Patient-oriented digitalization: An ethical analysis of the role of patient organizations as actors in the context of digitalization in health-related research and care (PANDORA)
Sub-project II:
Digitization processes in patient organizations: Experiences, attitudes and opportunities for active participation from the members' perspective
The background
In the healthcare sector, digitalization brings with it many new possibilities, which can be associated with opportunities as well as risks and challenges. Many patient and self-help organizations (POs and SHOs) are also increasingly relying on digital technologies in their work and are already working with research institutions, Clinical Departments and pharmaceutical companies to implement digitalization projects. In this context, the question arises as to what extent the ethical and social challenges that may be associated with digitalization are adequately taken into account.
Objective
The research network "Patient-oriented digitization: An ethical analysis of the role of patient organizations as actors in the context of digitization in health-related research and care" (PANDORA) aims to analyze the ethical and social aspects of such digitization projects and processes in the context of PO and SHO.
The project team at Hannover Medical School (MHH) is responsible for sub-project II of the research network. As part of this sub-project, the perspective of the PO and SHO (full-time and voluntary staff, board members, responsible members) and their members with regard to digitalization processes in the healthcare sector will be recorded. In particular, the focus will be on the ethical aspects of such processes (e.g. solidarity, personal responsibility, trust, conflicts of interest, Data Protection or privacy). In addition, insights are to be gained into active participation in such initiatives. Among other things, experiences, attitudes and opportunities with regard to these participation activities are to be identified.
The findings from the various sub-projects responsible at the individual locations will already flow together during the project period. Finally, they should enable the development of an evaluation tool that POs and SHOs can use to analyse and assess their digitalization initiatives from an ethical perspective. This should improve the digital health literacy of POs and SHOs as well as the competence of chronically ill patients and the general public in dealing with digital health technologies.
The PANDORA research network is funded by the Federal Ministry of Education and Research (BMBF) and includes the University Medical Center Göttingen (UMG) and the Hamburg University of Applied Sciences (HAW) as cooperation partners in addition to the MHH. The HAW is responsible for the management of the research network and the overall project coordination.
Method and approach
The MHH project team has chosen a mixed-methods approach for the implementation of sub-project II, in which qualitative interviews and a quantitative online survey will be conducted. Among other things, the individual interviews will be used to identify relevant topics for the subsequent online survey. The data collection is therefore carried out in a two-stage procedure. A total of 10-15 guided individual interviews are to be conducted with PO and SHO participants. For the standardized online survey, preliminary estimates indicate a participation of approx. 3200 members of PO and SHO. The data collected will be analyzed using established qualitative and quantitative evaluation methods. The results of the surveys will then be incorporated into the development of ethical evaluation criteria and recommendations for digitalization processes. The results are also published.
In addition, the MHH is actively involved in setting up participation structures with the POs and SHOs involved.
Project management (sub-project II)
Prof. Dr. Marie-Luise Dierks
Research assistants (sub-project II)
Dr. Jonas Lander
Simon Wallraf
Cooperation partner
Hamburg University of Applied Sciences
University Medical Center Göttingen
Project sponsor
Federal Ministry of Education and Research
Project duration
01.12.2021-30.11.2024