El futuro del big data en el ámbito sanitario. Las claves jurídicas del tratamiento de los datos de salud

  1. Latorre Luna, Leticia
Supervised by:
  1. María Magnolia Pardo López Director
  2. Julián Valero Torrijos Director

Defence university: Universidad de Murcia

Fecha de defensa: 04 October 2021

Committee:
  1. María Carmen Plana Arnaldos Chair
  2. Alfonso Ortega Giménez Secretary
  3. Mónica Vilasau Solana Committee member
Department:
  1. Administrative law

Type: Thesis

Abstract

It is an obvious fact that writing, especially classical texts and scientific articles, have been and are the main sources of knowledge and information, and that it is partly thanks to them that humanity has evolved throughout history. However, in the new digital era and with global connectivity through new technologies and the Internet of Things, personal data have also become great sources of knowledge and information, especially health data, as it has been proven that if large volumes of health data are collected, processed and analysed through the application of big data tools, accurate information and knowledge of great value in the field of health and biomedical research, among others, can be extracted from them. Specifically, health data, after being analysed by means of algorithms with the application of big data technologies, provides knowledge and information of great value that helps the healthcare sector to evolve efficiently and proactively, anticipating diseases and moving towards predictive, precise, personalised and quality medicine. Likewise, big data manages large volumes of data, even unstructured data, at high speed and also allows the creation of predictive models that serve as a basis for the different healthcare actors in decision-making. In summary, big data offers advantages and benefits in the healthcare sector and biomedical research, including: chronic patient monitoring, genomic research, improved personalised care, clinical operations, personalised medicine, virtual autopsies, remote patient monitoring, improvements in medical processes and, more recently, it is proving very useful in the research carried out to combat the COVID-19 crisis, among others. In this sense, despite the fact that the current European data protection legislation grants special regulation to health data in accordance with certain guarantees, nevertheless, the GDPR, although it establishes certain singularities for the processing of data in the field of health, nevertheless uses concepts of a certain ambiguity and is also based on the establishment of general principles whose practical application in the specific case may be problematic, particularly in the field of health. For this reason, this paper defends the need for a sectoral law on health data protection and big health data as an effective and efficient tool to make the most of all the knowledge that could be obtained from health data, where, on the one hand, the protection of health data is specifically regulated in order to guarantee the lawful processing of health data while safeguarding the data owner's right to data protection. On the other hand, it contemplates in its articles the measures and guarantees that must be respected by the developers of public health and biomedical and pharmaceutical research projects of general interest that apply big data technologies, which must be implemented from the design of the project in order to strengthen the trust of the data subjects and ensure respect for their rights