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The Ethics of Participation unit at the IMDE is dedicated to conducting accompanying research into participatory approaches in medical research. The focus is on analysing their impact, their ethical implications and the methodological prerequisites for successful participation. The aim is to systematically investigate the conditions under which citizens, patients and other social stakeholders can be meaningfully and responsibly involved in medical research processes. On this basis, the IMDE contributes to the development and evaluation of participation formats and devises concepts for systematically assessing and further developing the quality and scope of participatory structures. A particular focus is on accompanying research into patient participation at the National Centre for Tumour Diseases.
Accompanying Research on Patient Involvement in Cancer Research
Patient involvement can help to align cancer research more closely with the experiences, needs and concerns of those affected. At the same time, it is not yet sufficiently clear how involvement should be structured in different research contexts, under what conditions it is successful, and what effects it can have.
Since 2024, the accompanying research project on patient involvement at the National Centre for Tumour Diseases (NCT) in Heidelberg has been investigating these questions.
Our objectives
We aim to gain a better understanding of:
- which forms of patient involvement are suitable for different contexts of cancer research
- what conditions promote successful and high-quality participation, and
- how the quality and impact of patient involvement can be studied and evaluated.
The findings will help to continuously develop patient involvement at the NCT and beyond.
How we conduct our research
We combine various qualitative and quantitative research methods. These include interviews and focus groups with different stakeholders, quantitative surveys, and a scoping review of the international state of research on patient and public involvement and its impact on cancer research. You can find the report on the scoping review here.
What we have learnt so far
Our findings to date show that successful patient involvement requires the right conditions at several levels. In addition to individual skills, clear roles, good collaboration within the research team and sufficient time and human resources are particularly important. Organisational and systemic conditions also play a key role. Initial publications detailing our findings are currently in progress and will be available on this page as soon as they are officially published.
Participation in the research process
Patient involvement is not merely a subject of research in our project. It is also part of our own working methods: a sounding board comprising six patient representatives and a coordinator has been supporting the project from the outset and continuously contributes perspectives and experiences to the research process.
Publications
Schmollinger, U., Kleine, J., Weis, A., Heiligenthal, L., Mehlis, K., Winkler, E. Patient involvement in clinical cancer research. Fokus Onkol 29, 32–34 (2026). doi.org/10.1007/s15015-026-4635-5
Körner, C., Weis, A., Huber, M., Schilling, A. Patient involvement in the development and conduct of clinical trials. Fokus Onkol 29, 36–40 (2026). doi.org/10.1007/s15015-026-4677-8
Our team
The accompanying research is interdisciplinary in nature and brings together perspectives from the social sciences, philosophy and medical ethics, health sciences and healthcare research.
IMDE contact