Mobilizing participation: The first German stakeholder conference on engaging patients and self-help organizations in digital health research
Paula Nadler, Manuel Schaper, Thomas M. Duda, Hartmut Gartzke, Wiebke Papenthin, Verena Winter, Silke Schicktanz, Sabine WöhlkeBackground
Digital transformation in the healthcare sector within the European Union (EU) raises various ethical concerns regarding the use of health research data and regarding how to address such concerns through ethical governance.
Methods
This article presents the results of the first German national stakeholder conference — a structured discourse process for developing political or ethical positions through citizen participation — which included patient organizations (POs) and self-help organizations (SHOs) (N=45). Participants were asked to describe their positions regarding participation and engagement in digital health research and health research data-sharing policies in an interactive process, facilitated by researchers from health care ethics.
Results
POs/SHOs emphasize the ethical relevance of patient autonomy and transparency as preconditions for trust. Therefore, data protection and transparent consent procedures are seen as a necessary part of responsible research. While recognizing the potential of large-scale data use to increase research efficiency, they stress the importance of promoting patient-centeredness through participatory approaches. Structured participation requires clear definition of tasks, empowerment of POs/SHOs, understanding of the special features of voluntary structures, and target group-oriented, barrier-free communication of research results. Their support depends on upholding strong legal safeguards and respecting individual rights. Additional demands include improved digital literacy, health literacy, and financial resources.
Conclusions
Future research should focus on dynamic consent models and fair participation structures. From the start, it should be clarified to POs/SHOs whether intended research projects are oriented toward the public good or primarily commercial. This can be an important factor in their decision to participate in research.