Chapter II - Understanding the Concepts

Summary

Introduction – Building on the analysis of the legal roots of the patient's right to data protection, this second chapter continues to delineate the concepts ‘patient’ and ‘data protection’, the two core concepts in our discussion. It is essential to establish the precise meaning of these two concepts because they are used in several contexts in slightly different ways. In the next three sections, the definitions of both concepts are explored building on an analysis of European regulatory documents.

SECTION 1. THE PATIENT

Individual receiving healthcare – Often, the word patient is connected to ‘suffering’, ‘recovering’, and ‘care’. Originally, the word ‘patient’ also stems from the Latin verb ‘pati’, which means ‘to suffer’. It is connected to undergoing treatment, going through an operation, or being subjected to therapy. Today, the limitation to a passive individual who suffers and needs a healthcare practitioner's attention is no longer expedient. While the concept ‘patient’ is still primarily connected to the concept ‘healthcare’, the concept ‘healthcare’ encompasses more than curing those who suffer.

In 1994, the WHO defined ‘healthcare’ in the Declaration on the Promotion of Patients’ Rights as encompassing “a full range of services covering health promotion and protection, disease prevention, diagnosis, treatment, care and rehabilitation”. Although no explicit definition of ‘the patient’ is provided, the WHO further clarifies that given this definition, the patient may be a person who enjoys a high level of wellness, a person who is sick and dependant or a person who faces permanent disability or terminal illness. The WHO speaks of ‘individuals’, not ‘patients’ when it discusses the patients’ rights. This emphasises the broad scope of the Declaration.

A similar approach can be found in the 1997 Convention on Human Rights and Biomedicine. In that Convention, it was decided to adopt the term ‘individual’ instead of ‘patient’. The explanatory report indicates that the terms individual and human being are preferred because of their general character. However, contrary to the WHO, the Convention on Human Rights and Biomedicine links the term ‘individual’ to ‘human being’, but not necessarily to healthcare. The connection between the terms ‘individual’ and ‘human being’ needed to stress the link between the Convention on Human Rights and Biomedicine and the European Convention for the Protection of Human Rights and Fundamental Freedoms.