M. Àngels Barbarà
Link to the guide (original version available)
The Catalan Data Protection Authority (APDCAT) has launched, online, the Guide to data protection for patients and people using health services, a document that deals with general aspects of the protection of health data, an issue that has become very topical due to the COVID-19 pandemic. This is how Maria Àngels Barbarà, director of the APDCAT, explained it in her opening speech: "this guide focuses on a special category of data and on a group considered vulnerable, given their personal and emotional circumstances at the time the data is processed."
The guide covers and comprehensively addresses issues such as patients' rights to their data; the confidentiality of patient information; who can process health data and for what purpose; the form of health data communications to public administrations and institutions; and the processing of health data in the case of minors. The document also incorporates tools and resources that the APDCAT is putting at the service of patients and people using health services so that they may exercise their rights in the field of care.
The director of the APDCAT remarked that informed consent in the healthcare field should not be confused with the right to information provided for in personal data protection legislation, which is a right of all patients. And which should be provided regardless of the legal basis that applies. In fact, information regarding the processing of personal data helps to ensure that the individual has control over their information.
One of the particularities and attractions of the document is its pleasant and understandable format, as all issues are raised through a series of frequently asked questions, short and to the point, which shed light on common doubts and concerns of both patients and members of the healthcare community. Maria Àngels Barbarà emphasized that one of the principal objectives of this guide is to provide a direct and simple answer to the main questions that concern people when they are patients. It also deals with issues of concern for people who are not patients, such as accompanying family members. And all with the aim of improving the understanding of the different situations in which people may find themselves in the healthcare field.
Barbarà also wanted to highlight in her speech the preponderant role that artificial intelligence (AI) is taking on in the field of health. “AI should be understood as a support for healthcare professionals and not as a system that can make decisions regarding patients' health by replacing the intervention of professionals. In the healthcare field, AI helps to understand and draw conclusions about diseases in less time, thereby suggesting a diagnosis and the appropriate treatment. And of course, in the field of research, it provides immense possibilities for making unexpected discoveries; it is a huge evolution," said the director.
Cristina Dietrich, responsible for Regulatory Projects and Legal Studies at the APDCAT, delved into care purposes, administration and management of services, epidemiological and public health, health inspection, and research in health teaching at work, all of which process health information. She also emphasized the different rights that patients and health care users have when their data is used.
Data protection in times of pandemic: a very topical issue
The event was closed by Santiago Farré, head of the APDCAT Legal Department, who spoke about the protection of personal data during exceptional times such as the COVID-19 pandemic. Among other things, Farré analysed issues and situations that are very much on the agenda, such as the control of temperature in establishments, the use of apps to monitor health status and movements of people, the dissemination and processing of personal health data to alert potentially infected people, and so on. These are just some of the points that the guide addresses in the section on data processing for epidemiological and public health purposes.