13 Amendments of Urszula KRUPA related to 2018/2776(RSP)
Amendment 17 #
Recital D
D. whereas data concerning the health of EU citizens is a key enabler for digital transformation; whereas it is primarily the Member States which are responsible for monitoring the health system and the protection of citizens and in particular of their data, and whereas the availability of data varies greatly across Member States, and whereas, due to the lack of interoperability and market fragmentation across health systems, citizens cannot yet fully benefit from the digital single market, which needs, for reasons of security, strict demarcation of its competences and responsibility among institutions of the EU and the Member States operating in this sector;
Amendment 25 #
Recital G
G. whereas in the progressive digitalization of the society, patients, caregivers and healthcare professionals face the challenges of using information technology and the digital infrastructure of patient records in the context of personal data security, and taking into consideration the fact that the people listed cannot be made responsible for personal data security - this should be undertaken by a specialised body with clearly-defined competences which is under the control of the EDPS;
Amendment 29 #
Recital G a (new)
Ga. whereas patients' rights, as set out in the light of the Charter of Fundamental Rights, among others, override any rights stemming from the possibility of having electronic data, and whereas every patient must be guaranteed the freedom to choose under the so-called conscience clause and the possibility of exercising choice in the field of information technology;
Amendment 40 #
Paragraph 3
3. Is of the opinion that the digital transformation of health and care needs to be patient-centred, taking into consideration patients' overarching rights and the possibility of exercising choice, which are the expression of personal freedom;
Amendment 56 #
Paragraph 6
6. Regrets that, at present, many citizens in Europe have limited electronic access to their personal health data, in particular in cross-border treatments; expects the institutions responsible for combating digital exclusion to ensure that all citizens in the EU are ensured soonest- possible access to such data;
Amendment 60 #
Paragraph 7 a (new)
7a. Underlines the overriding importance of protecting personal data over the right to access all electronic medical documentation and proposes identifying, within the scope of that documentation, basic data and extended data; access to the latter would, in contrast to basic data, not be universal but would require specific consent on the part of the patient concerned;
Amendment 72 #
Paragraph 12
12. Calls on the Commission and Member States to support projects that use real-world data leading to favourableconduct pilot studies to determine the appropriateness of using actual data (with particular regard to their use in algorithmic AI actual data analysis) to obtain beneficial health outcomes;
Amendment 76 #
Paragraph 14
14. Considers that there is a need to increase the quality of health data, without the need to standardise data collection, promote interoperability of European disease registersto avoid centralising existing health data in order to prevent their use by unauthorised entities for commercial purposes, for example, and to advance the analysis of data using high -performance computing and modelling as well as(e.g. by a European BIG DATA centre) as well as to advance the protection of confidential or sensitive data;
Amendment 78 #
Paragraph 15
Amendment 84 #
Paragraph 18
Amendment 86 #
Paragraph 18 a (new)
18a. Calls for the establishment of a European BIG DATA Centre, where Member State representatives would conduct global-level research, ensuring that the autonomy of individual countries' data protection and processing is maintained and operating within the healthcare systems of those countries;
Amendment 89 #
Paragraph 20
20. Considers that digital healthcare tools are well positioned to address challenges of accessibility to health information and health literacy, both essential for better disease prevention and more effective disease management; considers that these tools, when built with the contribution of the appropriate health professionals and civil society users, allow for more accuracy and completeness of information enabling the promotion of healthy habits and prevention activities, as well as the support to decisions in health and patient adherence to treatments.; however, use of these tools will entail the possibility of legal and financial accountability for their defective operation, particularly if this leads to a deterioration in patient health or even to death;
Amendment 109 #
Paragraph 25
25. Considers that a positive balance to citizens between the use of digital tools and direct consultation with health professionals should be achieved, among other things by means of establishing a credible intermediary between patients and health professionals, which may be an EU institution or a specialist external organisation; considers also that a secure access and cross-border sharing of health data would be a positive step forward;