Empowering Youth Voices in Digital Health Rights Governance

In May 2024, members of the Digital Health and Rights Project attended the World Health Organisation’s annual meeting – the World Health Assembly. Hear from Molly and Caleb on key learnings and what comes next:

The Digital Health and Rights Project (DHRP) brings together international social scientists, human rights lawyers, health advocates, and networks of people living with HIV, to conduct research and advocate for rights-based digital governance in Colombia, Ghana, Kenya, Vietnam, and globally. We use a transnational participatory action research approach, centering the voices and leadership of diverse young adults to define the future of human rights in the digital age. 

Last week, we attended the World Health Assembly (WHA) in Geneva to share our work, learn from others, and advocate for digital rights. Key events included a side event that DHRP hosted in collaboration with Digital Transformation for Health Lab on achieving Universal Health Coverage through a rights-based digital transformation. Here, we heard from speakers including Allan Maleche (Executive Director, KELIN), who said, “With all the global excitement about digital health, human rights has been an after-thought. More needs to be done to support countries in addressing these issues.”

Young People at World Health Assembly 2024

We also attended a High-Level Roundtable on Artificial Intelligence (AI) at the WHO. Here, Dr Tedros (Director-General, WHO) noted that AI will change how we work with major implications for healthcare systems and that we need to collaborate across sectors to harness benefits of AI and protect against potential risks. It was a shame to see that civil society and communities were not represented on the panel especially given that decisions made by multilateral stakeholders such as the WHO, alongside academics and the private sector, will most affect these groups. As DHRP, we commit to advocating for the meaningful participation of civil society and communities particularly when it comes to these high-level spaces.Young People at The Digital Health and Rights Project

While it was nice to see “Youth” being mentioned in various discussions “here and there,” we believe there was still room for greater emphasis. Many organisations, including the WHO, are increasingly recognizing the importance of prioritising youth participation in digital health governance and we hope that more investment can be made in facilitating young people and community engagement.

Speaking of meaningful participation, we also attended many inspiring events focused on youth participation in global health. This included a High-Level Dialogue with the WHO Youth Council, Youth Delegates, and parliamentarians.

Key takeaways of this discussion included the need for adequate funding and capacity building for youth organisations, to consider what ‘representation’ means critically, and the need to integrate youth participation beyond a separated Council structure. We are excited to continue collaboration with the amazing young people that we met to further youth participation in global health governance.

Challenges for Youth Participation

Unfortunately, we were also made acutely aware of the barriers that young people face in participating in such events. Our own youth representative, Martin Ame-Nuquaye was unable to attend the WHA in person due to his visa being declined.

Speaking of this experience, Martin said: “Young people from the Global South do face more challenges like long processing times for visas causing delays leading to missed deadlines and opportunities. High refusal rates, likelihood of visa applications being rejected, limited international credit history, discrimination and bias (perceived discrimination based on nationality, race, or country of origin) – are all factors that contribute to limiting young people’s access to global conferences and events.

Caleb Masusu (Global Voice and Democracy Manager, Restless Development) added “Civil society organizations invest a lot of resources to support young people’s attendance at global events, yet barriers persist. Young people are a critical voice in digital governance. To ensure their meaningful participation at events like the World Health Assembly, we urge WHO and other global event organizers to  streamline visa processes and provide dedicated funding for youth engagement.”

Looking forward, DHRP will be continuing advocate for the increased recognition and support in the governance of digital technologies and AI for advancing the engagement and opportunities for youth and marginalised communities based in low- and middle-income countries. 

Follow our work: @DigHealthRights 

Contact us: molly-pj@stopaids.org.uk

Authors

  • Molly Pugh-Jones

    Molly Pugh-Jones (She/Her) is the Advocacy Manager at STOPAIDS. She has over six years of experience in youth and community organizing and currently works supporting the coordination of global advocacy for the Digital Health and Rights project.

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  • Caleb Masusu

    Caleb Masusu is a Development studies graduate from Mulungushi University, Zambia. He currently works as the Global Voice and Democracy Manager for Restless Development and is responsible for driving Restless Development’s global work towards the Voice and Democracy Strategic Priority Area, and supports young people to shift power and create new pathways for achieving more just, sustainable and democratic futures. Caleb has over 5 years progressive experience building capacity, designing and implementing adaptive social behavioural change interventions and possesses a wide understanding of development especially youth focused Life skills and gender & Sexual rights programmes as well as human rights. He has extensive experience building capacity of different development players including youth, government departments, FBOs and CSOs and has facilitated over 50 training sessions and trained over 500 volunteers, 16 NGOs. In 2023 he will be finalising his masters in Public Health public policy at the university of Lusaka in Zambia.

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Empowering Youth Voices in Digital Health Rights Governance

by Molly Pugh-Jones Reading time: 3 min
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