Towards Patient Empowerment - Can the Patient Really Decide?

Abstract

Throughout the modern world, healthcare is in a crisis. In response, health information systems are going through major changes: focusing more on the patient and what the patient can do to help to improve his own health care. A lot has been said about what the patient’s role should be in the 21st century. However, in a way, the patient is still being left out, without the ability to decide about his role and impotent to exercise his rights as the owner of his own EHR. Moreover, there exists a general lack of awareness among the general public about the major risks involved in the unbounded disclosure of personal health related data. The continuous growth of privacy incidents, resulting from target profiling and mining off individual health histories, by human resource departments or insurance companies, demonstrates the fragile perception the general public has for these matters. To help us in assessing this situation we have conducted several interviews with patients older than 18 years in order to determine their opinion on matters regarding ’patient empowerment’ and their associated EHRs: particularly who should have access and what were the real reasons behind those answers. In this paper we analyze the results of our questionnaire and present and discuss in detail the answers provided by 100 patients: 70 female and 30 male from diverse strata of the Portuguese population.