This is the first study, to the best of our knowledge, to map the complaints about violation of patients’ rights according to the ECPR. The charter itself is not a law but has been developed as a consensus document and a valid tool for analysis and charting of patients’ complaints about violation of their rights.
The main finding of the study was that the official documentation about patients’ complaints was not informative with regard to the violation of their right. Although there are several official pathways for patients to complain about violations of their rights, the official information was available only for less than a half of the administrative and geographical units of the Republic of Croatia. We did not receive the information on why these counties were omitted from the report. It is highly unlikely that no patients submitted complaints in missing counties, as patients’ complaints received by non-governmental CAPR came from 20 out of 21 counties.
In contrast, the analysis of the complaints to a specialized non-governmental organization for the protection of patients’ rights showed that the most commonly reported violation was the Right to Access, followed by the Right to Information and the Right to Safety. The majority of alleged violations were related to health care institutions in the City of Zagreb, followed by the Split-Dalmatia County, the second largest administrative unit in Croatia. The majority of communications from patients to the CAPR dealt with institutions from the city of Zagreb. Healthcare system in Croatia is centralized, and a large majority of official reference centres for the Ministry of Health are in different hospitals in the Zagreb area (27). More than half of all complaints dealt with hospitals (secondary level institutions), university hospital centres (tertiary level institutions) and specialists. We could not find studies from Croatia dealing with the comparison of patients’ complaints in primary and secondary healthcare settings, but a recent systematic review shows that patients generally more often express concern regarding the secondary and tertiary level of care, including problems with communication and coordination (22). Patients more often develop trusting and well-connected relations with their primary care physician (28), which has been proven to reduce the number of malpractice suits (29).
Previous analysis of the ECPR by Mathuna et al. (30) codified 15 rights of the ECPR into five different groups, to create a more workable analytical framework. The first theme is “Access to Healthcare”, including the Right to Preventative Measures, Right to Access, Right to Free Choice, Right to Respect Patients’ Time, Right to Innovation, and Right to Personalized Treatment. These rights are considered to be basic patient rights (31). The Right of Access and the Right to Respect Patients’ Time were among the most commonly identified violations in our study, accounting for more than a third of all identified violations. Access to healthcare in Croatia is recognized as a problem, particularly for patients with lower socioeconomic status (32). The Ministry of Health’s Strategic Plan for 2018-2021 emphasises the importance of equal healthcare access, especially for isolated parts and islands (27), but the is not data on whether the measures have been successful.
The Right to Health Innovations was identified in just a few cases. The knowledge of Croatian patients about clinical trials is overall rather low, and they are mostly not aware of trial registries and the availability of information for patients on clinical trials (33). Furthermore, the number of clinical trials in Croatia is declining (34). Patients’ complaints regarding the Right to Preventive Measures were also identified in just a few cases. This may be the reflection of Croatia’s long tradition of preventive public health (35). The Croatian Institute for Public Health provides broad support for different public health campaigns, including vaccination and screening (36).
The other themes in the analytical framework of Mathuna et al. (31) are “Informed consent” (the Right to Information and Right to Consent), “Safety and Quality Assurance” (the Right to Observance of Quality Standards, the Right to Safety and the Right to Avoid Unnecessary Suffering and Pain), “Privacy and Confidentiality” (the Right to Privacy and Confidentiality) and “Redress” (the Right to Complain and the Right to Compensation). The right to information and right to informed consent are recognized in all Croatian laws regulating patients’ rights since 1993 (37).
The right to information is emphasized heavily in PRPA, and patients have the right to information about their health, including the right to second medical opinion, right to information provided in the understandable way, as well as right not to know (13). The right to information was second most often reported violation in our study, which may be related to the advancement of the Croatian health system from a paternalistic to the partner model (38). Future studies are needed to assess whether this is true.
In PRPA (13), the right to shared decision making includes both the right to be informed and the right to consent. A recent study demonstrated that the implementation of informed consent is satisfactory, but identified problems in the informed consent process, such as low quality and understandability of written forms used to obtain consent (37). Moreover, studies from Croatia show that shared decision-making education in medical schools’ curricula often lacks, and this aspect of the non-curriculum may be translated into everyday clinical practice (38). On the other hand, there were only a few cases where we identified potential violations of the Right to Consent, which is most probably the consequence of strict legal rules, as providing treatment without consent is considered both criminal and civil offense in Croatia (13).
The violation of the right to complain was reported in a small number of cases. We believe this reflects the fact there are several instances where patients can file a complaint in Croatia (such as healthcare institutions where the violation possibly occurred (17, 18), Ministry of Health (16), regional committees for protection of patients (13) or health professional chambers (19). The Right to Compensation was identified in just a handful of cases. There are no data available on the number of lawsuits for compensation and possible trends, except for rare cases that gain media attention in Croatia, often following long and strenuous legal proceedings and huge monetary compensations (39).
In order to impact the quality of care, patients’ complaints should be comprehensive and context-specific (40-43). While we categorized the complaints according to the rights outlined in the ECPR, the majority of complaints were actually questions about the healthcare system in Croatia. This contrasts similar research, where the majority of complaints have dealt with actual patients’ rights infringements, such as in Ireland (44). Many questions about the healthcare system as well as infringement of the Right to Information, which was the second most common patient complaint to the CAPR, could point out to low health literacy in Croatia. Health literacy is a broad concept – a set of skills needed to function and understand the healthcare environment (45), ranging from understanding health information to health numeracy (46). Low health literacy seems to be associated with poorer health outcomes (47), and different information about health or healthcare system should be easily accessible to low-level health literacy patients (48). Overall, health literacy in Croatia in hospitalized patients is less than adequate (49). Future studies are needed to explore health literacy in general public, as well as among those seeking help from the CARP, and identify specific characteristics and risk factors for low health literacy and how this may be linked to the understanding of patients’ rights.
Our study showed that the patient complaint system in Croatia is not well organized, as there are no developed standardized procedures for responding to patient complaints, and no defined approaches to the legal protection, promotion, or recognition of patients’ rights, despite different official pathways to submit patients’ complaints. While in other EU countries the relationship between health care professionals and patients is built on confidence and cooperation, gratified with person-centred communication, the Croatian health care system is still built on paternalistic doctor-patient relationship where patients often do not know the names of their healthcare providers (50).
Research into patient complaints is important as it helps identify problems in patient rights and safety. To achieve this, it is necessary to standardize how patient complaints are analysed and interpreted. Although patient complaints provide a unique insight into the problems that occur in the healthcare system, there is no systematic approach to evaluate and analyse these complaints at a central level. The existence of several parallel pathways to report violations of patients’ rights in Croatia does not seem to increase the confidence of patients, but is rather confusing as there are no clear instructions for patients about their rights and the procedures to protect them. The official bodies responsible for the protection of patients’ rights do not collaborate and do not follow protocols. Based on the results of our study, the recommendation for the Ministry of Health, would be the adoption of clear pathway for complaints about health services, such as that of the National Health Service in the UK, which provides detailed instruction on how to complain to the health services, either online, in the waiting room or at the service provider website (51). The patients filing the report can complain only to a single body, either directly to the NHS or the commissioner of services. In this way, health care organizations have to work together to ensure that the person filing the complaint receives an answer (51).