Why Ukrainian patients are creating public initiatives like StopOdrex

In Ukraine, there is a lack of independent control over the quality of medical services, and court cases regarding medical negligence that caused serious consequences for a patient can last for years without any results. Patients who consider themselves victims of treatment and the families of the deceased are independently creating platforms to record possible medical errors and provide mutual aid. Read in the UNN article how public initiatives like StopOdrex influence the development of the state system for patient protection and control over the medical sphere.

When treatment in a private clinic leads to complications or death instead of recovery, the patient or their family effectively find themselves alone with the tragedy. The first thing the injured party must do is collect all possible medical documentation and contact law enforcement agencies. After this, as a rule, a long and complex process of establishing the circumstances of the case begins. Law enforcement agencies open criminal proceedings, appoint forensic medical examinations, interrogate witnesses, and collect evidence. 

It is the results of the examinations that are key to establishing whether the doctor's actions were a deviation from medical standards and whether there is a causal link between the treatment and the consequences for the patient. After the completion of the pre-trial investigation, the case can be transferred to court, where its consideration can last for years.

However, problems for the patient often begin at the very first stage – the collection of evidence. As explained by Maksym Herasko, managing partner of the "Maksymalnyi Zakhyst" (Maximum Protection) Law Firm, without a full package of medical documentation, it is practically impossible to prove the fact of a possible medical error. At the same time, patients often face situations where they are not given their medical history, discharge summaries, or other documents "in hand" in full. 

The point is that, in principle, it is always difficult for a patient to prove the guilt of a doctor or an institution for reasons such as, for example, very often patients are not given their medical history. Not every patient collects all certificates, all discharge summaries, all conclusions, and has the medical documents on hand that allow for the establishment of a doctor's error,

Furthermore, even with the documents available, the process of analyzing them requires specialized examinations, which are lengthy and expensive. It is at this stage that many cases effectively "stall." This is because some victims lack the resources to continue the legal battle, while others lose faith in the possibility of achieving a result.   

The public's reaction to such a system is public initiatives like StopOdrex, which collect, record, and publish (anonymously in the case of StopOdrex) reviews and stories about treatment in Ukrainian medical institutions. Such platforms do not replace the court or the investigation; however, they create an alternative space where stories of human tragedies are not lost in bureaucratic procedures and do not go unnoticed. In essence, such initiatives do not arise on their own – they are a forced step by people who were not heard by the state.

Another reason for the emergence of independent public movements is the absence of an independent body in Ukraine that would realistically assess the quality of medical services. 

Quality control practically does not exist because there are no assessment criteria; so far, they have not been introduced by anyone. By no one: neither the Ministry of Health nor the National Health Service of Ukraine (NHSU). Therefore, control indicators are, unfortunately, one of the painful topics and areas that are not yet properly present in our system as they should be,

According to Inna Ivanenko, executive director of the Charitable Foundation "Patients of Ukraine," the systemic problem could be solved by revising the format of issuing medical licenses. Following the example of Europe, licensing a specific doctor rather than a medical institution could mark the beginning of a more transparent control procedure.

Currently, the license for medical practice is obtained by the medical institution, not the doctor (unlike in most European countries). Accordingly, the medical institution bears the responsibility to the patient. This makes it difficult to hold a specific specialist accountable and limits patients' rights. It is almost impossible for a patient to independently monitor the quality of certain services, so an independent state body should take this upon itself,

Indeed, in Western countries, patients do not need to unite and create public initiatives to defend their position. There, lawsuits regarding medical negligence are a common part of the system, allowing it to self-cleanse and improve.

Court precedents shape the practical implementation of the application of medical protocols or determine the consequences of their violations in specific cases. In turn, recognizing the existence of cases of medical negligence and the effective protection of the interests of the injured patient ensure an honest assessment of the healthcare system's actions and the accessibility of information,

She also added that such court processes perform another important function – they increase the transparency of the system. When cases of possible errors or negligence become the subject of judicial review, patients gain an understanding of how the accountability mechanism works and whether it can be effective. In fact, it is about building trust in medicine as an institution.

As a reminder,

The StopOdrex public initiative collects and publishes stories of patients who were dissatisfied with treatment at the private Odrex clinic on its website and in its Telegram channel. The initiative's platforms effectively serve as a public archive – a place where people can anonymously share cases that previously went unnoticed or disappeared from the public space. According to Khrystyna Totkaylo, co-founder of the movement, a significant portion of these stories went unvoiced for years due to fear of pressure or distrust in the system. 

The movement's resources publish stories about incorrect diagnoses, post-operative complications, and improper communication between the medical facility and patients and their families. For many people who consider themselves victims of treatment at Odrex, this has become the only place where their story has been heard.