Implementation of the patient's right to obtain information in the concept “health and human rights”

Introduction

The Constitution of Ukraine proclaims the protection of the basic values of society - the life and health of citizens. The right to health is a fundamental human right. In legal science, a common understanding of such categories of medical law as “secret about the state of health”, “medical secret” and “professional secret” has not yet been established. The relevance of this study also emphasizes the active development of information technology, the introduction in Ukraine of e-health systems “E-Zdorovya”, “e-Health”, and “Helsi”, which include the use of electronic prescriptions and medical records, electronic medical histories of patients and requires additional legal ways to protect information.

These data indicate the scientific and practical significance of this work. Therefore, the observance of the patient's right to save his information should be a clear priority of modern medical reform in Ukraine. The disclosure of medical secrets can lead to mental suffering and material loss to the patient. This will be the basis for compensation for non-pecuniary damage by a person whose actions led to a violation of the confidentiality of medical secrets. Thus, the problem of realizing the patient’s right to access information in the field of medical activity, the ways of its protection in Ukraine and the whole world is quite acute and relevant.

Theoretical framework

In this paper, we consider certain aspects of the legal regulation of the implementation of the patient’s right to access to complete and reliable information in the field of medical activity and how to protect it when studying the concepts of “health and human rights” and “the concept of medical confidentiality”. So‚ “The concept of medical confidentiality” is important for protecting patients, for adapting a doctor to his social role, and also for protecting universal values and public health (Rieder P., Louis-Courvoisier M., and Huber P. 2016). Patients, telling personal information about the functions of their body, physical and sexual activity and data on the history of the disease, should not be afraid of its spread (Mishra, N. N., Parker, L. S., Nimgaonkar, V. L., and Deshpande, S. N. 2008). Schafer A., Northover J. (1985) examined patients' right to access medical records. Tavakoli N., Isfahani S.S, Piri Z., Amini A. (2013) turned their attention to the right of patients to access the electronic medical record in the e-health system, which is also very important. The advantage of such access to their records allows them to better understand their condition and treatment. Confidential information about an individual includes information about the health of that person. In the healthcare sector, maintaining patient confidentiality is very important (Mishra, N. N., et al. (2008). The legislatures of most countries in the world have already passed laws and implemented policies regarding the provision of medical information (Yarmohammadian, M. H., Raeisi, A. R., Tavakoli, N., and Nansa L. G. 2010). Doctors should follow patients' wishes for access to their information on diagnostic and treatment protocols (Sullivan R.J., Menapace L.W., and White R.M. 2001).

Erickson, J., and Millar S. (2005) note the important role of not only the doctor, but also nurses in promoting and protecting patient rights regarding confidentiality. Sullivan R.J., et al. (2001) indicate that doctors and nurses underestimate the number of patients who need detailed information about their diagnoses. Patients claim that their doctor must provide them with information.

Byrne I., Ezer T., Cohen J., Overall J., and Senyuta I. (2015) explains the rights and obligations of patients and health workers, the forms and methods of protecting these rights, including medical secrets. Some scholars have studied patients' rights to information in accordance with international standards and national laws of individual countries.

So‚ Casas, V. and Parada, R. (2008) studied the rights of patients to information in Belgium, France, Italy, Spain (and Catalonia), Switzerland and the UK and noted that patient does not always know about this right, and the resources to satisfy him are often inaccessible. Talbot S. (2013) examined issues of medical confidentiality in Eastern Europe and Central Asia, and pointed out that it has serious consequences for vulnerable or marginalized people. Michalak K. (2014) established the concept and disclosed the content of “medical secrets” in the legislation of Poland, also pointed out the obligation of the doctor to keep the confidentiality of certain medical information.

When interacting with medical institutions and health care providers, the patient in most cases includes discrimination, abuse and violation of his fundamental rights. Often there is a violation of the patient's right to confidentiality and privacy (Byrne I., Ezer T., Cohen J., Overall J., and Senyuta I. 2012). Thus, the need to further study the problems of legal regulation of the patients' right to access information in the field of medical activity and how to protect it is an urgent problem in the concept of “health and human rights”.

Methodology

The methodology of this study is based on the use of general scientific and special methods of cognition. Comparative legal and comparative methods have proved useful in studying legislative acts regulating the preservation of medical confidential information by a person who received it and legal cases of its publicity. The formal logical method was used to determine the criteria for differentiation of individual legal structures in terms “professional secret”, “medical secret”, “patient” and “sick person”. Methods of modeling, analysis and synthesis made it possible to identify the legal basis for protecting the patient's right to information, which constitutes medical confidentiality, types of legal responsibility for its disclosure, and the shortcomings of its legal regulation.

Results and discussion

The right of each adult patient to reliable and complete information about his state of health, including the right to access to relevant medical documents relating to his health, is stipulated by Article 285 of the Law of Ukraine No. 1618-IV of 18 March‚ 2004. Information is any information and / or data that can be stored on tangible media or reflected in electronic form. “Information protection” is a combination of legal, administrative, organizational, technical and other measures that ensure the preservation, integrity of information and the proper procedure for access to it (Article 1) (Law of Ukraine No. 2657-XII of 02 November‚1992).

The following legislative provisions are the legal basis for the protection of information in the field of medical activity in Ukraine: it is forbidden to collect, store, use and disseminate confidential information about a person without his consent, unless otherwise provided by law, and only in the interests of national security, economic welfare and human rights (Art. 32 Law of Ukraine No 254k / 96 of 28 June, 1996); the prohibition to require and provide at the place of work or study information about the diagnosis and treatment methods of the patient (art. 39-1 Law of Ukraine No. 2801-XII of 19 November, 1992); on the state of health of an individual, on the fact of seeking medical help, a diagnosis, as well as information obtained during his medical examination (art. 286 Law of Ukraine No. 435 -IV of 16 January, 2003). Based on the foregoing, information on the patient’s health can be disseminated without his consent only if two conditions are simultaneously present: 1) if the corresponding case is prescribed by law, and 2) only in the interests of national security, economic welfare and human rights.

It should also be noted that in the legislation of Ukraine the content of the concepts of “patient rights” is not defined, but the terms “patient” and “sick person” are only used in separate legal acts relating to the field of medical activity. In the following, we consider the concept of “patient” in international documents and in national legislation, in scientific sources. So, at the international level, the definition of “patient” is a healthy or sick consumer of medical services (Declaration on Patient Rights Policy in Europe). In the decisions of the European Court of Human Rights, the term “patient” is defined as a person who: 1) agreed to the provision of medical services to him by a medical institution (for a person under the age of 14 years and an incapable person, medical intervention is carried out with the consent of their legal representatives); 2) requires medical attention (with the exception of some cases) for medical reasons. The ability to be a patient does not depend on the legal capacity of an individual, since even persons recognized as incompetent and sent to compulsory treatment in psychiatric institutions have certain rights and obligations (Patients' rights in the decisions of the European Court of Human Rights). Consequently, a “patient” is a healthy or sick consumer of medical services who has agreed to provide him with medical services by a medical institution (with the exception of some cases) and needs medical attention and has certain rights and obligations.

In national legislation the definition of this term is given as the individual who has applied for medical care and / or to whom such assistance is provided (art. 3 Law of Ukraine No. 2801-XII of 19 November‚ 1992) or “a person who has been hospitalized in a health care institution” (art. 287 Law of Ukraine No. 435 -IV of 16 January, 2003). Based on the foregoing, “patient” is a person who has applied for a medical service / or is provided with such a service.

The term “patient” should be distinguished from the term “sick person”. The first term characterizes a person as a participant in certain legal relations, while the term “sick person” describes a person’s state of health (Zelinsky A.‚ 2006, p. 141). A patient is a person, regardless of age, gender, race, religion, nationality, state of health and other factors, which exercises his right to receive medical care (Galay V.O.‚ 2010, p. 13). Mariyev V. V. (2011) believes that the legal relationship between the patient and the medical institution arises during treatment and ends during discharge from the hospital or the completion of outpatient treatment, which is recorded in the patient’s medical card.

From our point of view, the patient is an individual (healthy or sick) who exercises his right to receive medical services or to whom such services are provided by health care institutions (medical staff).

The rights of the patient are universal, they apply in all situations of medical services. The patient’s right to receive complete and reliable information about his health is an inalienable right of every person. If information about a person’s illness can worsen his state of health, damage the treatment process, medical workers have the right to limit it (part 3 of article 285 of the Law of Ukraine No. 1618-IV of 18 March‚ 2004). He has the right to determine in which specific cases he can provide the patient with incomplete information about his state of health, in such case the realization of the human right to information depends on the decision of the medical staff. In practice, patient’s health information is often disclosed. The reasons for the violation of the right of safe the information about the patient’s health, first of all, are ignorance of the law and a misunderstanding of the harm that can be done by violating the patient’s privacy. So‚ in medical practice there are situations when a doctor, when examining patients in the ward, without asking for patient consent, announces the results of the examination, laboratory and instrumental studies, the patient’s diagnosis to other doctors in the presence of other patients. Today TV shows using confidential medical information have become popular (Bachynsky V.T., Padure A.M., Vanchyljak O.Ya., Syvokorovska A.-V.‚ 2015, p. 295).

Biletska G.A, Kovalyova Y.O. (2014) indicate that when a patient returns to work after a previous illness, the diagnosis or its code according to the international classification (ICD 10) can be indicated on the sick leave. In judicial practice, there are cases when a presentation of a paper with an encrypted diagnosis (it can be decrypted with ICD 10) or with the seal of a medical institution such as a neuropsychiatric or infectious diseases hospital created situations with fatal consequences for working patients with subsequent dismissal.

Very often in national legal documents the concept of “medical secret” is used in various interpretations. So, medical workers and other persons who, because of their professional or official duties, became aware of a disease, medical examination and their results, the intimate and family side of a citizen’s life, are forbidden to disclose this information, except in cases provided for by legislative acts (art 40 Law of Ukraine No. 2801-XII of 19 November, 1992). The content of “medical confidentiality” includes: 1) a secret about the state of health of a person; 2) the fact of seeking medical help; 3) the diagnosis; 4) other information obtained during a medical examination of a person (art. 286 Law of Ukraine No. 435 -IV of 16 January, 2003). Other legal acts containing “medical secrecy” contain information about recipients, as well as persons who have stated their consent or disagreement to become donors in case of death (art. 11 Law of Ukraine No. 2427-VIII of 17 May‚ 2018). The following is also a medical secret: 1) about past and existing diseases of the donor, 2) that the drug is taken by the donor, 3) about other forms of risky behavior that can contribute to the infection of the donor with infectious diseases that are transmitted through the blood and in the presence of which donor function may be limited (art.14 Law of Ukraine No. 239/95-vr of 23 June‚ 1995). Thus, the information that a doctor can receive can be divided into: 1) information about the disease, 2) information about intimate life, 3) information about the family life of the patient; 4) other information obtained during a medical examination of a person. The subject who received the information constituting medical confidentiality can be an individual, namely medical worker and other person associated with the performance of professional or official duties.

In the scientific literature there is no common understanding of such categories as “secret about the state of health”, “medical secret” and “confidential medical information”.

So, Akopov V.I. (2004) by “medical secrecy” means that all information received from a patient or revealed during his medical examination or treatment is not subject to disclosure without the consent of the patient. Other researchers believe that the content of “medical secrecy” may include the following information: 1) the fact of a person seeking medical help; 2) disease (diagnosis, course, prognosis); 3) applied treatment methods and their effectiveness; 4) the person who asked for help - his past, physical and mental disabilities, intimate relationships, etc.; 5) the patient's family, home lifestyle (Petrukhin I.L.‚1989, p. 24). There is also the opinion of scientists that the term “medical secrecy” includes information about the disease, personal and intimate life of the patient, which became known to medical workers in the process of fulfilling their professional duties (Bedrin, L., Shirinsky P. Zagradskaya, A., 1986, p. 24). From our point of view, the concept of “medical secrecy” is information about the disease, medical examination and results, treatment and prevention of the disease, the intimate and family aspects of a citizen’s life, the fact of a person applying for a medical service, and other information obtained during a medical examination of person. Subjects who received information constituting a medical secret do not have the right to disclose this information, except as provided for by legislative acts.

Medical confidentiality is often considered as part of the broader concept of professional secrecy. Professional secrecy is characterized by the following features: 1) it is a medical profession where confidential information becomes known to a medical professional; 2) confidential information (the patient voluntarily trusts a person performing professional duties in the field of medicine), as a rule, relates to the patient’s private life (Mikhailov S.V., 2012). Information may be considered a professional secret if it meets the following requirements: 1) the information was entrusted or became known to a person only as a result of his professional duties; 2) the person to whom the information is entrusted is not in the state or municipal service in local authorities (otherwise the information is considered official secret); 3) a ban on the distribution of trusted or known information that could harm the rights and legitimate interests of the trustee; 4) information is not a state and commercial secret (Bachilo, I.L. Lopatin, V.N. Fedotov. M.A. 2001, p. 538). Medical secret corresponding to the listed features, respectively, is a kind of professional secrets.

An important place in the content of medical confidentiality is occupied by “confidential medical information”. This term includes information about a person’s state of health, a history of his illness, the purpose of the proposed research and therapeutic measures, and a forecast of the possible development of the disease. The doctor is obliged to provide, at the request of the patient, his family members or legal representatives, unless such complete information may be harmful to the patient’s health. The owner of confidential medical information is the patient, who decides whether it can be distributed in any way to any person (Marushchak A I., 2007, p. 25).

It should be distinguished groups of subjects of medical confidentiality. Such subjects should include: 1) medical workers and 2) other persons who, in connection with the performance of professional or official duties, became aware of information constituting medical confidentiality. This group of persons should be divided into subgroups: 1) persons who do not belong to medical workers (for example, ambulance drivers); 2) pharmaceutical workers; 3) medical students during training and clinical practice; 4) employees of insurance organizations; 5) employees of health departments, and 6) employees of educational institutions; 7) persons to whom information was transmitted in the manner prescribed by law, such as bodies of inquiry, pre-trial investigation, courts, etc. (Senyuta I.Ya‚ 2007‚ p.196).

In the future, it is necessary to consider the legislative framework for cases when the doctor must provide information about the patient’s health status without violating the norms of Ukrainian legislation.

The first is the transfer of information about the health status of minor children to parents (adoptive parents), guardians, trustees (part 2 of article 285 of the Law of Ukraine No. 435 -IV of 16 January, 2003; article 39 of the Law of Ukraine No. 2801-XII of 19 November , 1992).

The second - the provision of information on the results of HIV testing, on the presence or absence of HIV infection in a person is allowed only to: 1) the person against whom the test was conducted, the parents or other legal representatives of such a person; 2) other medical workers and healthcare institutions (solely in connection with the treatment of this person), 3) other third parties (only by a court decision) (part 4 of article 13 of the Law of Ukraine No. 1972-XII of 12 December, 1991).
Third, ‒ information about the treatment of a person in a drug treatment facility can only be provided to authorized bodies if this person is brought to criminal or administrative liability (Article 14, part 5 of the Law of Ukraine No. 62/95-VR of 15 February‚ 1995).

Fourth, ‒ if the patient agrees to the dissemination of such information (part 2 of article 21 of the Law of Ukraine No. 2657-XII of 02 November, 1992).
Fifth - it is allowed to transmit information about the state of mental health of a person and the provision of psychiatric care without the consent of the person or without the consent of his legal representative for: 1) organizing the provision of psychiatric treatment to a person suffering from a severe mental disorder; 2) the implementation of pre-trial investigation, or judicial review at the written request of the investigator, prosecutor, court and representative of the authorized body for probation (Article 6 of the Law of Ukraine No. 1489-III of February 22, 2000). At the same time, without the written consent of the person and the psychiatrist providing psychiatric care, it is forbidden to publicly show a person with a mental disorder, take a picture of him or make a film, video, sound recording and listen to interviews of a person with medical workers or other specialists while providing him with psychiatric care.

The sixth is to report on committed violence in the family to authorized units of the National Police of Ukraine and to provide information on the prevention of domestic violence at the request of authorized bodies (art. 9 Law of Ukraine No. 2229-VIII of 07 December‚ 2017).

Seventh is during the trial, when information is necessary for the realization of their rights, which is the subject of medical secrets and is not subject to disclosure. Such information may be requested in court proceedings by filing a petition for the collection of evidence (art. 137 Law of Ukraine No. 1618-IV of 18 March‚ 2004).

The eighth case - the bride and groom have the right to be mutually informed about the state of health (art. 30 Law of Ukraine No. 2947-III of 10 January‚ 2002).

The ninth case is when there is a threat of the spread of infectious diseases, evasion of a mandatory medical examination or vaccination against infections of the established list (art. 26 Law of Ukraine No. 1645-III of 06 April‚ 2001).

The tenth case in which the doctor must provide information on the patient’s health status without violating the laws of Ukraine - in the event of the death of the patient his family members or other individuals authorized by them have the right to be present when studying the causes of his death, to get acquainted with the conclusions about the causes of death (Part 4 Art.285 Law of Ukraine No. 435 -IV of 16 January, 2003). Thus, the state guarantees the confidentiality of information about the deceased and the provision of such information (Art. 7 Law of Ukraine No. 1102-IV of 10 July‚ 2003‚ Law of Ukraine No. 2657-XII of 02 November‚ 1992). In relation to the deceased, a certificate of cause of death is issued, which indicates the cause of death and the disease that led to it, which is directly related to the disclosure of medical secrets. This document is issued to the spouse, close relative, other relatives or the legal representative of the deceased, and may also be issued to another person who has taken the responsibility to bury the deceased (this list is not established at the legislative level). Thus, practically any natural person can become the owner of information constituting the medical secret of the deceased, and the law does not establish legal liability for disclosing it in this situation.

The guarantee of medical secrecy is that doctors and other medical workers cannot be questioned as witnesses in either civil or criminal proceedings on information constituting medical confidentiality (Article 70 of the Law of Ukraine No. 1618-IV of 18 March‚ 2004, Law of Ukraine No. 4651-VI of 18 April‚ 2012). The doctor’s code of ethics indicates that in carrying out his activities, the doctor must ensure confidentiality and keep medical secrets (Article 17 of the Ukrainian Medical Council Minutes No. 18 of January 27, 2006), but this article does not contain an exhaustive list of cases that provide disclosure of “medical confidentiality”. All of these cases in the law are provided for during the life of the patient.

It is prohibited by law to disclose information constituting medical confidentiality, and legal liability is provided for its unlawful disclosure, including civil liability (art. 286‚ Law of Ukraine No. 435-IV of 16 January, 2003), administrative (art. 9 Law of Ukraine No. 8073-X of 07 December‚ 1984), criminal (art. 132, 145, 387 Law of Ukraine No. 2341-III of 05 April‚ 2001). In addition, it is worth noting that the legal guarantee of medical confidentiality is that doctors and other medical workers cannot be questioned as witnesses regarding information constituting medical confidentiality (art. 51 Law of Ukraine No. 1618-IV of March 18, 2004; and art. 65 Law of Ukraine No. 4651-VI of 18 April‚ 2012). Thus, the person who received information constituting medical confidentiality, taking into account possible harm to the patient, is responsible for the disclosure of such information: 1) disciplinary, 2) civil (subject to a claim for damages), 3) administrative or 4) criminal liability. In practice, patient health information is often disclosed. The reasons for the violation of information about the patient’s health are ignorance of the law and a lack of understanding of the harm that can be done by violating the patient’s privacy.

Conclusions

The rights of the patient are universal, they apply in all situations of medical services. The patient’s right to receive complete and reliable information about his health is an inalienable right of every patient. Patient - an individual (healthy or sick) who exercises his right to receive medical services or who is provided such a service by healthcare institutions (medical workers). National legislation has a large number of direct legal acts regarding the protection of the patient's right to information in the field of medical activity. Medical secrecy is a type of professional secrecy and its preservation is the main component of the legal mechanism for protecting human rights. Medical secrecy - information about the disease, medical examination and results, treatment and prevention of the disease, the intimate and family aspects of a citizen’s life, the fact of a person applying for a medical service, as well as other information obtained during a medical examination of a person. Subjects who received information constituting medical secrecy do not have the right to disclose this information, except in cases provided for by legislative acts, legal liability is provided for its unlawful disclosure.