The results of this project were disseminated as follows:
- Academic publications and presentations
- Participation at public events
- Consultation and collaboration with international policymakers
- Public engagement through social media
Lucivero, F. (2017). Lessons about So-Called “Difficult” Patients from the UK Controversy over Patient Access to Electronic Health Records. The AMA Journal of Ethic, 19(4), 374–380.
Dove, E. S., Kelly, S. E., Lucivero, F., Machirori, M., Dheensa, S., & Prainsack, B. (2017). Beyond individualism: Is there a place for relational autonomy in clinical practice and research? Clinical Ethics, 1477750917704156.
Aicardi C, Del Savio L, Dove ES, Lucivero F, Tempini N, Prainsack B (2016) “Emerging ethical issues regarding digital health data. On the World Medical Association Draft Declaration on Ethical Considerations Regarding Health Databases and Biobanks”, Croatian Journal of Medical Ethics [equal contribution, alphabetical order]
Lucivero F, (2016) Book Review: The Wellness Syndrome by Carl Cederström and André Spicer (Polity Press, 2015) in Ëa: Journal of Medical Humanities and Social Studies of Science & Technology
Lucivero, Federica, and Barbara Prainsack.2015. “The Lifestylisation of Healthcare? ‘ ConsumerGenomics’ and Mobile Health as Technologies for Healthy Lifestyle.” Applied & Translational Genomics, 4; 44-49.
Lucivero F “Access to medical records as self-monitoring: empowerment ideals, relational practices and clashing normativities”. EASST conference, 31st-August-3rd September 2016, Barcelona, Spain.
Lucivero F and Kosta E ‘Governing data-intensive approaches to medicine: informed consent’. Sixth Biennal Conference ECPR Standing Group on Regulatory Governance, 6 – 8 July 2016, Tilburg, the Netherlands.
Lucivero F. “From knowledge to power? Articulating expectations of patients’ empowerment through access to health records”. Digital Health/Digital Capitalism conference, Leeds Beckett University, July 4 2016, Leeds, UK.
Lucivero F. Will mHealth revolutionize healthcare? A matrix to distinguish ethical questions. UNESCO Chair in Bioethics – 11th World Conference, 20-22 October 2015, Naples, Italy.
Lucivero F. Health and lifestyle: a blurring distinction in the age of wellness apps. “Trading Zones in Technological Societies”. October 15-16, 2015, Liège, Belgium.
Lucivero Federica, Opening the mHealth box and finding it too full: methodological principles for ethical analysis of mobile health ,Sharpening the Edges of Bioethics in UK, 2nd Institute for Medical Ethics Research Conference, 18 June 2015, Newcastle University
Lucivero Federica. Opening the mHealth box and finding it too full: methodological principles for ELSI analyses of mobile health, workshop “Biosocial Relations and Hierarchies”, Reykjavik 25-26 May 2015
Lucivero Federica, Maartje Niezen and Samantha Adams Sleeping information: describing circuits of knowledge in apps for self-management of sleep disorders. Tilting 2015 Conference: Under Observation: Synergies, benefits, and trade-offs of eHealth and surveillance. Tilburg University. April 22-23, 2015, Program; also presented at Data Crunch meeting, Egenis group, Exeter University July 2015.
Lucivero Federica, Mobile health technologies and the lifestylization of healthcare Workshop: Tracking Culture: Surveillance in the sphere of intimacy, 14-15 January 2015, Aarhus University, Denmark
Lucivero Federica. When technology meets public health: opening the black box of artefacts for health promotion and finding morality in there. Presentation at “The ethics of health incentive programs” conference, Munich Centre for Ethics, December 19-20, 2014. Program
Lucivero Federica, Health on the Move: exploring the ethical social and political underpinnings of portable technologies for healthcare and lifestyle, Global e-Health Forum, Imperial College London.
Lucivero, Federica. Being healthy everywhere and at any time: the legal, ethical and social challenges of mobile health. e-health-Legal Ethical and Social Challenges workshop, Middlesex University, London, October 28-29, 2014. http://www.eis.mdx.ac.uk/research/groups/Alert/ehealthwks2014/eHealth-2014-Lucivero.pptx.pdf
Lucivero, Federica. Assessing the promises of mobile health technologies. European Association for the Study of Science and Technology (EASST) conference: Situating Solidarities: Social Challenges for Science and Technology Studies, Torun, Poland, September 17-19, 2014
Niezen, Maartje, Lucivero Federica and Adams, Samantha. Self-management by eCoaching: Redefining roles and blurring borders in health and care. European Association for the Study of Science and Technology (EASST) conference: Situating Solidarities: Social Challenges for Science and Technology Studies, Torun, Poland, September 17-19, 2014
Participation at public events
October 13, 2016 Invited speaker at the panel “Life gamified: the practices of the quantified self” at King’s Arts and Humanities Festival; presentation on “Taming monsters or revising the order? Mobile apps and self-tracking devices and the blurring boundaries between what is medical and what is not”
April 21, 2016 Invited speaker at the panel-led debate on “Good to share? Data, research, privacy and the NHS” event in the Public Open Day organized by the Oxford Biomedical Research Centre.
April 6, 2016 Invited speaker at the bioethics panel on “genetic privacy” at the GapSummit, University of Cambridge (an international and inter-generational summit addressing the gaps in the biotechnology sector, organized by the Global Biotech Revolution, a student-led not-for-profit organisation).
February 17, 2015 Invited speaker at the panel on “the Future of eHealth” (final event of the eHealth module in the Master of Public Health) organised by the Global eHealth Forum at Imperial College, Imperial College London.
Consultation and collaboration with international policymakers
Participation to the public consultation of the World Medical Association on ethical considerations regarding health databases and biobanks: Lucivero et al. (2015) A Response to the WMA DRAFT DECLARATION ON ETHICAL CONSIDERATIONS REGARDING HEALTH DATABASES AND BIOBANKS, DOI: 10.13140/RG.2.1.3334.4163
January 2015: 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)
Public engagement through social media
Aicardi C, Del Savio L, Dove E.S. , Lucivero, Mittelstadt B., Niezen M. , Prainsack B., Reinsborough M and Sharon T (2016), ‘Shortcomings of the Revised “Helsinki Declaration” on Ethical Use of Health Databases’, Hasting Centre Bioethics Forum; published on November 2nd 2016 and available at: http://www.thehastingscenter.org/shortcomings-world-medical-associations-revised-declaration-ethical-use-health-databases/ [equal contribution, alphabetical order]
Aicardi, C. Damjanovicova, M Del Savio,L Lucivero, F Mormina, M Niezen M, Prainsack B, (2016) Could DTC Genome Testing Exacerbate Research Inequities? Hasting Centre Bioethics Forum available at: http://www.thehastingscenter.org/Bioethicsforum/Post.aspx? [equal contribution, alphabetical order]
I used my Twitter account to disseminate my research: @fedeluci (Twitter)
Federica Lucivero “Health Apps” in the Health and Society Podcasts Series.