Between Scylla and Charybdis: Re-designing Collection and Re-use of Data to Determine Access to Services for Youth

By Stefaan G. Verhulst and Moiz Shaikh

Data, when harnessed and re-used responsibly, has the potential to improve services for marginalized populations, encouraging greater access to basic amenities like food, health, safety, and education. One population sector in particular, youth (ages 19–24), too often finds itself on the outside of the possible benefits of re-using data. Worse, a system meant to empower and support youth can unintentionally and inadvertently harm and marginalize them. This dual nature of data re-use can create a data paradox, a “between Scylla and Charybdis” scenario. On one side, Scylla, a six-head hydra; on the other, Charybdis, a whirlpool of enormous proportions. Much like the mythical creatures working in tandem, the scenario often means youth are caught between two equally unappealing alternatives.

Navigating the Perilous Waters: Odysseus Braving Scylla and Charybdis. By artefacti, generated with AI. Licensed through Adobe Stock Images. Please contact Adobe for further re-use.

The World Bank has called for, “strengthened national data systems in order to realize the full potential of the data revolution.” Yet data re-use must be tempered with responsible re-use. “The more data is used, the greater the potential for misuse. Careful design of regulations to strengthen cybersecurity and protect personal data is essential to engender trust. In a global survey of 80 countries, only 40 percent had provisions for best-practice data regulations, including fewer than one-third of low-income countries, although many are now beginning to adopt them.” [1].

Some of the issues at hand related to data re-use and youth:

• The Invisibility Issue: The absence of data on youth creates an out-of-sight, out-of-mind scenario. Without appropriate data, it’s challenging to understand or address the needs and gaps in services provided to them,
• The Over-Collection Conundrum: Multiple agencies often collect overlapping data, leading to inefficiencies and potential misuse. Without a coordinated approach, it becomes increasingly difficult to create a comprehensive youth profile,
• The Transparency Trap: Leaving young adults, and citizens in general, in the dark about how their information is used can create suspicion of misuse and fear. This lack of transparency can deter citizens from accessing essential services,
• Consent Complications: The binary nature of consent — either full access or complete denial — leaves little room for nuanced decision-making. When third parties, like parents or educators, give consent on behalf of youth and young adults, it robs youth of their agency to control and determine the usage of their data.

While the challenges of data collection and data re-use, and its resulting implications, are generally recognized, they are particularly accentuated in low and middle-income countries (LMIC), where the largest demographic group often involves youth. Many of these nations grapple with the need for accurate data to better serve their youth while simultaneously confronting the ethical and logistical challenges inherent in collecting such data.

There are stark realities when considering real-life scenarios:

• Refugees at Borders: Consider the influx of young refugees at borders, fleeing conflict or persecution. To effectively integrate this population into a new society, they need to be added to case file systems. The data captured could include their health, educational background, and traumatic experiences. However, this opens up potential risks — data misuse, unauthorized access, or stigmatization,
• Mental Health and Psycho-social Service (MHPSS) Needs: Addressing the MHPSS requirements of youth in LMIC countries is paramount. This often means probing into personal histories, traumas, and challenges to tailor support appropriately. Yet the act of collecting this sensitive data can be retraumatizing. Additionally, there are concerns about the confidentiality of such information and the repercussions if it falls into the wrong hands,
• Annual School Data Collection: Every year, as educational institutions open their gates, data is collected to determine the necessary services for students. From nutritional needs to learning disabilities, this information helps institutions cater to students effectively. However, in LMIC, the infrastructure for safe data storage and retrieval might be lacking, leading to potential breaches or misuse.

What is needed is a Social License, a participatory framework which legitimizes the principle of freeing up data for the public good. This Social License should aim to redefine how data about citizens, including youth, is collected and re-used to determine services. One core idea is to engage youth directly and increase their role in the process through youth assemblies. In this context, youth assemblies emerge as a critical forum in a global society where data has become the entry point of many crucial services. Involving youth is a transformative step:

• Ideation and Innovation: Youth can bring fresh perspectives and creativity. Assemblies provide them a stage to brainstorm, envision new paradigms, and propose pilot studies that might escape conventional approaches,
• Collaboration with Stakeholders: In these forums, youth do not work in silos. They actively collaborate with experts, policymakers, and service providers. This synergy can lead to robust solutions where aggregated and anonymized data can be optimally harnessed to improve service access,
• Fostering Ownership and Agency: Involving young individuals as part of the decision-making and creative process creates a sense of ownership. Such involvement not only empowers them, it also places them at the helm of change, giving them agency and responsibility in sculpting the future of data-driven interventions.

There are distinct educational and empowerment dimensions of Youth Assemblies. Data, in its raw form, can be overwhelming. Youth assemblies can serve as centers of learning, building data literacy, and moving younger citizens beyond numbers, assisting in understanding patterns, and more importantly, implications. In an era where data breaches are rampant, understanding these implications and ethical grounds are pivotal for youth in formulating data ethics.

Youth Assemblies can hold discussions on privacy, consent, security, and the moral dimensions of data collection and use. Beyond basic literacy, specialized workshops within these assemblies can train youth in ‘data stewardship.’ Data stewardship workshops can arm younger citizens with the know-how of data analysis, interpretation, and practical application.

There are numerous premises and value propositions to test behind Youth Assemblies and engagement:

• Empower Through Engagement: By involving younger citizens in data-related decisions, can we ensure the data truly reflects their needs and concerns? How to ensure engagement is not only symbolic but also results in more accurate and actionable insights?
• Skills for Tomorrow: Can a participatory approach also double as an educational experience? As youth engage with data, can they also sharpen essential skills like critical thinking, digital literacy, and problem-solving?
• Building Bridges with Cultural Exchange: By bringing together young individuals from varied backgrounds, how can we promote mutual respect and understanding? How can these interactions lay the foundation for a more inclusive society?
• Legitimacy Through Inclusion: Can data projects gain credibility when their primary subjects, youth, play a role in their formation and execution? How can participation ensure projects stay relevant and youth-centric?
• Shaping the Future Together: Data is not only about the present. Can engaging youth craft a more responsible, ethical, and progressive future for data collection and utilization?
• Balancing Power Dynamics: By including youth at the table, can we move towards a more equitable data ecosystem? Can their voices and opinions help balance out traditional power hierarchies?
• Innovation and Imagination: Can youth, with fresh perspectives, involvement bring innovative solutions, allowing us to view data and its possibilities through a new lens?

To address the unique challenges of LMIC and vulnerable populations, a Social License initiative should take several factors into account. Community-based engagement, and recognizing that a one-size-fits-all approach might be inadequate, community-based participatory processes should be emphasized. It is then possible to craft tailored strategies to meet the unique needs of different populations. Skill augmentation, with the focus on LMIC, and capacity-building exercises, will equip local stakeholders to handle data responsibly, ensuring that data’s security and ethical use.

Most importantly, there must be deep cultural sensitivity. Any program and participatory processes must be designed with a deep understanding of local cultures, values, and sensitivities. This promotes shared values that the process is respectful and non-intrusive. Through cultural sensitivity and empowerment through education, beyond data collection, programs can educate youth about their rights concerning their data, ensuring informed participants in the process.

References

1. World Bank Group (2021) Stronger Data Systems needed to fight poverty, World Bank. Available at: https://www.worldbank.org/en/news/press-release/2021/03/24/stronger-data-systems-needed-to-fight-poverty (Accessed: 22 September 2023).

About the Authors

Dr. Stefaan G. Verhulst is an expert in using data and technology for social impact. He is the Co-Founder of several research organizations including the Governance Laboratory (GovLab) at New York University, which focuses on using advances in science and technology to improve decision-making and problem-solving. He is also the Editor-in-Chief of the open-access journal Data & Policy and has served as a member of several expert groups on data and technology, including the High-Level Expert Group to the European Commission on Business-to-Government Data Sharing and the Expert Group to Eurostat on using Private Sector data for Official Statistics.

Stefaan has been recognized as one of the 10 Most Influential Academics in Digital Government globally. He has published extensively on these topics, including several books, and has been invited to speak at international conferences, including TED and the UN World Data Forum. He is asked regularly to provide counsel on data stewardship to a variety of public and private organizations.

Moiz Shaikh is an experienced professional in the areas of data governance and change management, Moiz Shaikh has led large scale systems transformation projects, enabling operational excellence in partnership with government departments, philanthropic institutions and civil society organizations. Prior to joining The Data Tank, Moiz worked for Aam Digital, a technology-for-good startup in Berlin, as their Head of Partnership and supported NGOs in the global south to adopt digital technology and be data driven. Moiz holds a Master of Public Administration from Hertie School, Berlin, a management degree from Symbiosis University and an engineering degree from University of Pune, India. He is a certified Project Management Professional (PMP).

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