Science Summit at United Nations General Assembly (UNGA78)

Introduction and aims

Citizen science is defined as a practice of public participation, collaboration and co-creation in all aspects of scientific research to develop knowledge and policies to address public health challenges. By empowering communities, we build trust between communities, researchers and policymakers, a key ingredient in getting concerted responses to public health challenges. We also encourage citizens to take ownership of these challenges by acknowledging the health issues in their personal contexts. In particular, such a participatory approach is essential to ensure that human agency is preserved in the research and development of digital technologies and Artificial Intelligence (AI) for health.
Emerging digital technologies also present interesting solutions for citizens to participate in research, but they have yet to be effectively used to create an enabling environment for citizen science to be established in our societies. We note that there are systemic barriers and socio-economic inequities to consider when implementing digitally-enabled citizen science approaches to avoid widening the existing digital divide and health disparities. This session on ‘Citizen Science for Digital Health and AI Research’ aims to explore how citizen science for digital health and AI research can be established and sustained, as well as how existing technologies can enable engagement.

Abstract
The International Digital Health & AI Research Collaborative (I-DAIR) and its global academic partners, namely United Nations University Institute in Macau (China), Universidade Federal do Rio Grande do Sul (Brazil), African Population and Health Research Center (Kenya), Oxford University Clinical Research Unit (Vietnam), Dr. Rajendra Prasad Government Medical College (India) and Makerere University Centre for Health and Population Research (Uganda); and civil society partners, namely eBASE Africa (Cameroon), Zimbabwe National Network of PLHIV+ (Zimbabwe), Wireless Access for Health (The Philippines), Climate Institute (Indonesia), RD Foundation (Nepal), Rural Development Academy (Bangladesh) and Amref Health Africa (Kenya); are proposing a session to explore how citizen science can contribute to more inclusive and collaborative research for digital health and AI for health, as well as the type of infrastructure and technologies needed to create an enabling environment for citizens to participate sustainably. By fostering active public participation in health research, we build stronger partnerships between scientists, citizens and policymakers, which can contribute towards achieving Sustainable Development Goals (SDGs) 3 and 17, ensuring healthy lives and well-being for all.

The 2.5-hr session will consist of a keynote (15 mins), followed by two panel discussions, and a closing remark (15 mins). Each panel discussion (25 mins) will be preceded by a presentation on the topic of interest (15 mins) and followed by an interactive question-and-answer session (20 mins). The opening keynote will lay the foundation for the session by highlighting the role of citizens in health promotion and disease prevention, with a particular focus on their potential for digital health and AI research.

The first panel will explore how to establish citizen science for digital health and AI research. A presentation preceding the panel discussion will showcase a mixed-method study conducted by I-DAIR and partners assessing citizens’ opinions about the application of the citizen science approach and the use of digital enablers. This study was conducted in Bangladesh, Cameroon, India, Indonesia, Kenya, Nepal, The Philippines, Uganda and Zimbabwe. The panel discussion will subsequently examine the: i) contribution of citizen science to the achievement of SDGs; ii) roles of academic, philanthropic, civil society and international organizations in promoting the citizen science methodology in digital health and AI research projects; and iii) type of infrastructure and capacity development needed to provide the enabling environment for active and sustainable citizen participation.

Finally, the second panel will examine the use of existing digital technologies to enable the engagement of citizens. I-DAIR and partners are developing participatory approaches allowing citizens’ active participation to go beyond data collection and extend into modelling and collaborative policy development. The second presentation will showcase the use of participatory modelling approaches in building agent-based models for disease outbreak management in Brazil, Vietnam and Kenya. The panel discussion will further examine the: i) use of digital tools to scale up and sustain participatory activities online; ii) use of generative AI, with a focus on large language models, to support these activities; and iii) the need for transdisciplinary research to advance the citizen science approach.