An evaluation of family health-care information system in the context of privacy and surveillance

Developments in information technologies since the last fifty years have deeply affected the societies in a way that the ever increasing and widespread usage of computers and internet technologies were irreversibly changing the everyday life. Expansion in the usage of information technologies by both the citizens as well as the governmental institutions brought about some concerns and arguments related to the privacy and surveillance issues. On the one side of this argument, information technologies are thought to bring more freedom; on the other side, it is claimed that they give rise to surveillance especially to dataveillance. The main focus of this study is based on the relationship between the violation of the right of privacy, privacy concerns and surveillance practices in Turkey in the context of Family Health Care Information System (FHCIS) which was in operation since 2011. FHCIS is a system where healthcare professionals such as doctors, nurses or midwifes enter/register detailed personal information on and related to national Id number, drinking and smoking habits, received medications and medical treatments, medical history of the applicant, lab test results, venereal disease background, questions related to their sex life, criminal status, etc. Registration process is completed when the data that refers to a certain individual is completed and send to Health Ministry servers within two hours. Although the FHCIS has numerous advantages for family practitioners such as easily remembering the patients and reaching out their medical and medication history, it also means, by sharing those personal information with the Ministry, that to open up them to a sort of surveillance. In this respect, despite some national and international regulation on the protection of privacy, studying the whole process from a sociological perspective in terms of surveillance and the right of privacy is very much needed. The main aim of this research is to find out whether this new system- the primary care system-, because of its electronic nature, means any sort of surveillance practices. In order to do so, it is important to understand and examine the structure of FHCIS, the kind of questions that it consisted of and their contexts, and finally to discuss its relationship with privacy and surveillance issues. Since the wide range of question areas, it was thought that it was important to reveal/establish its connection with bio-politics in terms of patient-doctor and patient-doctor-state relations. When the concept of privacy is defined as the feelings, thoughts and behaviors that people prevent to reveal or limits them in the public space, the application of FHCIS becomes controversial in terms of "data privacy" as much as privacy. The program, used in primary healthcare system, also inholds the components of data surveillance since it does not only monitor and record but also reconcile personal information with other confidential information about the same person. The fact that the gathered big data -information- is shared instantly with the Ministry of Health is the exact point of the questioning of privacy and surveillance in this research. Related research questions included; how these practices are being perceived by the healthcare professionals, whether this can be discussed in terms of its contribution both towards surveillance, possible violations of privacy as well as bio-politics of the state which is based on "knowing" and "managing" the personal information. The main aim of this research is, in the context of surveillance and privacy, to discuss whether the FHCIS applications can be read and understood in terms of surveillance practices. In addition, it is aimed at collecting information about the process of personal data gathering, recording process and the sending process to the main servers of the Ministry of Health. During the research it has been observed that ordinary citizens neither have any way of control nor have consent on health data. Because they, as subjects of this surveillance, were not aware of the data collection process. During the examination of the kind of personal information collected, it was ascertained that a considerable amount of data were not directly related to health issues. This can be read as a threat to personal rights. Research is designed as a qualitative study from a sociological perspective that included twenty-five family practitioners, ten midwifes and one FHCIS specialist who work and use the system in city centre of Aydın/Turkey.