ABSTRACT: Over the last years the amount of personal health-related data stored has grown considerably. In parallel, IT research proposed ever more techniques to query large data collections more efficiently. Under the key word of “semantic interoperability“ scientists set out to make health related data available cross national borders and other semantic divides, e.g. cross-or multi- disciplinary.
Often, these developments are seen as a thread to the individual’s right to control her/his data. It is stated that the advantages in healthcare provided do not outweigh the dangers for personal data integrity. This situation arises from the fact that hitherto research focuses mainly on advertising better accessibility of data for medical professionals in both, the clinical domain and research.
In this presentation technological trends to prepare better understanding and thus, better control of the individual’s own health data will be highlighted. Furthermore, necessary conditions for responsible ways to acquire and store personal health data will be presented. Re-using data must be a means to cut down the number of necessary tests that patients have to undergo, and secure faster bench to bed transition of the biomedical state of the art. All these aspects need to be taken into account when the ethical benefits are weighed against the threads of new technologies dealing with highly sensitive data.
The strategy for the future must be to use semantic interoperability to empower patients to do both, get better information on their health statues and be better prepared to take care of their medical information, provide access or deny it were reasonable.