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Public opinion as a tool for monitoring
Mass violation of the patients’ rights, professional negligence, and lack of legal culture in health care system lead to number of deaths, disabilities and thousands of extra bed days. The fact that the problem is critical for Ukraine is clear for both, representatives of human rights public associations, and for the patients themselves. However, patients’ safety and legal protection has not yet become the object for professional analysis and public control.
In January-March 2007, within the project of International Renaissance Foundation "Law and Health Initiatives", Program Research Center "Socioconsulting" conducted a sociological survey "Study of the public opinion as a tool for monitoring patients’ rights in Ukraine". The results are already summarized and open for the public.
The research was aimed at improving protection of the rights and safety of patients in the health care system of Ukraine by creating a mechanism of public control by monitoring of the patients’ rights. There were the following objectives:
· To develop the research methodology through identification of indicators of the patients’ rights violations on the basis of surveying the public opinion.
· To test the methodology in the field.
· To develop recommendations on public monitoring of the patients’ rights and safety.
The first stage of the research was developing the system of indicators of the patients’ rights violations. The system was based on 14 patients’ rights defined by the European Charter on Patients’ Rights (2002). Indicators of the patients’ rights violations were derived from the rights, and sociological measures – from the indicators. These measures were transformed into questions of standardized questionnaires for the general population and hospital patients. Rate of the patients’ rights violations was obtained by calculating the percentage of positive answers of the respondents to one or several questions of the questionnaire.
Fielding of the core questionnaire was conducted in February, 2007. Results for the public survey are based on face-to-face interview with nationally representative sample of 1,501 respondents, and interview with the hospital patients (100 respondents). Public results are considered to be accurate within ±2.5%.
Public opinion on the health care system in Ukraine
The research results have demonstrated that respondents are mainly dissatisfied with the current state of the health care system in the country. The majority of them consider the health care system unsafe (63%). More than quarter of people is dissatisfied with the quality of medical care in the state medical institutions. 80% of the respondents believe that for the past 5 years situation in the health care system have not changed or got worse due to lack of the specialists, specifically in small towns and villages, low qualification of health care personnel, insufficient state funding which makes patients pay from their own pocket for the medical service and medicines. At the same time, low income of the majority of respondents does not allow them to turn to the private health care institutions, to employ the modern methods of diagnostics and treatment.
Violations of the patient rights
The awareness level about the patients’ rights in Ukraine can be considered insufficient. The issue of the patients’ rights has not yet become a matter for the majority of citizens, 20% of the respondents were not interested in the problem at all. Mainly, the respondents demonstrated loss of hope that the patients’ rights can be protected in state health care institutions; somewhat better they considered the situation with private institutions. Every fifth respondent (22%) noted that s/he experienced violations of his/her rights in a health care institution. The majority of respondents believe the only right they have – the right for getting medical assistance (67%), the rest of the rights are observed in less than 50% of cases and the right for compensation is practically not guaranteed in Ukraine.
Measurement of violation of patients’ rights demonstrates that the majority of them are satisfied only partially. The majority of problems arise with those rights which directly or indirectly require financial resources: because of the insufficient funding of public health the following rights are violated: Right of Access; Right to Preventive Measures; to Avoid Unnecessary Suffering and Pain.
At the same time, financial problems of the health care system lead to the facts of a low quality, delays, and negligence in health care. Namely, the Right to the Observance of Quality Standards is very often violated because of the lack of medicines, medical equipment, poor facilities (36-49%).
Positive answers of the respondents about being forced to cease their treatment because of the lack of money also demonstrate limited access to the medical assistance provided by the state institutions. Most often people renounced diagnostics (41%) and purchase of the prescribed medicines (48%). Every fifth respondent renounced hospital treatment (22%), 15% of the respondents renounced surgery interventions.
The Right to Respect of Patients’ Time is also seriously violated – about 50% of the respondents noted that they experienced postponing or refusal of the health care because of long waiting time, inconvenient working hours, late arrival of the first aid ambulance.
The Right to Safety is significantly violated: one third of the respondents spoke about long waiting for medical assistance, prescription of wrong medicines and/or doses as well as hospital infections. Quite often patients become victims of medical errors: one fifth of the respondents (22%) noted such experience themselves or their relatives/friends. Even higher proportion of the respondents – 35-39% have heard about cases when medical errors caused death, disability or work incapability of patients. Over one third of the respondents believe that reasons for the medical errors are negligence and low qualification of health care personnel.
The Right to Privacy and Confidentiality is also violated: while only 7% of the respondents reported about this, in certain cases this number is much higher. First of all, there is a mass violation of the Right with regard to people that have some "socially dangerous" disease (e.g., HIV/AIDS, tuberculosis, hepatitis).
Health care institutions do not always guarantee their patients the Right to Avoid Unnecessary Suffering and Pain. Thus, about 5% of the respondents faced refusal to give anesthesia, and over 30% to give anesthesia for free.
Absence of individual approach to a patient in Ukraine is a typical phenomenon and violation of the Right to Personalized Treatment borders here with the medical error. For instance, 28% of the respondents reported prescription of a medicine, which might have a side effect, and 25% spoke about not taking into account other diseases they have while treating the first one.
Every fifth respondent whose rights were violated tried to apply his/her Right to Complain. However, the majority of victims had negative experience in protecting their rights: they either received formal reactions to their complaints (50%) which were passed from one state institution to another (43%) or did not get ay answer at all (34%).
Survey of the hospital patients who have recently completed treatment demonstrated that every fifth experienced violation of his or her rights. Most of these violations were about the Right to Free Medical Assistance: 66% of the patients had to buy medicines, 41% to buy disposal medical equipment (syringes, droppers, etc), and 28% to pay for their treatment. The patients’ right to safety is significantly violated because of the low quality of care and insufficient qualification of the staff. Less than half of the respondents were satisfied with the overall facilities and treatment conditions.
Reasons for violation of the right of patients
Analysis of the data demonstrates that violations of the patients’ rights in Ukraine are caused by a constellation of factors that have systematic character, namely:
Ø Lack of funding for the health care system leading to the lack of the state guarantees on medical assistance.
Ø Provisioning health care is not in line with the present day requirements and does not secure the quality standards for health care.
Ø Legal relations between a health care institution/doctor and a patient are not defined, there is a lack of regulation mechanisms of these relations.
Ø Lack of legal culture in both, health care staff and patients.
Conclusions and recommendations
The results have demonstrated that the patients’ rights in Ukraine have not yet become a subject of the public discourse. The majority of the respondents know about their rights, have experienced violations but only few of them attempt to protect their rights. However, many respondents support the idea of establishing non-governmental patients’ organisations in each city or town.
However, the first step to overcome the problem of the patients’ rights violation should become, first of all, raising awareness about the problem among the public and health care workers. For this, it is suggested to introduce the system of public monitoring which will be performed by NGOs, health care professional associations, self-government bodies.
Secondly, along with this activity it is necessary to improve the legislation, to create a mechanism for legal regulation of relations between a patient and a doctor. For assessment of violations and especially the level of safety of the patients it is necessary to conduct research which will allow to see the scope and understand the nature of these violations, to develop a national programme for patients’ safety (which exist in many countries of the world) and to monitor efficiency of its implementation. The level of the patients’ rights violation can be significantly decreased by increasing the legal culture of health care workers as well as patients. There is a need for developing and introducing special training courses for medical students, to introduce special educational programmes into higher medical schools. NGOs protecting the rights of various groups of patients and vulnerable groups should be responsible for raising awareness among the general public.
Information is provided by the Research Center "Socioconsulting"
Contact person: Irina Demchenko irina@sociocon.org.ua
Contact person at IRF:
Mariya Svchuk, Public Health Initiates Program Director – m.savchuk@irf.kiev.ua
Mariya Vynnytska – Law and Health Initiatives Coordinator vynnytska@irf.kiev.ua
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Khrystyna Basiliya, Public Relations Manager ..•
tel: +380 (44) 461 97 09 |
fax: +380 (44) 486 76 29
electronic mail: basiliya@irf.kiev.ua
office: Kyiv, Artema Street, 46, Head Office
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