PATIENTS' PERSONAL INFORMATION RIGHTS GET VIOLATED IN ARMENIA

A patient’s personal data confidentiality rights get violated every time other people (other patients for that matter) are present at a screening a patient is undergoing or other patients are there at the doctor’s, while the patient shares about his or her complaints.

Healthcare experts say information related to patients’ health condition is treated with much neglect in Armenia’s medical practice; the core issues pertaining to the confidentiality of patient information remain unsolved.

Violations of patient rights pertaining to confidentiality of personal information can be observed on more than one level.

Violating confidentiality rights: medical ethics

The issues related to the confidentiality of health condition of patients are regulated by international law. Zhenya Mayilyan, head of the

Real World, Real People NGO, says in Armenia, though, the protection of information related to patients’ health condition is not there as a social demand.

“We were on a regional visit recently for a training intended for doctors. At some point one of the participating doctors left the room and said out loudly in front of some 20 doctors of a small community: ‘The diagnosis has been confirmed with Gohar’s daughter-in-law’,” says Mayilyan in a conversation with Ampop Media, adding: “I don’t think the person meant anything evil: we just have that culture-specific tendency of sharing everything with everyone.”

Mayilyan believes the problem is observable anywhere across the country, not just the regions.

The head of the non-governmental organization that is providing services of medical care and support to people with HIV, says the cases of violations of personal information rights are more frequent among the socially vulnerable groups of the society. Those are people with HIV/AIDS, drug-addicted people, people with mental problems, and so on.

“A person is not stigmatized for having pneumonia. But when health information about people from socially vulnerable groups becomes available for public, others’ attitudes to those people change dramatically,” Mayilyan says.

Rights advocate says breaking the confidentiality of health related information about people from vulnerable groups simply harms those people.

“We have had a case of a woman, whose health-related information became a word of mouth in her community, and shut the doors of employment for her and for kindergarten for her kid , forcing her to change her place of residence.”

Mayilyan says the organization also had cases, when the patient’s medical chart had HIV written in huge red letters. The answer that would follow an inquest into the reason of such stigmatization would be – to warn the doctors working with the patient to take precautions. Yet, diseases are given special coding, which helps specialists learn of them to avoid problems.

Zhenya Mayilyan says her organization prepares reports covering the cases of violations of patients’ health-related information confidentiality rights in vulnerable groups. The reports are anticipated to be followed by a task force to address the issue.

Confidentiality of patient information is protected by law

RA Law on Amendments in the Law on Medical Aid and Services to Population entered into effect in 2020. It defines, among other things, the idea of the confidentiality of patient information, stipulating the requirements to it in a legislative act. According to the passed amendments into the law, even a visit to a medical institution is viewed as a confidential information.

Violetta Zopunyan of the Center for the Rights Protection NGO views the amendment as a positive move, but points to the issues of its application in practice.

“That the idea of patient confidentiality concept was defined two years ago was a positive move; yet, we face lots of issues in practice. Let’s take the pregnancy registration process: the document is circulated in a given medical institution in a way as to have every chance to be read by anyone, being left on top of a doctor’s desk and making the health information on it totally visible to others; the first page on pregnancy registration chart includes information on a woman’s HIV status.”

The expert says the obligation to guarantee patient confidentiality has to be made part of employment contract for anyone being accepted into a medical institution.

The Healthcare and Employment Inspectorate responded to Ampop Media inquest informing that it does not consider including protection of patient information into employment contract of people rendering medical aid and services a mandatory measure.

The inspectorate says it obtains no information on whether any employee of a medical institution has ever lost a job due to the failure to provide protection of patient confidentiality.

“A patient’s medical history is quite accessible to others. A doctor works, while a patient history is on the desk, and will be left there in case the doctor gets an emergency call,” Melik-Nubaryan says.

Melik-Nubaryan believes amendments in law will not bring the sought for results unless a culture of confidentiality is formed.

“People have to know that their health issues are very sensitive matters. It is highly important to make sure changes are there on cultural level, besides the legislation. So, it is fundamental to speak about those things. People have to understand that is not normal to share about health issues, nor letting anyone do so. I have never heard of a case of standing responsible for making patient information public.”

Laws are not a guarantee; it is the culture that needs to be changed

“Even the most perfect legislation is unable to guarantee an anticipated result,” Davit MelikNubaryan, an expert in public health matters, says.

“People come see a doctor accompanied by family members, doctors talk to family members. It’s a matter of culture, not just regulations. This is viewed as something quite normal on both sides. We need to shape public awareness on these issues,” Melik-Nubaryan says.

The expert recalls a number of situations frequently observed at policlinics: doctors consult or provide medical help to patients in rooms along with other doctors, because oftentimes the clinics lack proper conditions to ensure privacy, or make sure documents do not pile up on doctor’s desk not to be exposed to nurses or third parties.

The law envisions punishment for the transfer or publication of health-related personal information by an individual or an organization entitled to process such information as prescribed by law through publishing it in mass media outlets or by sharing in channels of communication without the written consent of the person or the person’s legal representative.

The actions described in part 1 Article 145 of the Criminal Code, which have resulted in harsh consequences through negligence may lead to up to 4 years in jail.

“Years ago, parents in settlements would inquire a patient history of the bride-to-be for their son at policlinics to make sure they knew the woman who was going to become part of their family. Doctors would share about it, but people would prefer to ignore that,” Gevorg Hayrapetyan, the head of the agency for the protection of personal information of the Ministry of Justice of Armenia, said to Ampop Media.

Hayrapetyan says years ago it used to be a matter a system. Only few were aware of the importance of confidentiality of personal data.

“People used to silence the problem, but the situation is different these days,” Hayrapetyan assures.

He says following a number of leakage cases in the COVID-19 days, the agency he heads, got a chance to organize a training on the protection of personal information for several hundred medical workers.

“Unlike the regular routine, in the period of pandemics, the number of players increased, and so we organized lectures for everyone on how to deal with personal data,” Hayrapetyan recalls.

As to problems voiced by healthcare professionals, Gevorg Hayrapetyan assures the agency has not received any complaints so far. “We haven’t heard any grievances on that and no one has so far come to get some advice. We will at least have some statistics, if anyone raises an issue.”

Ruzanna Durgaryan, the director of policlinics N13, says one of the most frequent cases of such breach is when a mother-in-law visits the medical center to get an excerpt from the medical chart of a pregnant woman.

“We don’t know in person, since most often than not the person is registered at some other medical institution. Whatever the case, the district physician first checks whether a person is ok if the document is handed over to the person who visits the clinic, and only then do we hand it over to the requestor,” Durgaryan says in response to an inquiry by Ampop Media.

Regulations pertaining to confidentiality of patient information

Tatev Tokhyan, an expert in social rights, thinks despite the assurances of the Ministry of Health that a series of TV programs are underway to increase public awareness of the issue, the confidentiality remains a problem among medical workers.

Tokhyan says well-designed qualification trainings are required to ensure proper awareness. “Way too often medical workers do not really realize they are making third party health information public. Patients shall be equally informed about the essence of patient information confidentiality.”

The Vanadzor chapter of the Helsinki Citizens’ Assembly has received inquiries from citizens and organizations into the possibility of having health-related confidential information.

The inquiries particularly referred to the order by which a health-related confidential information may be made available, as well as the bodies, which may get access to such information. The investigation undertaken by the assembly has shown that there is no such order by which any information related to the health of a patient may be made available to third parties unless such consent has been given by the patient.

Article 11 of the law on help and services rendered to population envisions cases and bodies that are entitled to disclose the health related personal information classified as confidential to third parties.

“However, unless the procedure is defined, it seems those bodies and individuals, possessing personal information, disclose the confidential information without a legal ground”, Anahit Ghazaryan, a representative of the Helsinki Citizens’ Assembly-Vanadzor, told Ampop Media

The draft regulation on setting the procedures of disclosing the confidential health related personal information without the patient’s or his legal representative’s consent was put to a public debate. Ghazaryan adds, the draft act does not define the grounds on which the provision of such information may be rejected.

The law on help and services rendered to population defines the agencies, which are entitled to inquest and get the respective information without patient’s consent. In such case, a justification shall be submitted, Ghazaryan says. “The Law on Psychological help and services, which has the definition of confidential information pertaining to patient’s health, does not stipulate requirement for a justified decision [to inquire respective information], which raises further concerns,” Ghazaryan explains.

Ghazaryan predicts situations, when applications are submitted on standardized forms, without any substantial justification and reason, which will not have anything to do with any investigative activity, and information gets leaked from medical institution for purposes other than that.

That is why, Ghazaryan says, procedures and clear guarantees, as well as justified decision requirements, are much needed.

Police, investigative bodies, bodies authorized to hold medical and social examinations request medical information on daily basis. Since the procedures are not set up yet and so patients do not give a consent for sharing their personal information, it looks like the confidential information is shared without a definite procedure.

One of the objectives of introducing electronic system of healthcare is the organization of proper storage of patient information. Healthcare experts say the system may help in increasing the safety of personal information.

The move from paperback patient histories and registry books to the system Armed will ensure the confidential personal information gets available only to those with appropriate access. Yet, the experts say, any system, ideal as it may be, bears risks, which have to be foreseen and precautioned before the roll out for public use.