The Struggle for Privacy in Digital Health Systems

Access to healthcare is a fundamental right, and computer systems play a crucial role in ensuring it. However, we face the challenge of protecting our personal data from corporate exploitation in the context of digital capitalism. It is essential to expose the power structures that prioritize economic value over privacy and human dignity.

Legislative Ambiguity and Privacy Risks

In Ecuador and worldwide, the regulation of our personal data becomes a battleground between corporate interests and our fundamental rights. While Ecuador’s Personal Data Protection Law attempts to safeguard our sensitive information, it leaves loopholes that could be exploited by entities with other interests. This ambiguity is not accidental but designed to allow the uncontrolled flow of information into digital capitalism.

Within this law, data migration to foreign servers with adequate cybersecurity measures is permitted, but the lack of clear definitions about these measures leaves ample discretion to companies. This leaves users vulnerable and at the mercy of subjective interpretations, undermining the protection of their fundamental rights.

Data Migration and Lack of Clear Standards

The rapid growth of digital health companies has raised concerns about the indiscriminate collection of our personal data. Although companies technically comply with legality, ambiguous clauses in their terms and conditions do not guarantee transparency in their actions.

Storing data on foreign servers poses security and privacy risks, as it is subject to variable laws and regulations. This lack of legal uniformity exposes people to potential security breaches and data exploitation by third parties.

Ethics and Data Use in the Hands of Tech Giants

Large corporations, such as pharmaceutical and insurance companies, are increasingly involved in collecting and analyzing health data to drive their commercial agendas. The disproportionate investment in data collection reflects the prioritization of commercial interests over ethical and public health considerations.

This disparity highlights the need to reassess the predominant approach in the healthcare market, prioritizing human well-being over financial gains.

Monopoly Formation and Investments in Real-World Data (RWD)

The growth of the digital health market has led to the formation of monopolies, with a handful of companies dominating the market due to their aggressive investment and expansion strategies. These companies exploit the lack of clear regulations to indiscriminately collect personal data.

Furthermore, investments in Real-World Data (RWD) by large pharmaceutical and insurance companies are increasingly significant. These companies spend exorbitant sums — ranging from $75 thousand to $5 million per year — on acquiring and processing data to support the development of personalized therapies and evidence-based clinical decision-making. For example, some pharmaceutical companies invest millions of dollars annually in purchasing patient data.

The Urgent Need for Regulation

The current situation in Ecuador and many other parts of the world underscores the need for stronger and more effective regulation in the treatment of personal data in the healthcare sector. We must be aware that relying solely on government legislation to protect our rights is not enough. Laws can be manipulated and used in the interest of large corporations, rather than safeguarding the interests of the population.

It is evident that we need a more radical and transformative approach to address this issue. Rather than relying on state regulations that can be easily co-opted by commercial interests, it is essential to promote organization and the creation of communities that advocate for the interests of the common population. It is time to build strong and supportive social movements that fight against the exploitation and manipulation of our personal data.

Health is a basic human right, and we cannot allow it to be compromised by corporate greed and profit-seeking. It is time to reclaim our right to privacy and dignity, and to demand that healthcare computer systems serve people, not corporate interests. Only through collective action and solidarity can we build a world where health is truly accessible for all.