Projects on Digitalization & AI in the Research Group Schicktanz
2021 - 2022: Research Project: "Our Healthcare System of Tomorrow: Digitalization – Artificial Intelligence – Diversity"
Carried out by:
Dr. Ruben Andreas Sakowsky rubenandreas.sakowsky(at)med.uni-goettingen.de
Sabrina Krohm, M.A. sabrina.krohm(at)med.uni-goettingen.de (Projektkoordination)
Kai Hornburg, M.A. kai.hornburg(at)med.uni-goettingen.de
Johannes Welsch, M.A.
Niklas Petersen, M.A.
Julia Perry, M.A.
Julia Brose, B.A.
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Fuding: Lower Saxony Ministry of Science and Culture (MWK)
Duration: April 2021 – June 2022
External Project Website (German)
2020 - 2022: Research Project: „Ethical and Social Issues of Co-Intelligent Monitoring and Assistive Technologies in Dementia Care (EIDEC)“
Subproject "Professtional Perspectives on CIMADeC and the Ethics of Empowerment"
Prof. Dr. Silke Schicktanz sschick(at)gwdg.de
Fuding: German Ministry of Education and Research (BMBF)
Project partners: Carl von Ossietzky University of Oldenburg; University Medicine Rostock; German Center for Neurodegenerative Diseases (DZNE)
Dementia care is undergoing a major transformation as a consequence of demographic aging and technological developments. New co-intelligent monitoring and assistive technologies have become available to monitor and support the behavior of people with dementia. The aim is to promote independent living, detect or predict impending problems, relieve caregiver burden, and increase the overall quality and cost-efficiency of care. These socio-technical systems are using artificial intelligence, semantics and human interpretations, which is why we call them “co-intelligent”.
This project consortium examines co-intelligent systems in the everyday life environment of informal as well as institutional care settings. By combining approaches from technology assessment and empirically informed ethics, we investigate social acceptability and moral assessment using qualitative empirical methods. Thereby, we are interested in the following stakeholders from different backgrounds:
- family caregivers
- professional caregivers
The ethical analysis focuses on two important norms of dementia care:
- privacy and
The aim of this subproject is to explore professionals’ perspectives and attitudes towards the CIMADeC systems described by SP 1 and SP 2 and ethically reflect on the implications and conditions on empowerment.
In both institutional and domestic care settings, the acceptance of the described socio-technical systems by all stakeholders is of utmost importance. CIMADeC in institutional care settings such as care homes requires social acceptance of both professionals and residents. For professionals (doctors, nurses, social workers, cleaning personal etc.), such systems might imply assistance for their work. They can, for example, enable better assessment of whereabouts or moods of residents as well as provide support for physically demanding tasks. However, they can also pose a threat for (sometimes already precarious) working conditions. Therefore, it is relevant to understand how professional ethos and self-understanding are impacted by such socio-technical systems and how changes in the everyday-life of the working environment are perceived and morally assessed.
Also in domestic care, social acceptance of both PWD and family members as well as outpatient caregivers is important. CIMADeC can help reduce burdens of caring relatives and professional caregivers for everyday tasks, thus allowing more space for themselves and their interpersonal relationships with those affected. At the same time, there is a risk that CIMADeC may undermine the independence the stakeholders involved and interferences with their right to autonomy/self-determination might be overlooked.
The focus of SP 4 lies on the positive and negative potentials of empowerment, both as a process and a result of social care relations in the context of technically assisted care.
As there exists insufficient knowledge about the moral and social issues, explorative qualitative interviews with professionals will be conducted:
(1) in institutional care homes that have practical experiences with such technological devices (n≈10) and
(2) in institutions that are naïve to such systems (n≈10).
Those experts will be recruited from different hierarchy levels, to include nurses, social workers and directors of care homes.
Additionally, professionals in ambulant care (n≈5), who can be confronted with CISDEC in informal care settings (see SP 3), and developers (informatics, engineers) of such systems (n≈5) will be interviewed to complete the perspectives on the life cycle of co-intelligent assistive systems.
In order to make a theoretical contribution to empowerment within this specific technological context, SP 4 will also focus on the complex ethical concept of empowerment, which plays a central role in dementia care. Therefore, we will comprehensively examine different levels of interaction in the following five dimensions:
(3) participation in decision-making regarding technology development and use,
(4) well-being and
(5) accountability in individual cases.
2018 – 2022: Research Project: "HiGHmed: Heidelberg – Goettingen – Hannover Medical Informatics"
Subproject: "Ethics and Stakeholders"
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 (ehemalige Mitarbeiterin)
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.
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.
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)
Berlin 2022. Einwilligung und Partizipation in Big-Data-Forschungsprojekten: Gemeinsamkeiten und Unterschiede verschiedener Akteursperspektiven aus ethisch-empirischer Sicht. (in German) 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. Annual Conference of the German Academy of Ethics in Medicine [Jahrestagung 2022 der Akademie für Ethik in der Medizin (AEM)], Evangelischen Akademie Frankfurt, Frankfurt am Main, Germany. (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) of the 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 annual conference, September 2018, Cologne (Dr. Katharina Beier, PD Dr. Mark Schweda, Prof. Dr. Silke Schicktanz)
"Ethische Überlegungen zum Partizipationsdiskurs im Kontext von Big Data-Forschung", presentation for the research colloqium at the Centre for Ethics and Law in the Life Sciences (CELLS) June 2018, Hannover (Dr. Katharina Beier, PD Dr. Mark Schweda, Prof. Dr. Silke Schicktanz)
"Patienteneinbeziehung – Potenziale und Möglichkeiten", a podcast with Prof. Dr. Silke Schicktanz and Maria Klein-Schmeink for the series "Digitalisierung der Medizin", a project of HiGHmeducation. You can listen to it here (in German).
Medical Informatics Initative Germany (BMBF) https://www.medizininformatik-initiative.de/en/start
Heidelberg University Hospital, National Center for Tumor Diseases (Prof. Dr. Eva Winkler) https://www.nct-heidelberg.de/forschung/nct-core-services/nct-epoc/team.html
Charité Berlin, Berlin Institute for Health, WG Translational Bioethics (Prof. Dr. Dr. Daniel Strech) https://www.bihealth.org/en/research/quest-center/team/
- 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
- 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
- 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.
- 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
- 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.
- 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.