many people who need it.