Better health: Of the people, for the people
This article is authored by Pooja Sehgal and Akhila Sivadas.
The power and capability to make ourselves healthier and improve our health outcomes lies squarely with us. Both as individuals and as a community interested in better health. This holds true specially in critical times when the uncertainties about possible break out of old and new infections looms large.

History, and research have highlighted the role of community ownership in bringing about lasting and sustainable change. From the Arab Spring, to MeToo, when people get involved at scale, big change gets sparked. Closer home, the systemic change that cooperatives have enabled, or more recently, jan bhagidari in the Swachh Bharat movement, have ensured that large scale change is not just a top-down policy owned agenda, but instead policy initiatives are suitably complemented by community engagement.
Numerous examples illustrate how community action can grow from a small spark into a significant movement. One notable instance is the anti-liquor agitation in the 1990s in Andhra Pradesh, which originated from awareness raised by the National Literacy Mission (NLC) in Nellore District. The successful campaign led to a government ban on liquor, resulting in literacy rates soaring to 80%. Initiatives like Podupu Lakshmi promoted savings and sustainable development, leading to new borewells, a community hall, and improved infrastructure. The accomplishments in Dubagunta were showcased in a primer titled Adavallu Ekamaithe (If Women Unite), highlighting the village's transformation through women's collective action. This movement evolved into a vast network of self-help groups that empowered women economically across states. As a unified group, they became adept at collaborating with the government on various health, livelihood, and social development programmes, while also asserting their autonomy and proving their effectiveness as problem solvers.
Practical experiences demonstrate that ongoing dialogue and collaboration within communities, as well as between communities and governments, can effect change across all levels from policy to service delivery. This not only builds the community's future but also positively impacts systems tasked with serving them.
There is near-universal consensus on the ability of community engagement to help achieve health and social equity. The benefits of community engagement are especially clear in the health sector, exemplified by the collective response to Covid-19 and other diseases like TB and HIV. Health programmes often demonstrate resilience, adaptability, empathy, and effective communication that foster discussions and encourage safe practices and health-seeking behaviours.
This transformative change was evident among patients living with filaria (also called Haathipaon) in the states of Uttar Pradesh and Bihar. After years of suffering from deformities and pain in isolation, compounded by guilt and a lack of awareness about the disease - specifically that filaria is transmitted by mosquitoes - many felt disconnected from the system, their communities and often, even from their own families.
For the past three years, we have been working with these patients in villages in select districts. Initially, gaining their trust was a huge challenge. Patients expressed that the emotional pain of humiliation and lack of support overshadowed their physical suffering. Women struggled with the burden of caring for their families without support, while men felt deep disappointment in their inability to fulfill the role of the provider for their household.
However, their challenges started to get addressed once they formed a patient support group, realising they were not alone and could actively manage their condition. By establishing a routine of daily exercises and proper care, they began to improve their ability to perform everyday tasks. The group fostered peer education, effectively transforming behaviors through trust and open discussions on sensitive issues. As a result, nearly 70% of those we identified learned about their disease, engaged in self-care, and experienced significant reductions in swelling, pain, and acute attacks. The patients-support groups grew exponentially from 18 in 2021 to 664 in 2024, with membership rising from 139 to close to 8,000 participants.
While regular community gatherings, and visibility through social media and mass media continue to facilitate ongoing learning and collective action, it is the combined efforts from patient support group members, stakeholders, volunteers, and their communities, that has ensured that close to three-quarters of the population they educated agreed to consume the preventive anti-filaria medicine (that the government health system provides). Improved levels of preventive drug consumption is key to elimination of such diseases – and community engagement has a key role to play in enabling this.
This initiative has been built on experience and learning from other disease control programmes. HIV interventions use similar strategies, with peer educators promoting awareness and mobilization as well as preventive behaviors. Even in the case of filaria, patient narratives are crucial, helping motivate others in their communities to focus on prevention and treatment.
Both HIV and filaria face the challenge of stigma, but patient groups promote solidarity and enhance understanding of these diseases. Empowered patients advocate for change, stress on prevention and help transform perceptions from victimhood to proactive problem-solving.
Strengthening community engagement, by involving patients and their families, and other local stakeholders, encourages healthier behaviours, often also factoring in the needs of hyperlocal, and even marginalised communities. When people become aware and are aligned as communities focused on specific defined health objectives, their individual and collective health outcomes improve. This community owned and community led effort builds resilience and encourages open discussions about health issues that were earlier considered too complex or too stigmatized to be brought into the open. There is every reason to adopt similar approaches to other health challenges, including mental health, cancer or diabetes, but it is important to create communities that have shared contexts and similar lived realities.
In summation, community engagement (1) Builds trust and cooperation, (2) Encourages shared responsibility for health outcomes and (3) Reduces stigma and fosters open conversations. Building community ownership and integrating patient-survivor experiences with empathetic and accessible systemic support can help reshape narratives around challenging diseases. These initiatives demonstrate that health is a shared responsibility, highlighting the importance of community engagement for lasting change.
This article is authored by Pooja Sehgal, health and gender communications lead, Gates Foundation, India and Akhila Sivadas, executive director, Centre for Advocacy and Research (CFAR), New Delhi.
