Health Education for Women and Girls Must Not Be at the Expense of Data Privacy, Security, and Rights

Photo credit: Creator: Hello World Copyright: Infidels Photo Agency

Health and education are inextricably linked. As the Covid-19 pandemic swept the globe, we saw waves of misinformation, misunderstanding, and lack of access to factual and helpful information.

While COVID-19 disrupted social and economic aspects of almost everyone’s lives—with women being disproportionately negatively impacted—the pandemic also advanced the field of digital health in many ways. World governments and multi-national organizations, recognizing the acute need to create digital tools for health education, rushed to respond which resulted in a proliferation of digital health services and tools.

This acceleration in digital health innovation included solutions for telemedicine and teleconsultation, remote monitoring, connected devices, digital health platforms, and health apps. Mobile phones and mobile internet, however, continue to be the most accessible global tools for information dissemination and connection.

Are these new digital platforms sustainable? Findings from a 2022 report in the Journal of Medical Internet Research indicate that they are not, most likely due to remaining structural barriers. Until more robust digital health governance frameworks are built, sustainable digital health transformation likely won’t occur.

The digital divide became even more stark during the pandemic, demonstrating this need. The GSMA Mobile Gender Gap Report 2022 notes that only 60% of women in LMICs now use the mobile internet, compared to 71% of men. This slowdown in digital inclusion for women highlights that renewed investment and focus in addressing the digital gender divide is necessary.

But concurrently, we must ensure women’s safety and security as they access vital digital health information and education tools. As digital health becomes more ubiquitous, so too does the quantity of personal health data collected. The collection, use, and transfer of personal health data is fueling a debate over who owns and controls that data, raising questions over an individual’s right to privacy.

Women and girls increasingly access basic health information or connect with health services digitally and are often forced to “check away” access to their personal health data. This lack of informed consent disallows women from understanding where their personal data ends up and for what purpose. Examples abound: Facebook handing over data to law enforcement in Nebraska and Idaho as a form of evidence to prosecute women, to a suite of fertility and pregnancy apps in high income countries misleading consumers and selling or sharing their intimate data, to girls in Africa being tracked while using a menstruation app.

The right to bodily autonomy, whether in person or digital, is a basic human right. Women have the right to say no.

It is unconscionable that women and girls must trade away the right to bodily autonomy to access basic health services including health education. How we—collectively and individually—respond to these challenges determines whether digital health interventions truly benefit the women and girls most in need or become a vehicle for further harm.

We need to take concrete, coordinated action to address data privacy and security concerns specific to impacts on women and girls to prevent further harm and, so that the next time we must build digital tools at warp speed, we do so with less risk of compromising the safety and well-being of those already suffering the most.

While we understand that many across the globe are engaging in aspects of this conversation, there seems to be a lack of a cohesive, focused voice in moving this important policy work forward. Kati Collective is interested in creating collective action on advancing data security, privacy, and rights for women and girls globally.

If you want to take part, please email us at info@katicollective.com to share your reflections, experiences, and suggestions. Let’s work together to ensure that women and girls receive honest and factual health education that keeps their personal data private and secures their autonomy and agency.