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PATIENT ADVOCACY SYSTEM IN HUNGARYAuthor: dr. Titusz Fábián
’Szószóló’(Spokesperson) Foundation for Patients’ Rights, Budapest, Hungary
Introduction, beginnings
In 1997, the Hungarian Parliament adopted a New Health Care Act, which came into force a year later. The framing of this act became necessary due to the changes occuring at the level of the European legal system: those who framed the act kept the principle of being adjusted to the European norms in view. In harmony with the Declaration of Amsterdam and with the Convention of Bioethics, the act proclaims the patients’ rights for self-determination and all the rights of the patients that have been established in connection with that. The patients’ rights have been incorporated into the act as a separate chapter and it creates the official position of Patient Advocate (or Patient Ombudsman/Patients’ Rights Representative).
In 1996, after the establishment of Szószóló Foundation, during the preparatory phase of constructing the act of health care, the demand was raised to utilise the accumulated experience of the Foundation for creating the act. We took part in constructing the statute and undertook to assist the work of lawyers before creating the act, and to analyse in a model experiment whether the experiences actually work in practice.
Szószóló Foundation launched a model experiment in 1997, that is, before the act came into effect, testing whether the system of representing patients’ rights can be put into operation in Hungary. The aim of the programme was to develop mechanisms, which ensure the prevalence of human rights, and the rights of patients in the health care system.
In this project, patients’ rights advocates started to work in 7 Hungarian hospitals from March, 1997 and later, from 1999 on in several psychiatrics institutes as well. Before starting their work, the advocates attended a 6-month long intensive training course, and later on they also regularly consulted with top experts and with each other about their experiences. The positive example of the hospitals taking part in the model experiment voluntarily proved that the ombudsman institution does have its due place in the health care system of Hungary.
In addition, the implementing decree of the act relied partly on the Foundation’s experiences.
Present situation
The institution of advocating patients’ rights was officially launched in July, 2000, when 54 advocates started to work under the control of ÁNTSZ (National Service of Medical Officers). At present, 55 advocates work in the country (13 in Budapest, 42 in counties), covering the different geographical regions.
Usually 2-3 advocates work in each counties, therefore several institutes may belong to a single advocate. Quite a lot of them have to cover 5-6 hospitals. Owing to this, one representative can only spend 2-3 hours in a hospital once or twice each week. A few of them work full-time, but the majority of the representatives are employed part-time. This can cause rather unfortunate situations because in cases of certain kinds of grievances it is essential that patients’ representatives should be on hand at all times for patients.
According to the present rules, the position of patients’ rights advocates can be fulfilled by inviting a competition: the applicant must have a university diploma, no criminal record, he or she must attend a training course and take a successful examination. The position requires a versatile character since, according to the statutes, the knowledge of law, health care and medical ethics are also necessary for meeting the professional expectations. The patients’ rights advocates are in legal relationship of employment with the county or metropolitan institute of Medical Officers’ Service. The concerned unit of medical care (hospital) is obliged to offer a suitable room for the advocate, whereas the additional requirements of patients’ rights advocates are guaranteed by the Medical Officers’ Service. The Medical Officers’ Service cannot give instructions for the advocate concerning his or her tasks determined in the provisions of the law.
The advocates’ work is co-ordinated by the Co-Ordination Council of Patients’ Rights. The Council takes part in instructing the advocates, keeping a record of them, training them and co-ordinating their work.
The Hungarian patient advocacy model is fundamentally a rights-based representation. The Hungarian health system is still suffering from many serious problems and this affects the patient advocacy system. The system attracted very strong criticism from the outset. Patient advocates’ work is very difficult, and it can sometimes be a very hard task to be accepted by patients, doctors, nurses and other medical officers. Doctors, particularly high ranking ones, tend to ignore their presence and accuse them of interfering in professional matters and of being unable to make judgements on medical issues.
The doctors argue that no one should intervene in the doctors’ decisions and that the operation of the advocates shakes the patients’ trust in the doctors. Others said that the Hungarian society had not been yet prepared for this modern institution, people don't know what it actually is about.
But no one can doubt that patients need someone to represent their rights, they really require an institution that is capable of providing information and act on their behalf.
Patients’ representatives -despite any contrary beliefs- are not working against doctors. We know from experience that a representative can perform a really useful function in hospitals and clinics. They can resolve conflicts and can help doctors, nurses and other medical staff with their problems. They are also well-placed to help public health employees become acquainted with their rights. The representative mediating between the patients and the institute, can provide a human face in an often impersonal health care system. Tensions and conflicts can be addressed and subsequently solved by them.
The accumulated experience shows that the main part of complaints arises from the absence of proper information. Quite frequently, there is no communication between the health care institute and the patients, the patients do not understand their doctors and cannot ask suitable questions. Their right for being informed is infringed and this can lead to several conflicts. In these cases the patients’ rights advocates have important roles, who, as mediating agents, mitigate the conflicts, so to say, act as “translators” between the doctors and patients and call the attention to the significance of supplying accurate information. The communication disorders between the doctors and patients, as well as the conflicts arising from them, are successfully solved in most cases by the mediation of the patients’ rights advocates.
A key facet of the representative’s role is informing the patients of their rights, that is, to make them recognize that they do actually have rights. It’s a general phenomenon that a considerable proportion of patients are wholly unaware of the Health Care Act – sometimes they don’t know that patients have rights at all.
Patient Advocates also play an important role in the course of the complaint procedure, especially in the daily business of receiving, categorizing and investigating complaints. They assist and give a helping hand to the patients and their relatives through correspondence regarding these complaints. Patients are usually unaware of who or which institution will be of help to them. Representatives officially record the complaints and their resolutions, and the complainant is entitled to decide if his or her personal details should remain confidential or enter the public sphere. The collected cases, complaints may comprise a substantial amount of information. If they go through the hands of the medical officer of the given county, it may even give rise to abuses.
A much harder problem, however, is how to treat the complaints related to conditions and quality of health care. Patient Advocates can give advice to the management of the institutes and call their attention to the complaints. The advocates can suggest solutions for the better distribution of the financial resources, however, they are not able to make up for the deficit of the budget of health care.
Unfortunately the public health care system lacks financial incentives, there's no payment by result facility. The financial provision made for medical staff in the industry is fixed to the civil servant salary scale, resulting in a lack of motivation from the medical staff in their services to patients.
Szoszolo
The ’Spokesperson’ Foundation was established in 1994 with the aim of monitoring the existing system. The Foundation gives legal help to patients and provides information for any member of the pubic who approaches us.
The Foundation analyses the rules and the practice related to patients’ rights in Hungary, it co-operates with other domestic and foreign organisations of patients’ rights, moreover, informs the public about questions of significance related to patients’ rights.
In June, 2000 the Foundation established its consulting centre of patients’ rights with the aim of helping the citizens with becoming aware of their rights related to health care. This centre assists people in finding solutions for their problems, in finding the responsible bodies and organisations and entering into relations with them. The Centre keeps in close touch with patients’ rights representatives working in Hungary and help their work wherever possible. The Professional Consultation Day held regularly every month offers a forum for the advocates where they can get to know one another better, exchange their experiences, and this forum also offers the possibility to discuss the problematic cases together. The patients’ rights advocates often resort to the Centre for advise, and the centre often passes on the complaints to the responsible advocates. It often happens that the solution of a given complaint is achieved by the joint activities of the patients’ rights advocate and the centre.
Deficiencies of the system
Based on our own impressions, on reflections received from patients, on professional consultations we are permanently informed about the operation of the system of representing patients’ rights in Hungary.
Complaints are quite frequent: 5-8 complaints are reported to our office daily, consequently, when talking about the representation of patients’ rights, there is no ground for being proud of the state of affairs in this field.
Those who hand in complaints at the Consultation Centre often refer to the work of the patients’ rights advocates, and quite a great number of them were not satisfied with their work, in 20-25% of the cases.
Often, the patient, the complaining person does not even consult the patients’ rights advocate, does not trust him/her and feels that he/she is biased in favour of the health care institution, since he/she belongs to the “other party”.
They are convinced that the system should be modified, developed further on, so that it could operate with greater efficiency.
Another problem originates from the fact that there is no proper solution for filing the documents in the archives and for protecting the data.
It seems almost impossible to solve these problems within the present structure.
Transforming the system
According to the Health Care Act, Patient Advocates have been appointed within the framework of the Medical Officers' Service. This situation is rather unfortunate, because the essence of the advocacy system is that the advocate must remain independent.
Those in favour of the system of advocating patients’ rights have thought of an entirely independent ombudsman system which would be integrated under the Office of Parliamentary Ombudsmen. The point of guaranteeing independence for the advocates is an indispensable condition for the adequate operation of the system.
Several solutions may arise concerning the transformation of the ombudsman institution. One possibility is, that the institution could remain within the frames of ÁNTSZ, however, it should have greater independence.
An example: the central organisations of ÁNTSZ include the National Centre of Public Health, which operates as an organisation whose economic activities and sphere of authority are partly independent. It could also be imagined that patients’ rights advocates are organised within a similar organisation, which would operate as an independent entity, having an own, independent budget.
The other possibility is that the system should be withdrawn from the official health care system. Here the institute of ministerial commissioner could be considered: the system would be integrated under an authorised commissioner.
In summary, such a solution is needed which could guarantee the system’s independence from ÁNTSZ but, at the same time, it would offer a fair professional control and data protection.
Offices of patients’ rights would be needed in each county, co-ordinating and assisting the work of 2-3 advocates operating in the given county.
Adequate infrastructure should be established for them so that they could work more efficiently. If they had the chance to make use of a car, telephone, a secretary, a computer, the whole county could be covered, from the hospitals to the clinics. The advocate could cover the whole district belonging to him and he could be present everywhere in time where he is needed.
Also, a nation-wide organisation is needed. The National Office for Representing Patients’ Rights could serve as professional control, moreover, the Co-Ordination Council could also be located there. The county offices of patients’ rights would also be integrated under that.
Training
Patients’ Representatives really require specialized vocational training, but the lack of an official professional training course for them has been a significant problem since their formal appointment. Our foundation has developed a special training program of five semesters (proved to be quite useful in our experimental program)- unfortunately, it has not yet been put into practice.
However, a post-graduate training course for patients’ representatives will commence at the University of Pécs later this year. The training course will consist of two semesters and the prospective representatives will be required to sit for a final exam with post graduates receiving a graduation certificate on completion of the course. The final examination will be given by the ÁNTSZ.
Additionally to this, it would be very beneficial if further educational programmes and professional training schemes were organised for them later on.
In order to increase the efficiency of the system, both the state and the civilian spheres should endeavour to develop new mechanisms to control and improve the system continuously and, if necessary, to make changes in it.
Although there have been many positive developments, in actuality, the present day situation is still far from satisfactory. Nevertheless, we hope to continue to help to make the necessary corrections and refinements, for the improvement of the Public Health Care System in Hungary.