Blog: How do we build the world we want? Social participation for Universal Health Coverage

The Health Equity Network India convened an Equilogue in December 2022 to commemorate Universal Health Coverage (UHC) Day, which is observed annually on December 12th.

Researchers and advocates from the network, as well as from its Secretariat co-hosts, The George Institute India and the Institute of Public Health, Bengaluru, came together to discuss global perspectives on social participation for UHC. The event was moderated by Devaki Nambiar, and included a fireside chat hosted by David Peiris.

The event began with scholars Hari Sankar and Misimi Kakoti. They presented their research on the history of community involvement and action in health as part of India's National Health Rural Mission, which they documented using the Witness Seminar methodology. Misimi’s analysis focused on how state and civil society actors came together to institutionalise community action under this national policy reform effort, while Hari described how decentralisation reforms in the southern Indian state of Kerala interacted with NRHM reforms, affecting roles and services of community and system actors, including during the COVID-19 pandemic.

This was followed by the fireside chat with civil society colleagues describing work on social participation and movement-building around UHC in Australia, India, Vietnam, and on a global scale. The panellists discussed their views on the significance of social participation for health and highlighted best practices and lessons learned.

Panellist and disability rights advocate Smitha Sadasivan, India, shared her experiences working in Tamil Nadu during COVID-19, where sign language interpreters communicated with individuals with hearing-impairments via helplines offering COVID-19-related and other support. She highlighted the importance of social participation in the planning, implementation, and monitoring and evaluation of essential health services, and how it allows for the formulation of responses that serve the needs of its end users.

“Social participation is a key driver of health equity, raising awareness and recognition of the rights of groups with the highest level of health disadvantage; transforming so-called ‘vulnerable groups’ into agents and protagonists of the policies and programmes that affect them.”

Nguyen Thuy Linh, Deputy Director at the Centre for Supporting Community Development Initiatives, Vietnam, elaborated on the significant advancements made in Vietnam's response to the HIV/AIDS epidemic over the past 25 years, thanks to the crucial involvement of communities and people with firsthand knowledge in national decision and policy-making processes. The HIV response and its subsequent influence on the response to Malaria, Tuberculosis and Non-Communicable Diseases (NCDs) offers great guidance for other countries as they chart their path towards UHC.

Meanwhile, Justin Koonin, Co-Chair of the UHC2030 Steering Committee, emphasised the interconnected and interdependent nature of global citizens, and how excluding any group in social and political discourse will have whole-of-society implications. Transferring authority for health service governance from governments with a higher level of power to communities has proved an important measure to understand equity issues, and to capture the perspectives of disadvantaged social groups without leaving anyone behind. He praised The National Health Assembly Model in Thailand, Tunisia, and Iran as a good example for increasing social participation for health, as outlined in the World Health Organization Handbook on Social Participation for UHC.

” If we want the UN SDGs call to reach everyone, and leave no one behind, we need to be able to plan programmes not only in the language but in the culture of people accessing the services; we need to create demand for services by responding in culturally appropriate ways”

Abhijit Das, founder and managing trustee of the Centre for Health and Social Justice, India, shifted the conversation to opportunities in 2023 and beyond, and considered how much can be accomplished through international agreements around UHC. He reiterated the role of institutionalisation of social participation for health as an accountability lever and called for national governments to evaluate implementation of social participation for health policies and programmes, with precedence to practices that avoid tokenisation, fragmentation, and exclusion.

“UHC is a universal concern, not a public issue. We need to make it a concern for everyone. We must build allies and include new voices in the discussion of health.”

The importance of ongoing reform of policies and programmes, and active implementation of social participation of health, is too often overlooked. The COVID-19 pandemic not only highlighted but also worsened pre-existing health inequities and their underlying social determinants. In such contexts, replicating interventions and social engagement movements that have been successful in the past may no longer be similarly effective. To glean information that can be applied internationally and in various settings, we need to reflect on what we can accomplish, think about how to unite local movements, and work with allies in a reflexive manner.

The Political Declaration of the UN High-Level Meeting in 2019 incorporated the need to create platforms and partnerships to make this possible. The upcoming UN High-Level Meeting on UHC in 2023 must be used as a platform to secure more ambitious, specific, and focused commitments on social participation for health from world leaders:

“We do not want to see another political agreement that does not reach the ground level and is not worth the paper it is written on. We want to see not just a declaration, but a true implementation strategy.”

The George Institute is committed to advancing this agenda through its involvement in the Social Participation for Health: Engagement, Research, and Empowerment (SPHERE) project. Over the next four years (ending in 2025), SPHERE will work with communities to promote and assess context-specific implementation approaches, document experiences with expanding social engagement for health and draw lessons to advance the broader UHC agenda.