Research Article - Biomedical Research (2017) Volume 28, Issue 4
"The right to privacy" and the patient views in the context of the personal data protection in the field of healthNurdan Kirimlioglu*
Department of History of Medicine and Medical Ethics, Eskisehir Osmangazi University, Turkey
- *Corresponding Author:
- Nurdan Kirimlioglu
Department of History of Medicine and Medical Ethics
Eskisehir Osmangazi University, Turkey
Accepted date: August 01, 2016
Background and Objective: The personal data protection in the field of health has become crucial in the context of the patient confidentiality and the privacy of information. The Personal Data Protection Law of 2016 and the Patient Rights Regulation (PRR) of 1998 are taken as a basis for the personal data retention in the field of health in Turkey. The PRR, which came into force in 1998 and updated in 2014, has combined the rights of the inpatients and the outpatients in a legal text. According to the text, the respect to the patient confidentiality involves ensuring both the privacy of patient information and the privacy of body. This study was carried out to determine the attitudes of patients hospitalized at Eskisehir Osmangazi University Hospital (ESOGU) towards the confidentiality of information related to patients and privacy, which are included in the right to privacy-an important component of patient rights.
Materials and Methods: The data were collected from 517 individuals receiving inpatient treatment at Eskisehir Osmangazi University Hospital. The aim and content of the research were explained to the patients, and volunteering patients were included in the study. Research data were collected through a survey form in face-to-face interviews group, 201 (38.9%) patients were treated in internal clinics and 316 (61.1%) patients in surgical clinics. SPSS 20.0 was used for data analysis. The average age of patients was 52.4 ± 15.7.
Results: 90 % of the patients agree that the retention of the privacy of patient information and patient confidentiality is a right. Patients feel stronger if they have knowledge of their rights and responsibilities when receiving healthcare services.
Patient rights, Privacy, Confidentiality, Ethics, Personal data protection
Private life, in the general sense, is accepted as the secret and hidden sphere of life, where confidentiality is assured and the person wishes to stay alone and prefers to live in his/her internal world. Private life is defined as a state of confidentiality, inaccessibility and unreachability, and as non-intervention in the body and soul, ideas and relationships. What lays the ground for this restriction is the respect for human and human dignity . The right to privacy, involving protection of personal data and demand for solitude without any disturbances, requires protection mainly because of the rapid development of technology .
According to the first paragraph of the Article 8 of the European Convention on Human Rights, "Everyone has the right to respect for his private and family life, his home and his correspondence". The right to respect for private life defined in this provision involves herewith the personal information as well .
The personal data is a controversial and amorphous concept; according to the European Union Directive 95/46/EC published in 1995, the personal data is all the information relating to an identified or identifiable natural person. Briefly, it can be defined as all kinds of identifiable information, belonging to a person. The state of a human in the society and taking part in the universe as a human, transform some values bound to a person into personal data. For example, information like the name, address, illnesses, the marital status, sexual preferences, ethnic origin, political views of a person are all accepted as the personal data .
The health problems that the person is going through, the relationship between the patient and the physician, what the sickness is, the medications that the patient is taking, the applied treatment, the physical features, medical analysis and imaging results of the patient are included in the scope of the right to privacy and its protection. As a matter of principle, these are absolutely inviolable .
In the data protection regulations, information like "the racial or ethnic origin, political views, religious or philosophical beliefs, union membership, health and sex life and all kinds of convictions" of a person are described as sensitive data and as a rule processing these data is banned .
Relationship between personal data protection and confidentiality in the field of health
The personal data protection is based on confidentiality, an old and deep-rooted concept. The confidentiality is a concept forming the basis of the independent and free existence of the person, thereby forms one of the key elements of being an individual . The confidentiality does not only comprise the respect to private and family life, but it also does not mean a dominance or control right over the personal information. The confidentiality right does not only involve being exempt from others interference, but it also involves the obligation to assist a person to lead a private life under some conditions .
The personal data protection in the field of health has become crucial, especially in the context of the patient confidentiality and the privacy of information. Medical information is one of the most sensitive personal data. Patients share information related to their disease to receive a better treatment. In principle, the information is useful for the patient when shared between healthcare providers and systems. Physicians need to access accurate medical information related to individuals in order to diagnose correctly, avoid the repetition of costly and risky tests or develop effective treatment plans in consideration of highly complicated factors. However, in practice, the information is commonly used and accessed by not only physicians but also insurers, employers and laboratories .
The importance of the privacy of health information has been emphasized as a result of the privacy principle in the context of the health care, in the ethical codes of the health profession. Even though the privacy and confidentiality are correlated concepts, it must not be forgotten that there are some qualities that distinguish them from each other. Within this framework, the confidentiality of health information is defined as "A person's authority of control over the cases, in which a person's personal health information is collected, used, stored or transmitted" whereas the privacy is defined as "An aspect of the confidentiality of the health information, focusing on the protection of the reliance between two individuals, who are typically in a close relationship with the patient-physician." Even though both of these concepts have certain differences, it is better to evaluate the information confidentiality as a complement to the privacy, not a substitute for it .
Human is the only being, which is valuable, has its own value and a purpose on its own right [8,9]. Human beings have an essential value [9,10]. All human beings, regardless of whether they are accepted as valuable by all people or one person, have an inherent value. Things with an essential value and inherent value cannot exist without an external basis [11,12]. Human body is the external basis of individuals . Body is not haphazardly related to human life; it is an indispensable condition for living . For us, body is both the natural and the moral/social environment in which we live. Body is where we exist and perish. It is a realm of both freedom and restrictions . An individual’s body is his/her private area, and private life is the most important component of an individual’s area of freedom. Human body with such a special value inevitably has some rights. The confidentiality of information and the privacy of body, which are included in the right to privacy, serve to protect the interests of individuals and their bodies. Privacy is essential to the protection of human honour and autonomy. Privacy is a human right. It is an aspect of personal immunity. Immunity is not only related to human rights and law. It also covers privacy of body and thus entails respect. These are particularly important and valid for patients. For, complicated feelings and concerns that arise in case of illness render it difficult for patients to make decisions and take action. That is why bodily privacy of patients requires extra care and attention.
Personal data protection and patient confidentiality in the field of health in Turkey
The Personal Data Protection Law of 2016  and the Patient Rights Regulation (PRR), which came into force in 1998  and updated in 2014 , are taken as a basis in the field of health in Turkey.
The fourth part of the Patient Rights Regulation, titled "Protection of Patient Rights", deals with confidentiality of information related to patients and protection of bodily privacy under the title of respect for privacy. Article 21 in this part explains as follows the scope of respect for privacy and the right to demand privacy. In this respect, it is required:
• To keep confidential any medical evaluation related to the health condition of patients,
• To protect confidentiality, to the reasonable extent, in examination, diagnosis, treatment and other procedures that require direct contact with patients,
• To let the patient be accompanied by another person in cases where there is no medical disadvantage,
• Not to let the presence of people in the medical intervention who are not directly related to the treatment,
• Not to intervene in personal and family life of the patient unless the nature of disease requires,
• To keep confidential the funding of healthcare costs.
It is clearly indicated that death of a patient does not allow the violation of the right to privacy.
Article 23, the final provision of the fourth part, brings the obligation to keep confidential the information obtained during the provision of healthcare services. The regulation stipulates that information is obtained in a suitable environment where the patient's privacy is protected .
Materials and Methods
Patients’ knowledge and desires as well as their opinions and attitudes towards patient rights are important for the implementation of human rights.
This study was carried out to determine the attitudes of patients hospitalized at Eskisehir Osmangazi University Hospital (ESOGU) towards the confidentiality of information related to patients and privacy, which are included in the right to privacy-an important component of patient rights.
Permission was obtained from the institution and ESOGU Clinical Research Ethics Board before the data were collected. The aim and content of the research were explained to the patients, and volunteering patients were included in the study. Research data were collected through a survey form in face-to-face interviews.
The survey form for patients consisted of three parts.
Part I sought socio-demographic information about patients.
Part II was related to the cause, number and period of stay in the hospital.
Part III, based on the “Patient Rights Regulation”, involved some statements for the purpose of determining patients' attitudes towards patient rights. The following choices were available for each statement: agree, disagree.
In data analysis, arithmetic mean, standard deviation, frequency and percentages were used to describe the participants' replies with regard to research variables, in consideration of measurement level of the variables.
It was considered whether there is a statistical relationship between the demographic characteristics of participants and research variables. Chi-square (χ2) test was used to determine the differences and relationships with regard to variables. This paper presents the significant relationships and differences found as a result of the analyses. The statistical software SPSS 20.0 was used for the analysis of data.
Five hundred seventeen patients hospitalized at Eskisehir Osmangazi University Hospital participated in this study. Among the respondents, 231 (44.7%) patients were female and 286 (55.3%) patients were male. The average age of patients was 52.4 ± 15.7. The descriptive information belonging to the patients is given in Table 1.
|Descriptive characteristics of the patients|
|Clinic where treatment is received||n||%|
|60 and over||192||37.1|
|Primary school degree||211||40.8|
|Secondary school degree||82||15.9|
|Upper secondary sc. degree||92||17.8|
|Area of residence||n||%|
|Number of children||n||%|
|4 and over||122||22.4|
|Number of admissions to hospital||n||%|
|3rd time and over||153||29.6|
|Period of stay in hospital||n||%|
|16 days and over||52||10.1|
|Position in the family||n||%|
Table 1: Descriptive characteristics of the patients.
While 475 (91.9%) patients agreed that they had rights just because of being a patient, 42 (8.1%) patients mentioned the opposite.
Furthermore, 221 (42.7%) patients mentioned they did not know, 296 (57.3%) patients mentioned they knew patient rights.
While 136 (26.3%) patients stated that there was a patient rights unit in the hospital, 381’i (73.7%) patients mentioned the opposite.
Twenty five (4.8%) patients reported that they applied to the patient rights unit for some reason while 492 (95.2%) patients stated that they did not apply to this unit as shown in Table 2.
|Information and Attitudes Regarding Patient Rights||Yes||No|
|Do you know that patients have rights arising from being a patient?||475 (91.9%)||42 (8.1%)|
|Do you know the current patient rights?||296 (57.3%)||221 (42.7%)|
|Do you know that there is a patient rights unit at the hospital?||136 (26.3%)||381 (73.7%)|
|Have you ever consulted to the patient rights unit anyhow?||25 (4.8%)||492 (95.2%)|
Table 2: Patients’ knowledge of and attitudes towards patient rights.
The views of the patients concerning the right to privacy in the field of health are given in Table 3.
|Patients’ viewpoints about privacy||Agree||Disagree|
|Patients have the right to demand the of privacy during medical care and treatment.||497 (96.1%)||20 (3.9%)|
|Patients have the right to demand the confidentiality of information about related condition, diagnosis, prognosis treatment as well as all other personal information.||457 (88.4%)||60 (11.6%)|
|Patients have the right to demand their right to be supported by their members during medical care and treatment.||488 (94.3%)||29 (5.7%)|
Table 3: Patients’ viewpoints about privacy in the field of health.
In favour of the patients aged 60 years and older, there is a statistically significant relationship between the age brackets of the patients and knowing the rights arising from being a patient. More patients aged 60 years and older know the rights arising from being a patient, than the patients of other age brackets. (χ2=11.140, df=5, p=0.049, p<0.05).
There is a statistically significant relationship between patients’ marital status and knowledge of the rights arising from being a patient. The rate of knowing patient rights is higher in married patients than others. (χ2=8.021, df=2, p=0.018, p<0.05).
There is a statistically significant relationship between patients’ sex and knowledge of current patient rights. However, male patients know patient rights at a higher rate than female patients. (χ2=9.455, df=2, p=0.009, p<0.05).
There is not a statistically significant relationship between patients’ age group and knowledge of current patient rights. However, the results suggest that the rate of knowing patient rights is the highest in the group of patients aged 30-39 and that the frequency of knowing patient rights is the lowest in the group of patients aged over 40.
In favour of the housewives, there is a statistically significant difference between the occupations of the patients and the agreement to demand the right to protection of their confidentiality, when treatment is applied. Patients who are housewives agree more with the right to protection of their confidentiality than the other patients. (χ2=20.150, df=5, p=0.001, p<0.05).
There is a statistically significant relationship between the patients who know the rights arising from being a patient and who know the current patient rights. Those who know the rights arising from being a patient also know the current patient rights as well. (χ2=20.892, df=20, p=0.000, p<0.05).
There is a statistically significant difference between the patients who know the rights arising from being a patient and who know the current patient rights; and the agreement with the right to demand the confidentiality of information about the health-related condition, diagnosis, prognosis and treatment as well as all other personal information. The test results concerning these differences are given in Table 4.
|Knowing the patient rights||Patient’s agreement with the right to demand for the protection of all the information|
|Knowing the rights arising from being a patient||χ2=9.479 df=1 p=0.002*
|Knowing the current patient rights||χ2=6.738 df=1 p=0.009*
Table 4: Patient’s agreement with demanding protection of all their information with regard to knowing the rights arising from being a patient and the current patient rights.
The patients who know the rights arising from being a patient and the patients who do not know the current patient rights agree more with the right to demand the confidentiality of information about health- related condition, diagnosis, prognosis and treatment as well as all other personal information as shown in Table 4.
In favour of the male patients, there is a statistically significant difference between the patient’s sexes; and the agreement with the right to demand the protection of their confidentiality during medical care and treatment and knowing the present patient rights. The male patients know more about the current patient rights and agree more with the protection of their confidentiality, than the female patients as shown in Table 5.
|Right to demand the protection of the confidentiality||Knowing the current patient rights|
|χ2=13.253, df=1, p=0.000*, χ2=6.498, df=1, p=0.011*,
Table 5: Knowing the current patient rights and agreement with demanding the protection of their confidentiality with regard to patients' sexes.
There is a statistically significant relationship between the patients who agree with demanding respect for their right to be supported by their family members during medical care and treatment; and the right to demand the confidentiality of information about health- related condition, diagnosis, prognosis and treatment as well as all other personal information and the right to demand the protection of their confidentiality during medical care and treatment. Those who agree with demanding respect for their right to be supported by their family members during medical care and treatment, also agree with the right to private protection of their confidentiality and all their information as shown in Table 6.
|Patients have the right to demand respect for their right to be supported by their family members||Patients have the right to demand protection of privacy of all their information||Patients have the right to demand protection of their confidentiality|
|χ2=20.756, df=1, p=0.000*, χ2=33.943, df=20, p=0.000*, *p<0.05|
Table 6: Patients have the right to demand respect for their right to be supported by their family members during medical care and treatment with regard to demand the protection of privacy of all their information and confidentiality.
According to the Turkish Health Statistics Yearbook 2012, the population rate of people aged 60 and over is 11% in Turkey and the population rate of people aged 65 and over is 9.8% in Eskisehir . In our study, the rate of patients aged 60 and over was 37.1%, which is quite higher than the rate in Turkey and Eskisehir. The rate of aged population is high probably because ESOGU Hospital is serving as a regional hospital.
In 2013, the rate of male population was 50.2% and that of female population was 49.8% in Turkey. These data suggest that male and female population are almost equal to each other . In the present study, the rates of male and female participants are almost close to each other, which is a finding compatible with the overall proportion in Turkey.
While the rate of illiterate population was 5% in Turkey according to 2012 data, the illiteracy rate was 10.8% among the respondents of this study. This rate is higher than the overall rate in Turkey. The rate of holding primary school degree is 28% and 40.9% and secondary school degree is 5% and 15.9% in Turkey and among the participants of our study, respectively. The rates in this study are above relevant rates in Turkey. The rate of participants holding an upper secondary school degree is lower than the overall rate in Turkey, i.e. 17.8% vs. 22%. In Turkey, the rates of holding undergraduate and graduate (master’s/doctorate) degrees are respectively 11% and 1% while these rates were respectively 12% and 2.7% in the present study. These rates are compatible with the overall rates in Turkey.
The purpose of enabling patients to be informed about patient rights is to inform patients and their families about the diagnosis, treatment and prognosis, to ensure that patients receive the medical care they deserve, to provide patients with alternatives about medical care and hence to ensure that they can act independently . Knowledge of patients about patient rights is an important factor in increasing their satisfaction of healthcare services and hence improving the quality of healthcare services .
The majority of patients in Krzych and Ratajczyk’s study , 36.6% patients in Yaghobian et al. study , 15 (9%) patients in Kuzu et al. study , 27.6% of the patients in Gunay et al. study , over half of the patients in Eksen et al. study , 19.7% of the patients in Mira et al. study , 21.9% of the patients in Alghanim’s study  reported that they knew patient rights.
In a study on a awareness of patients of their rights in Jahrom, Iran, only 8.14% of patients were aware of their rights, with the greatest awareness pertaining to the patients with higher education .
In Kagoya et al. study, the majority (81.5%) of patients reported that they never heard about the regulation on patient rights in their country, 55.5% of them mentioned that they did not know their rights as a patient , Merakou et al. found that the majority of patients (84.3%) , in Almoajel's study, the 74.8% of the patients did not know the regulation on patient rights in their country .
In the present study, the fact that 57.3% of patients reported to know patient rights is compatible with the results of Krzych and Ratajczyk’s study.
In the hospital where this research was conducted, main provisions of the patient rights regulation are available on notice boards in some parts of the hospital. It is noteworthy that only 57.3% of the patients reported that they knew the patient rights.
With regard to the level of knowledge of patient rights, Tanriverdi found no difference between men and women , Gunay et al.  found that a higher rate of men than women knew, and Eksen et al. found that a higher rate of women than men knew the patient rights .
In the present study, there is a statistically significant difference between men and women with regard to knowing the current patient rights. The rate of male patients that reported to know patient rights is higher than the rate of female patients. This is compatible with the relevant finding of Gunay, Nacar, Horoz et al.
Tanriverdi found no difference between age groups with regard to the level of awareness.  The rate of knowing patient rights is higher among younger patients in Gunay et al.  and among patients aged 20-29 in Eksen et al. .
In the present study, there is not a statistically significant difference between age groups with regard to knowing the current patient rights. However, the results indicate that patient rights are best known by patients aged 30-39, and that the rate of not knowing patient rights is the highest in the group of patients aged 40 and over. This finding supports the findings of Tanriverdi’s study.
No statistically significant relationship was found between marital statuses and knowing patient rights in Yilmaz’s study  and between marital status and patient rights knowledge scores of patients in Ozer, Ozlu and Saritas’s study .
In the present study, there is a statistically significant relationship between marital status of the respondents and knowing patient rights. The rate of knowing patient rights is higher among married patients than others. This finding does not support the results of above-mentioned studies.
Unsal et al.  found that 35.2% of patients were aware that there was a patient rights unit in the hospital. Ozturk et al. reported that the number of patients knowing that there was a patient right unit is higher in the state hospital than in the university hospital . In Merakou et al. study 44.4% of the patients mentioned that there was a need for a board or an expert for better implementation of patient rights in hospitals .
The fact that 136 (26.3%) respondents reported to know the presence of a patient rights unit in the hospital does not support the findings of above studies. It is considered an indicator of lack of knowledge about patient rights that only one fourth of the patients knew the presence of patient rights units established to eliminate the problems, improve the quality of healthcare services, offer healthcare services in consideration of human dignity and avoid any possible violations of patient rights.
Everyone needs some sort of privacy, for his or her physical, mental, emotional and spiritual well-being. Thus, when patients are admitted to a ward or unit, or even when they are being cared for by a health professional in their own home, it is expected that their privacy will be respected and protected. Respecting privacy is crucial as part and parcel of holistic care and meeting individual needs. It gives dignity to patients and creates a climate of confidence. It allows patients to express themselves and thereby participate freely and actively in their own care. Such an environment undoubtedly creates for patients a conductive climate for a feeling of physical and mental well-being. This should help early recovery from illness and effect early discharge to their home.
When a patient is being cared for in a hospital, respecting privacy can come in many forms. This may involve: the right to enjoy one’s property; the right to protect one’s medical and personal information as confidential; the right to expect treatment with dignity during intimate care; and the right to control one’s personal space and territory .
Approximately all the patients who have taken part in Woogara's study  and the 80.3% of the patients in Almoajel's study were like-minded on the importance of the respect to the confidentiality . The respect to confidentiality is expressed by the 64.8% of the participants in the study of Unsal et al.  and 34.8% of the patients in the study of Yaghobian et al.  The patients' agreement with the statement "measures must be taken in order for the protection of the patient confidentiality" is found to be high (4.09) in participation level and close to agree strongly.
In our studies, it is evaluated that the agreement of 497 (96.1%) of the patients with the statement "the patients have the right to demand the protection of their confidentiality during medical care and treatment." shows similarity with the studies of Woogara, Almoajel, and Alghanim.
Physicians and other healthcare professionals have easy access to any sort of information and documents related to bodily and mental health of patients during medical interventions required for the healing of patients. Such information and documents are private and should not be disclosed anytime and anywhere without the knowledge of patients or their families .
The right to protect one’s medical and personal information as confidential is crucial in a clinical setting. Information privacy allows patients the right to control information about them, even after divulging it to carers. This component acknowledges the critical value of patients being able to step forward and participate in their own care in the full knowledge that any information about themselves and their identity released to health professionals will be protected .
In Yaghobian et al. study 33.6% of the patients , in Unsal et al. study 53.8% of the patients  and in Merakou et al. study 65.8% of the patients  stated that they knew they have the right to demand the confidentiality of their information. In Alghanim’s study, the score of agreement with the statement that “information related to patients should be kept confidential” is quite high (4.50) and close to strong agreement .
In the present study, 557 (88.4%) patients agreed with the statement that “patients have the right to demand the confidentiality of all information about health-related condition, diagnosis, prognosis and treatment as well as all other personal information”, which is a finding compatible with Alghanim’s results. Approximately 90% of the respondents support the right to confidentiality of information related to patients.
In order to obtain positive outcomes from clinical processes, there is a need to consider viewpoints of patients. The participation and contribution of family members are also important for the evaluation of patients .
Six hundered eighty-one (92.9%) patients in Gunay et al.  and 82.9% of the patients in Ozer et al.  mentioned that patients have the right to demand the presence of a family member during medical examination.
In the present study, 488 (94.4%) patients agreed with the statement that “patients have the right to demand respect for their right to be supported by their family members during medical care and treatment”, which is a finding compatible with the results of Gunay et al. and shows that patients commonly agree with this right.
Although almost all patients stated that they have rights arising from being a patient, only 57.3% of them mentioned they that have knowledge of these rights.
A higher rate of male patients than female patients have knowledge of patient rights. A higher rate of married patients than single patients have knowledge of patient rights.
The rate of knowing patient rights are the highest in the group of patients aged 30-39.
It is considered an indicator of lack of knowledge about patient rights that only one fourth of the patients knew the presence of patient rights units, which are established to eliminate the problems, improve the quality of healthcare services, offer healthcare services compatible with human dignity and avoid any possible violations of patient rights.
Ninety percent of the patients agree that the retention of the privacy of patient information and patient confidentiality is a right.
Patients commonly agree with the right to be supported by their family members when receiving medical care and treatment. The patients who reported that they have rights arising from being a patient agree more with this right compared to the others.
The true owner of the individual health data is the person. With regard to being the institutions or the person (physician), where an individual gets health care, does not give them the right to own the personal health data. The institutions and the physicians who directly serve health care are primarily responsible for the protection of the information with regard to person's rights.
Patients feel stronger when they have knowledge of their rights and responsibilities when receiving healthcare services. Awareness of patient rights not only avoids possible problems but also contributes to the solution of problems and improvement of quality in healthcare services. That is why information meetings may be held to raise patients’ awareness about patient rights in the context of health communication.
Visiting and staying in a hospital is a complicated situation for a patient and likely to cause anxiety. This may make it difficult for patients to comprehend their rights and take action that is why hospitals are required to prepare a leaflet concerning the rights of patients and their families, which are presented to patients and their families when they are admitted to the hospital. This information should also be available on notice boards in various parts of the hospital. The content should be prepared in consideration of the age, background and language of patients.
Conflicts of Interest
The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper.
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