Invasion of privacy of people living with HIV by medical institutions
Association Stronger Together Skopje (the Association) believe that the North Macedonia Ministry of Health’s data system, MojTermin leads to medical data of patients being processed and accessed by all medical professionals, without any categorization of medical data by sensitivity or legitimacy and necessity, which represents an unwarranted invasion of privacy. In particular, this increases the visibility of HIV-status of patients to medical professionals who are not directly involved in the treatment for HIV or have no legitimate aim to have access to the HIV-status of patients in their electronic medical file, which often results in discrimination. The research project activities will be implemented by the Association Stronger Together, in consultation with the Agency for Electronic Health and other relevant institutions.
Invasion of privacy of people living with HIV by medical institutions
Organisation Name
Association STRONGER TOGETHER Skopje
Country/Jurisdiction
North Macedonia
Grant Amount
EUR 16,478
Current Status
Research complete
Grant type
Pre-litigation Research Support
Description
Association Stronger Together Skopje (the Association) believe that the North Macedonia Ministry of Health’s data system, MojTermin leads to medical data of patients being processed and accessed by all medical professionals, without any categorization of medical data by sensitivity or legitimacy and necessity, which represents an unwarranted invasion of privacy. In particular, this increases the visibility of HIV-status of patients to medical professionals who are not directly involved in the treatment for HIV or have no legitimate aim to have access to the HIV-status of patients in their electronic medical file, which often results in discrimination. The research project activities will be implemented by the Association Stronger Together, in consultation with the Agency for Electronic Health and other relevant institutions.
In 2024 and 2025, the Association carried out research preparing for litigation challenging medical institutions in North Macedonia for discrimination and violations of the right to privacy of people living with HIV.
The Association completed and published two reports: one looking at the legal framework of medical data protection in North Macedonia, and the second comparing three EU member states (Slovenia, Estonia and Portugal) and their legal framework concerning medical data protection, with the goal of mapping possible legal or technical solutions that could be implemented in North Macedonia.
The Association held an event in February 2025 to present the research and receive feedback. Participants included representatives from the Ministry of Health, the Data Protection Agency and the medical chambers in the country. The Ministry of Health has acknowledged the issues presented by the Association and agreed to take steps to overcome these issues. Additionally, the representatives of the medical chambers and various medical specialists concurred that there should be a different level of access to medical data of patients, based on necessity. There will be a series of consultation meetings with the Ministry of Health and other relevant institutions to develop revised by-laws that would better regulate the access to medical data and incorporate the principle of proportionality in accessing medical data. Given this positive outcome, the Association decided that litigation is not necessary at this stage.
"MojTermin leads to medical data of patients being processed and accessed by all medical professionals, without any categorization of medical data by sensitivity or legitimacy and necessity, which represents an unwarranted invasion of privacy"
Strategic Goal
- To open a dialogue and discussion on how medical data is processed, accessed and used and how illegitimate access to medical data can lead to discrimination.
- To limit the unnecessary processing of medical data of patients, including people living with HIV, by medical professionals and subsequently, decrease the number of cases where the HIV-status of a patient is disclosed to third persons.
Media and related links
Organisation Name
Women’s Link Worldwide
Image credit: Photo by National Cancer Institute on Unsplash