HiGHmed: Heidelberg – Goettingen – Hannover Medical Informatics
Department of Medical Ethics and History of Medicine
Ethics subproject: "Ethical and societal implications of Big Data-enabled medicine from a stakeholder perspective".
Carried out by:
Prof. Dr. Silke Schicktanz schick(at)gwdg.de (PI)
PD Dr. Mark Schweda (PI)
Lorina Buhr, M.A. lorina.buhr(at)med.uni-goettingen.de
Dr. Zümrüt Alpinar Sencan zuemruet.alpinar-sencan(at)med.uni-goettingen.de
Dr. Katharina Beier (former co-worker)
Funding: German Ministry of Education and Research (BMBF)
Duration: 2018–2022
Background
HiGHmed is one of four consortia throughout Germany that are funded by the German Federal Ministry of Education and Research (BMBF) within the framework of the National Medical Informatics Initiative Germany (https://www.medizininformatik-initiative.de/en/start) (duration 2018-2022). The German Cancer Research Centre (DKFZ) in Heidelberg as well as other clinical sites and industrial partners (http://www.highmed.org) complement the networks of university hospitals in Heidelberg, Göttingen and Hanover. HiGHmed consortium, which includes clinicians, medical computer scientists and medical ethicists, aims to establish and develop network of data integration centers (MeDICs) at the three participant university hospitals. By means of novel medical informatics solutions, data exchange across locations is to be enabled, thus improving the efficiency of clinical research and patient care.
Subproject Ethics and Stakeholders
The Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen is part of the "Ethics and Stakeholders" work package within the framework of HiGHmed, which is conducted together with partners from the University of Heidelberg (National Center for Tumor Diseases, Prof. Dr. Eva Winkler) and the Charité Berlin (Berlin Institute for Health, Prof. Dr. Dr. Daniel Strech). Our research focuses mainly on the investigation and evaluation of patient participation within the framework of big data-based research approaches and its implications for professional action and health care. In an empirical-ethical interview study with experts, representatives of patient organizations and socio-political stakeholders, the specific ethical challenges and prospects of using Big Data in medical research and health care as well as the normative significance of patient participation will be investigated. The theoretical and empirical-ethical findings will be used, among other things, to develop ethical recommendations for the implementation of 'Citizen Research' in a clinical research context.
Events
Workshop at the AEM annual conference, September 2018: "Effiziente medizinische Forschung oder gläserner Patient? Szenarien der Big Data Medizin – Ethische und soziale Aspekte der Datenintegration im Gesundheitswesen" (Dr. Katharina Beier, Holger Langhof, MPH, Dr. Christoph Schickhardt, Tobin Schumacher, PD Dr. Mark Schweda, Prof. Dr. Eva Winkler)
Round table discussion at the 12th CeBiTec symposium "Big Data in Medicine and Biotechnology", Center for Interdisciplinary Research (ZiF) Bielefeld, März 2018 (Dr. Katharina Beier)
Presentations and Podcasts
Presentations
- Berlin 2022. Einwilligung und Partizipation in Big-Data-Forschungsprojekten: Gemeinsamkeiten und Unterschiede verschiedener Akteursperspektiven aus ethisch-empirischer Sicht. (auf Deutsch) MII Sympoisum 2022, DBB Forum, Berlin, Germany. (Schicktanz & Alpinar-Sencan) (Oct.)
- Frankfurt am Main 2022. Einwilligung und Teilnahme an datenintensiver Medizinische Forschung: Expert*innen-Perspektiven im deutschsprachigen Kontext. Jahrestagung 2022 der Akademie für Ethik in der Medizin (AEM), Evangelischen Akademie Frankfurt, Frankfurt am Main, Deutschland. (Alpinar-Sencan, Buhr & Schicktanz) (Sept.)
- Berlin 2019. "Big Data aus der Sicht von Patientenorganisationen: Erwartungen, Wünsche, Perspektiven sowie methodische Hürden von Patientenpartizipation", Gesundheitsdaten für die medizinische Forschung: Wie können Patienten partizipieren?, tmf/MII, Berlin, Germany. (Schicktanz) (August)
- „My data, my choice? – Patient organizations’ attitudes towards ‘Big Data’-driven approaches in personalized medicine. An empirical-ethical study“, Special Topic Conference (STC) der European Federation for Medical Informatics Association (EFMI), April 2019 (Carolin Rauter, Dr. Sabine Wöhlke, Prof. Dr. Silke Schicktanz)
- „Teilnahme oder Teilhabe? Eine kritische Analyse des Partizipationsdiskurses im Kontext von Forschung mit Big Data“, AEM-Jahrestagung, September 2018, Köln (Dr. Katharina Beier, PD Dr. Mark Schweda, Prof. Dr. Silke Schicktanz)
- „Ethische Überlegungen zum Partizipationsdiskurs im Kontext von Big Data-Forschung“, Vortrag im Forschungscolloquium am Centre for Ethics and Law in the Life Sciences (CELLS) Juni 2018, Hannover (Dr. Katharina Beier, PD Dr. Mark Schweda, Prof. Dr. Silke Schicktanz)
Podcasts
- „Patienteneinbeziehung – Potenziale und Möglichkeiten“, ein Podcast mit Prof. Dr. Silke Schicktanz u. Maria Klein-Schmeink in der Reihe „Digitalisierung der Medizin", einem Projekt von HiGHmeducation, nachhörbar hier.
Partner-Institutions and Websites
- Medizininformatik-Initiative (BMBF) http://www.medizininformatik-initiative.de
- HiGHmed-Konsortium http://www.highmed.org
- Universitätsmedizin Heidelberg, Nationales Centrum für Tumorerkrankungen (Prof. Dr. Eva Winkler) https://www.nct-heidelberg.de/forschung/nct-core-services/nct-epoc/team.html)
- Charité Berlin, Berliner Institut für Gesundheitsforschung, AG Translationale Bioethik (Prof. Dr. Dr. Daniel Strech) www.bihealth.org/de/quest-center/team/
Publications
- Beier, K., Schickhardt, C., Langhof, H. et al. (2019). „Effiziente medizinische Forschung oder gläserner Patient? Szenarien der Big Data Medizin – Ethische und soziale Aspekte der Datenintegration im Gesundheitswesen“. Ethik in der Medizin, 31(3): 261–266. https://doi.org/10.1007/s00481-019-00541-6
LINK: https://link.springer.com/article/10.1007/s00481-019-00541-6 - Beier, K., Schweda, M. & Schicktanz, S. (2019). „Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research”. BMC Medical Informatics and Decision Making, 19(1): 1-10. https://doi.org/10.1186/s12911-019-0799-7
LINK: https://link.springer.com/article/10.1186/s12911-019-0799-7 - Buhr, L., and Schicktanz, S. (2022). „Individual benefits and collective challenges: Experts’ views on data-driven approaches in medical research and healthcare in the German context”. Big Data & Society, 9(1), p. 20539517221092653.
LINK: https://journals.sagepub.com/doi/full/10.1177/20539517221092653 - Buhr, L., Kaufmann, P. L. M., and Jörß, K. (2022). „Attitudes of Patients with Chronic Heart Failure toward Digital Device Data for Self-Documentation and Research in Germany: Cross-Sectional Survey Study”. JMIR Cardio.6(2):e34959, URL: cardio.jmir.org/2022/2/e34959, doi: 10.2196/34959
LINK: https://cardio.jmir.org/2022/2/e34959/
Related publications
- Schicktanz S, Buhr L. (2021). „Kollektivität, Partizipation und Solidarität in einer zeitgemäßen Bioethik“, in: Fehse et al (Hg.), Fünfter Gentechnologiebericht. Standpunkt und Perspektiven für Forschung und Anwendung, Forschungsberichte der interdisziplinären Arbeitsgruppen der Berlin-Brandenburgischen Akademie der Wissenschaften 44, Nomos: Baden-Baden, pp. 401–414.
- Rauter, C., Wöhlke, S., and Schicktanz, S. (2021). “My data, my choice? – Patient Organizations’ attitudes towards big data-driven approaches in personalized medicine. An empirical-ethical study”. Journal of Medical Systems, 45(4): 1-10.
LINK: https://link.springer.com/article/10.1007/s10916-020-01702-7 - Rauter, C. M., Wöhlke, S., and Schicktanz, S. (2019). „Organizations Towards “Big Data"-Driven Approaches in Personalized Medicine? An Empirical-Ethical Study in Health-Related IT”. Studies in Health Technology and Informatics, 258: 199-200.