Dr Federica Lucivero
Senior Researcher in Data and Ethics
Dr Federica Lucivero recently joined the Ethox Centre as Senior Researcher in Data and Ethics. Her expertise and interest span across different areas and disciplines: ethics and social studies of science and technology, bioethics, governance of innovation, philosophy of science and technology. In her previous position at King’s College London, she led the project Health on the Move, funded by the Intra-European Marie Curie Programme. This project was an exploratory study on the ethical, social and political dimensions of portable technologies for health and lifestyle. Within the scope of the project, Dr Lucivero’s research focused on the ethical aspects of the increasing introduction of IT (online portals, wearable sensors, mobile apps) in care pathways, individual health practices, and biomedical research. This process of increasing digitation has the potential to redefine roles and responsibilities in healthcare, reshape doctor–patient relationships, force a renegotiation of rights and duties, and provoke larger shifts in research and clinical practice. The starting point of the project was that assessing the ethical dimensions of these shifts cannot happen on a purely theoretical level: it requires empirical investigation in order to understand digitised clinical, self-care, and research practices, and to understand how digital health services are designed and governed.
Federica’s research currently focuses on four main themes:
a) the meanings of patient access to electronic health records (EHRs): this research theme is based on a pioneering qualitative study where she analysed the NHS England policy vision around access to records and interviewed 25 patients about their experience with online access to records to understand how the promises of “empowerment” translate into practice of access (see also here);
b) the governance of health apps: with a specific focus on the moral justification of policy and regulation around health apps and the difficulties found in governing these hybrid objects between medical devices and gadgets (see here);
c) the ethics and epistemology of biomedical research using EHRs: exploring issues of informed consent, quality of the data, and relationships between public healthcare services and private technology providers (work-in-progress);
d) the meta-level question regarding the boundaries between bioethics and the social sciences: what does that mean to engage in empirical bioethics? How to move from the descriptive to the normative? (see here).
Dr Lucivero cofounded the Data and IT in Health and Medicine Lab and in January 2015, she was appointed member of a Working Group established by the European Commission to develop guidelines for the assessment of health apps quality (https://ec.europa.eu/digital-single-market/en/news/new-eu-working-group-aims-draft-guidelines-improve-mhealth-apps-data-quality).
The shared decision making of older adults in healthcare
Pusey E. et al, (2019), Working with Older People
A mobile revolution for healthcare? Setting the agenda for bioethics.
Lucivero F. and Jongsma KR., (2018), J Med Ethics, 44, 685 - 689
Digital Medicine: An Opportunity to Revisit the Role of Bioethicists.
Jongsma KR. et al, (2018), Am J Bioeth, 18, 69 - 70
Beyond individualism: Is there a place for relational autonomy in clinical practice and research?
Dove ES. et al, (2017), Clin Ethics, 12, 150 - 165
Lessons about So-Called "Difficult" Patients from the UK Controversy over Patient Access to Electronic Health Records.
Lucivero F., (2017), AMA J Ethics, 19, 374 - 380