ICTworks

The digital transformation is revolutionising health systems and access to health information. While these advances have improved healthcare access in low- and middle-income countries (LMIC), deep inequalities have created “digital divides” that leave many without access to essential information and services.

Efforts to regulate digital platforms have struggled to keep up with the pace of innovation. This is a particular concern for growing youth populations, many of whom are frequently online and whose voices are rarely heard in digital health governance.

The Paying the Costs of Connection study—the largest of its kind—focused on Colombia, Ghana, Kenya and Vietnam. We interviewed 302 young adults ages 18-30 who were either living with HIV, sex workers, gay men and other men who have sex with men, transgender or gender diverse, or cisgender women. We also interviewed 41 experts from UN agencies, government and civil society.

Key Study Findings

• The study is one of the largest international studies of digital human rights in health to date, and one of the few using a transnational participatory action research approach.
• Many participants described struggling to get online, due to cost of smartphones and data bundles, lack of Wi-Fi, lack of digital skills, or lack of ability to assess reliable health information.
• Young women talked more about these issues than young men and described financial dependence on partners or supervision by family members as challenges.
• For people living with HIV and members of stigmatised groups, fears of poor data protection or of being outed to the community made them reluctant to seek health information online.
• Three-quarters of young adults described technology- facilitated abuse, including verbal abuse, doxxing, stalking, blackmail, and extortion, against themselves or peers. Abuse included severe physical violence. Abuse appeared increasingly normalised among young adults.
• HIV activists and peer outreach workers said their outspoken advocacy for health rights exposed them to virulent verbal abuse and threats.
• Few of the young adults we spoke to had been successful when reporting abuse to online platforms, or in getting access to redress.
• Some were reluctant to report abuse to the police, either because they were not sure whether the abuse was legal; or because of laws criminalizing sex work and same-sex sexual relations in their countries; or due to past experiences of police abuse.
• Community-led groups were a key source of support. In one case, Vietnamese HIV activists in the study’s project advisory committee used that committee as a platform to mobilize and respond to viral online abuse. This showed that, in their view, community-led HIV advocacy networks could be an effective model for addressing technology-facilitated abuse.
• Study participants expressed resilience, determination and a strong interest in getting training in-person and online about their rights, artificial intelligence (AI), we call this “digital empowerment”.
• Many had optimistic visions of the future and called for greater accountability and transparency online, to ensure this future is realised.

4 Study Recommendations

Recommendations for governments, technology companies, funding agencies and UN technical agencies.

Digital inclusion is a fundamental human right

To tackle exclusion, we must identify the many intersecting challenges that individuals face in securing digital access, and develop supportive interventions to address them: Progressively improving quality network coverage, including in rural areas; offering access to smartphones and free or low-cost data, and structural changes. Health services must not exclusively rely on digital access.

Technology-Facilitated Abuse requires urgent action

TFA affects women, and also men, transgender people, people living with HIV, sex workers, and HIV activists/peer outreach workers who share health information online. Abuses may move between online and offline. We call for a survivor-centred approach that upholds confidentiality and autonomy of survivors. Governments must strengthen regulation of the private sector, train lawmakers and law enforcement, and raise public awareness to ensure access to redress for survivors.

Robust action by governments to protect privacy

Particularly for young adults who are living with and affected by HIV, by strengthening data protection laws and ensuring their proper enforcement. This also requires informing the public about their rights to data protection, and options for remedy if rights are infringed. Technology companies should conduct human rights due diligence, mitigate possible harms, and ensure access to redress.

Continued investment in young adults

Including investments in digital literacy and Know Your Rights training, and in civil society leadership to train, reach and engage historically marginalised populations. Young adults, women, people living with and affected by HIV, and civil society groups from LMIC must have a seat at the table to participate meaningfully in the decisions that affect their lives, including digital governance.

The executive summary of Paying the Costs of Connection study