Awareness and Observance of Patient Rights from the Perspective of Iranian Patients: A Systematic Review and Meta-Analysis.

BACKGROUND: Recipients of healthcare services have rights, which must be acknowledged and protected. Such rights include observance of acceptable patient physical, mental, spiritual, and social needs guided by commonly accepted rules and regulations. The objective of this study was to conduct a systematic review and meta-analysis of awareness rates and observance of patient rights in Iran from the perspective of the patient.
METHODS: In this study, various references such as Medline (PubMed), Scopus, Scientific Information Database (SID), Google scholar, Magiran, and IranMedex were searched (from August to December 2015). Heterogeneity was assessed using the Q statistic. English and Persian search keywords and combinations included terms such as "patient bill of rights, patient rights, Iranian patient bill of rights, and Persian patient rights." A meta-analysis of the primary search sources was accomplished using STATA (version 11.0).
RESULTS: Initial review included 20 articles of which 12 assessed observance rates of patient rights and three described service awareness rates of recipients concerning their personal rights. Five articles covered both topics and had an estimated 54.2% coverage based on the results of meta-analysis and the random-effects model with the heterogeneity.
CONCLUSION: An Observance rate of patient bills of rights was considered somewhat adequate. However, contradictions in findings noted in this study suggest deficiencies do exist and need to be resolved. There appears a need to better describe and increase awareness rates of healthcare services by patients concerning their own bill of rights.

What’s Known

Respecting patients’ rights is an essential component of health care. Patients’ rights are universal values that must be respected.

What’s New

We found that the observance rate of patients’ bill of rights was adequate. Assessment of patients’ views about the observance of their rights and obtaining feedback from them is an integral component of service quality and ensures healthcare ethics. Improvement in patients’ perceptions regarding their rights is necessary.

Introduction

One of the major attributes, which is the source of many virtues, is to feel a sense of responsibility towards others’ rights and to serve mankind is that each educated person should have it. In the field of health and treatment, caring and promoting the preservation of human life have special importance to related personnel so the patients’ rights become more important.[1]

Healthcare patients have rights, which must be acknowledged and protected. Patient rights include observance of acceptable physical, mental, spiritual, and social needs described by current national rules and regulations. Healthcare providers are responsible for establishing and maintaining patients’ rights.[2] The healthcare systems in many countries have compiled a patient bill of rights, which are important responsibilities of all levels of management. Hospitals authorities are charged to share its bill of rights with their patients and assure that patients understand their rights.[3] A declaration of patient rights was first published in 1948 by the Iranian national union of nursing in response to patient expectations and satisfaction with care, legal principles, ethical responsibilities, maintaining the confidentiality of information, and preserving the respect and dignity of the patient, including admittance without discriminations.[4,5] Compiling a viable patient bill of rights was a strong starting; however, additional work is needed for involved parties to provide universal application of patient rights. In addition, it is necessary to establish a correct definition for the relationship between healthcare service providers and patients. This must include patients’ opinion concerning their rights as well as affective factors, such as professional position and environmental differences. These have a direct effect on policy makers to create, promote, and monitor their programs to improve observance conditions of patients’ rights.[6] Rights of patients can be violated from the moment of admittance. This can affect the course of their stays. In order to achieve better the intent of patient bill of rights, it must be assumed that such rights are fundamental in progressive societies. This requires both active research and education of the population.[7]

In recent years, there have been significant efforts made worldwide to establish and maintain patient rights. This is directly relatable to improved overall value and respect of all persons, which is best known as human rights. The preamble of the United Nations states “whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family, it is essential if man is not to be compelled to have recourse, as a last resort, to rebellion against tyranny and oppression, that human rights should be protected by the rule of law”.[8] Human rights are based on the concept that all people deserve respect. Therefore, this includes healthcare patients.[9] Today, patients must be active participants in their own care, rather than just being passive recipients of services. This requires enhanced awareness by both patients and practitioners. Modern healthcare can best be provided when there is active cooperation between the two groups.[10]

In many countries, patient rights have been standardized legally and involve a common understanding of mutual respect. Healthcare providers must follow these standards and provide services of the highest possible moral and ethical level.[11] The current Iranian patient bill of rights is comprised of five general topical areas, subdivided into 37 sections supported by an encompassing mission statement. The latest version was approved in November 2009 by the Ministry of Health. Topical areas include: 1) the right of receiving desirable health services; 2) the right of receiving information desirably and sufficiently; 3) the right of choice and freely decision-making of patient in receiving health services; 4) the right of respecting the privacy of patient and observance of confidentiality principle; and 5) the right of access to an efficient system of handling the complains.[12] The aim of this structured study was to review the awareness rate and observance of patient rights from the perspective of medical healthcare service recipients.

Materials and Methods

Various references such as Medline (PubMed), Scopus, Scientific Information Database (SID), Google scholar, Magiran, and IranMedex were searched (from August to December 2015). English and Persian search keywords and combinations included terms such as “patient bill of rights, patient rights, Iranian patient bill of rights, and Persian patient rights.” Additional published studies obtained from other sources were also reviewed.

Study Selection Criteria

The complete search identified texts or abstract of all appropriate articles and the corresponding reports were obtained. Repetitive citations were deleted by examining document titles of documents, author names, publication year, journal title, and journal volume and issue number. Surviving articles underwent an evaluation of its link’s quality using a STROBE checklist (strengthening the reporting of observational studies in epidemiology). The STROBE initiative developed recommendations on what should be included in an accurate and complete report of an observational study.[13] This checklist included 43 various components and evaluated different aspects of research methodology including sampling method, measurement of variance, statistical analysis, and study objectives. The minimum and maximum obtainable points were set between 40 and 45 with one point for each item. Articles awarded with at least 40 points were included in the study. The inputs of the studied articles were extracted in the form of the first author’s name, study location, publication year, objective(s) of the study, sample size, sampling method, evaluation scale(s) and instruments used, groups and gender, reviewed awareness rated, and observation of patient rights.

Study Inclusion Criteria

English and Persian articles, which reviewed the awareness rate of medical and health service recipients concerning patient rights, the observance rate of patients’ rights from the perspective of patients, and both perspectives were included after evaluation and having achieved the minimum point score.

Study Exclusion Criteria

The studies, which achieved less than 40 checklist quality points, and those who reviewed populations, which excluded service recipients or referred to issues excepting awareness of patients’ rights and observance rate of patients’ rights were not included in the study. The standard error of an observed rate of patient’s right in each study was calculated using a two-phase distribution formula. Finally, the heterogeneity standard among studies was determined by using Cochran’s statistic (Q). The random-effects model was used for assessing the observance rate of patients’ rights in Iran based on the heterogeneity’s results. Spotted assessment of the observed rate of patients’ rights was also calculated in accumulation diagrams (forest plots) with a confidence interval of 95%, where the size of the square indicates the weight of each study and the lines on its both sides indicate a confidence interval of 95%. A meta-analysis of the primary search sources was accomplished using Stata software version 11.0.

Results

In the initial part of this study, 204 articles produced by Iranian researchers both inside and outside of Iran were identified using various databases searches. Eventually, 184 articles were eliminated after a review of the article title and/or abstract and full text. Eventually, 20 articles were included in the study (figure 1). Each had the required study conditions based on a quality evaluation checklist and reviewed using the inclusion and exclusion criteria. Searching in databases was done with two raters (agreement coefficient=90%) and disagreed searches were assessed by the third author.

Figure 1

Flow of information through the different phases of a systematic review.

Of the 20 included articles, 12 articles reviewed the observance rate of patient’s rights.[2,6,9,10,12,14-20] Three articles reviewed awareness rates among service recipients concerning patient bills of rights from the perspective of patients or service recipients.[3,21,22] Five articles reviewed both subjects.[5,7,23-25]

The average age of the studied groups was between 21 to 53.11 years. All the studies were in cross-sectional type (descriptive-analytical) and conducted from August to December 2015. In 13 studies, 46.76% of the patients were men. Seven studies did not identify the gender of participants. In most studies, domains such as receiving confidential services and without discrimination, patient’s access right and statement of medicinal error, respecting the patient’s privacy and confidentiality principle, desirable attention and treatment, recognition of medical group and participation in educational and research program were reviewed. Rates were variable from 19% in the study of Bateni[15] to 78.3% in the study of Sarkheil[19] and Arab[9] reported an observance rate of patient bills of rights using three categories, 13.8%=good, 82.9%=average and 3.3%=poor.

The observance rate of patient rights was average in a study by Amini,[5] while it was considered weak by Ansari.[14] In five studies, the domain of patient respect observed was reported as an average of 58.16% and varied from 16.63 to 95.5. In six studies, the domain of selection right and freedom in decision-making was reported as an average of 39.5% and varied from 8.1 to 72.44. In four studies, the domain of handling system of patient’s complaints was reported as an average of 39.5%, which varied from 13.2 % to 66.7%. In five studies, the average observance of patient privacy was determined to be 38.27% and varied from 10/6 to 80.27%. In three studies, presenting information to patient had an average of 34.4% with a variance of 14.7 to 71.2. In three other studies, average patient was reported at 75.5% with a variance of 43.8 to 82.89%.

Among the included studies in the research, nine reported an observance rate of patient rights (table 1 and figure 2).

Table 1

Main characteristics of all studies included in the meta-analysis

Row	First author	Publication year	P value	Sample size	Frequency of patient’s rights observance	Strobe score
1	Mohamad Vakili	2012	<0.001	200	63.30	42
2	Abolghasem Amini	2013	<0.001	382	33.30	42
3	Hamid Sarkheil	2013	<0.001	300	78.10	40
4	Farhang Babamahmoodi	2011	<0.001	200	14.59	40
5	Kokab Basiri Moghadam	2011	<0.001	311	69.10	42
6	Hasan Jouzi	2010	<0.001	160	45	41
7	Khorshid Vaskooei	2009	<0.001	700	53.20	43
8	Mahmod Nekoeimoghaddam	2013	<0.001	384	52.60	42
9	Fatemeh Rangrazjedi	2005	<0.001	320	78.40	43
Total*
		Average	<0.001	295	54.2 (40.1-68.3)
		Hetrogenity		Q	5,828

Total assessment of patient’s rights observance using random-effects model in Iran’s hospitals

Figure 2

Observance rate of patient rights at 54.2%, considering heterogeneity based on random-effects model with a certainty of 95% (68.3-40.1) (Q=582.8, P=0.001).

All studies with an assessment of awareness, the rate of recipient services concerning a patient bill of rights was defined as weak, average and good. In six studies, patient awareness rates concerning patient bill of rights of 58.05% was considered as weak, while 17.9% were average and 24.01% were rated as being good. Awareness rates of good level studies varied from 5.8 to 76.8.[9,23] The level of weak awareness varied from 81.8 for Aghili study[10] to 5.6 for Basiri Moghadam.[17]

Studies did not address domains of patient bills of rights evenly or in the same manner. Some studies posed a single patient bill of rights question, while others divided it to four or as many components. Some studies declared the results of their research qualitatively and some studies reported research results as percentages while others used terms such as average, good or poor. Some studies defined their results using a scale from zero to ten.

Discussion

Patients’ rights vary in different countries and often depending upon prevailing cultural and social norms. Moreover, the most important ethical issue in a hospital is patients’ rights that should be more considered by physicians, nurses and all personnel in the hospital. Based on the results of meta-analysis and random-effects model, awareness rates were assessed at 54.2%. Kuzu’s study showed that 92% of patients were not aware of their patient bill of rights. 1.8% had good awareness and 7.2% had only an average awareness. 92% of the patients had fair access to the services. 95.2% of patients declared that they had not received necessary information concerning their patient bill of rights either in writing or verbally. In 75.3% of cases, the medical staff did not introduce themselves to the patient.[26] Alyah’s study indicated patient awareness rate about their own rights was at 25.2%.[27] Merakou reported patient awareness rates concerning patient bills of rights was 16%, where 84% of the patients were not aware of their rights.[28] Woogara announced that 60% of patients were not aware of their rights.[29] In Fotaki’s study, patient awareness of their bill of rights was low or about not having any awareness.[30] These differences could be due to the positive effect of educational programs performed in recent years. Yousuf et al. concluded that 90% of patients were not aware of their rights. 85% were aware of their illness and treatment methods used. 65% of patients gained medical information during their hospitalization period and 92% of patients in surgery and dialysis units were satisfied with their physicians.[31] These values are greater than those reported in this study. The reason for these differences could be due to the negligence of service providers and lack of information sharing with patients and healthcare providers concerning the patient bills of rights. Observance rates for patient bills of right in eight studies was reported as 51.17% and the domain of patient respect observance in five studies was reported as 58.16%. In six studies, the domain of the right of choice and free decision-making was measured as 39.5%. In comparison with the obtained results, a study in Turkey by Hakan et al. on patients’ awareness about the different domains of patient’s rights showed their rights to access medical facilities and case file information was 90%, the right of using medical facilities was 60.8% and the right for using medical services by patients was set at 24.7%.[32]

Health technician’s, especially medical team should be informed about respecting patients’ rights more in relation to informing them about their rights to choose and decide on which the ideal situation is. Generally, the studies in this field indicated similar views (physicians, nurses, and patients) concerning patients’ rights.[4] Concerning the health service technicians’ and recipients’ awareness of the patients’ rights charter, Bateni et al. examined the patients’ awareness of their rights in the fourth quarter of 2006 in eight training hospitals in Isfahan. The findings of this cross-sectional and descriptive study conducted on 385 hospitalized patients suggested that more than 50 percent of the patients were not aware of their rights. In addition, according to the researchers’ findings, there was a statistical significant relation between patients’ awareness of their rights and their education level, namely patients with higher education levels were more aware of their rights. Consequently, to improve awareness of patients’ rights, it is important to prepare facilities for training and informing patients too.[15]

In the study carried out by Al Bishi, he was concerned with this concept in a multidimensional way in Saudi Arabia, exploring the patients’, physicians’, and nurses’ lived experiences with patients’ rights. He found that meeting the patients’ caring needs is the core concept for the meaning of patients’ rights in Saudi Arabia. He also found the lack of knowledge about the rights, lack of standard of practice among the hospitals, and the impact of service pressure and subsequent lack of holistic care are barriers to patients’ rights practice in Saudi Arabia.[33]

Respecting patients’ rights is an essential component in healthcare. Passing a regulation is not a guarantee for the protection of patients’ rights.[34] Healthcare professionals can provide care based on patients’ rights and their knowledge of patients’ rights needs to be evaluated. Educational programs, leaflets, booklets, and posters can be helpful in this regard. In addition, professional organizations and the Ministry of Health need to be more sensitive to this issue.[35,36]

Implementation of patients’ rights should not be something that restricts the practice of medicine. Rather, it can both contribute to the improvement of healthcare practices and achieve an equal distribution of responsibility between the patient, physician, and nurse. Patients’ rights cannot simply be observed according to a patients’ bill of rights or individual actions of nurses and physicians. It is a social concept that requires the full intention and commitment of every country, as well as a concerted international approach, for without this, no major system can continue to function in our global world. Healthcare policy makers and managers have a duty to listen to the voices of those who are maintaining and receiving these rights to be able to find realistic ways of promoting and protecting them.[37-39]

Hadadian Jazi performed a study of obstacles for a proper operation of patient bills of rights in Iran and identified a lack of: 1) suitable awareness among patients, nurses, physicians, and students; 2) executive guarantee of patient bills of rights in Iran, nursing work pressure and lack of staff, educational hospitals; 3) awareness of rules and legal orders; 4) enough experience of educating trainers about moral and legal issues; and 5) facilities, lack of adequate staff and undesirable physical workplace and substandard hospitals.[40] Studies imply that problems associated with patient rights are of critical importance. Much of the patient bill of rights research has occurred since 2003 in Iran and was compiled by the national Ministry of Health. Medical universities were informed; however, this study revealed that patient awareness as to their bill of rights and its observance rate were not adequate and improvement was needed. In order to achieve the desired objectives of the patient bill of rights program, additional attention is needed and should include essential topics such as service provider training, including physicians, nurses and other medical and administrative staff in hospital through seminars, conferences, regular and specialized educational programs and retraining. Education of the public through the use of mass and local media sources and other educational methods, including publication and distribution of brochures, texts, posters and banners.

Conclusion

Research efforts have reviewed central issues relating to patient bill of rights in different geographical areas; however, they did not elaborate specifically on the five domains in the Iranian patient bill of rights including the right of 1) receiving desired services; 2) receiving sufficient and timely information; 3) choice with patients being free to decide which health services they need/want; 4) respect for patient privacy and observance of confidentiality principles; and 5) access to an efficient system of handling complaints. Attention to these concerns should be made in future research projects. Contradictions in the findings of this study strongly suggest that weaknesses must be addressed and resolved properly.