ABSTRACT
The European Union (EU) has made some changes to how they use health information in their digital system. They want to share and use data from public institutions better.
This could be good, but it could also be risky for people.
For example, it might let the government use big sets of data to decide who gets healthcare (especially in systems that use insurance). We need experts to look at this and tell the EU to make better rules for sharing data responsibly.
INTRODUCTION
DataCom is a project funded by the
European Com-mission within the HORIZON-MSCA-2022-PF-01 call in 2022. It has started on the 01/07/2023 at University of Turin at the Department of Law, under the supervision of Prof. Ugo Pagallo.
This project is all about making sure your health information is used in a good and safe way by government organizations.
We want to create a new set of rules to make sure they use your data responsibly and for the benefit of the public. To do this, we’ll come up with a new idea called “Ethical Commodification.”
It means using your personal information in a way that’s fair and good for everyone. We’ll test this idea in three countries: Italy, Spain, and the Netherlands.
This project brings together different experts from law, ethics, and computer science to make sure the government and you, as a citizen, are treated fairly.
OBJECTIVES
DataCom has three main goals.
1 – Creating New Rules: we want to make a new set of rules for how health information is used in the European Union. We’ll look at the current rules and come up with better ones.
2 – Understanding Who’s Involved: we’ll figure out who uses health information – like people who work in healthcare, researchers, and groups that help patients. We want to know what they know about using health data and how it affects people. We’ll ask them questions and talk to them.
3 – Teaching Public Servants: we’ll also teach people who work for the government in three countries (Italy, Spain, and the Netherlands) how to use your health data in a way that keeps your privacy safe and is fair.
We’re doing all of this to protect your health information and make sure it’s used in the right way.
METHODOLOGY
To make it happen, we want to hear the patients’ opinions about the reuse of their data. Do you want to donate your information to researchers? Do you wish that your data is used to fight Covid-19? Are you comfortable in knowing
that your data is used to make decisions about public healthcare?
We also want to hear the opinions of public servants, such as emploees of the government, doctors, researchers, statisticians. Why do they need your data? How do they consider the risks for patients? Do they consider
The results of the research will help us in creating guidelines to ensure that patients’ information are reused responsible and for the public good.