A disease, in particular a serious one, is a very difficult experience in itself. On the top of it, however, comes the experience of quite specific surveillance machinery. In the health protection system the patient is only a small cog. A person undergoing treatment usually does not have enough qualifications to assess his or her situation, so they must submit themselves to medical staff. The doctor has a natural advantage in the form of the knowledge, and additionally, he or she gains access to sometimes very intimate or embarrassing information. The dependence of the patient is most clearly visible when he or she is taken away from his or her environment and lands in a total institution – the hospital, where he is subjected to a meticulous inspection and has to observe certain orders, prohibitions or regulations.
Owing to the development of human rights and patient's rights, in this clash with the system an individual is not entirely left alone. He or she is entitled to make decisions concerning his or her body and the treatment, or access to information. Nevertheless, we are far away from solving a long list of problems. What is more, along with the development of modern systems of medical information management, challenges for the patient's autonomy uncover their new face.
The information on health condition is of a special nature – it concerns our corporeality and weakness, which are usually beyond our control. Their disclosure may pose a risk of serious damages.
The information on health condition is of a special nature – it concerns our corporeality and weakness, which usually are beyond our control. Their disclosure may pose a risk of serious damages. Medical data secrecy is of a great importance, with respect not only to the need of privacy protection, but also the relationships of trust between patients and medical staff, or a threat of discrimination. Owing to informatisation, our data dispersed in dozens of files may be combined into a very detailed profile. Such a set of integrated information has a rational, calculable market value and is very much sought-after by employers or insurance companies. Therefore, creating enormous databases carries a large risk and results in a situation where the medical sector is particularly vulnerable to leaks and abuses of many types.
That risk, however, is to be profitable for us: we often hear that the informatisation of the health protection system will result in an improvement of the quality of medical services: it will be faster, easier, and most of all, with a benefit to the treatment process. Indeed, as in other spheres of life, also in this case we can expect that it will be more convenient. Nevertheless, benefits from the point of view of patients' health may be a lot more elusive than it would seem. In the course of treatment many problems arise, not because of a lack of access to information, but difficulties in their selection and appropriate application in a given situation, especially that the time devoted for a patient is very limited. In this context, it is crucial to establish the proper contact with the doctor and build a relationship of trust. Implementing more information techniques is not an answer to those challenges. Quite the contrary, an increase in anonymousness and formalism of relations may make them even more serious.
New forms of integrating information are not the result of a concern about health, but a tool for gaining economic efficiency.
New forms of integrating information are not the result of a concern about health, but a tool for gaining economic efficiency. Collecting, selecting and using information about a patient may make it possible to efficiently manage the health protection system and ensure control over the flow of financial resources. This is the basic factor affecting the increase of surveillance in the sphere of medicine.
Obviously, as in many other cases, this surveillance may have a positive side to it. Information is the basis of effective diagnostics and a long-term planning. Its critical significance may emerge in the case of an epidemiological threat. However, an uncontrolled integration and flow of medical information all in all may bring more damages than profits. That is why pursuing its health policy, the state must create conditions in which various values are respected: not only the protection of public health and efficient management, but also dignity, autonomy and privacy of patients. This has an enormous practical significance. Those concentrated on the fight for health and life (their own, or of their friends or relatives) are particularly vulnerable to violations of their other rights.
At the Panoptykon Foundation we try to diagnose challenges related with surveillance in the domain of health protection. We initiate a public debate concerning the integration of medical databases or the use of video monitoring in hospitals. So far, we have intervened in the case of obligatory gynaecological examinations and the legal framework for digitalization of healthcare. We place great emphasis on ascertaining that the developed solutions account for the right to health protection and create real guarantees for respecting the autonomy of patients.