PANDORA: Patient-centered digitalization: An ethical analysis of the role of patient organizations as actors in the context of digitalization in health-related research and care
from 01/12/2021 until 31/12/2024
What is ist about?
Patient organizations and self-help groups (PO/ SHO) are increasingly relying on digital tools in their work or are actively promoting digitalization projects by participating in research themselves. When dealing with e-health offerings, obstacles can arise with regard to ethical values that can impair the competent use of digital offerings. Participatory research involving patients as co-researchers on topics relating to digitalization in the healthcare sector offers special opportunities to help shape this research, but also poses special challenges. The PANDORA research network therefore aims to investigate the ethical and social aspects of participatory research into and application of e-health technologies in the healthcare sector. Special attention is being paid to digital applications, with PO and SHO involved as stakeholders.
How did citizens participate in this research?
In a mixed-method approach, the perspective of patient associations was collected as comprehensively as possible using qualitative and quantitative methods and the ethical implications of digitization and its effects on the PO, its members and other patient groups were worked out.
A patient advisory board was formed for the research project, which was involved in all phases of the development and implementation of the research project. For example, in the compilation of documents, key questions for semi-structured interviews, questions for online surveys and workshops with focus groups, which were conducted with members and representatives of PO and SHO.
At a stakeholder conference, members of PO and SHO were invited to write a position paper on the topic of participation in participatory research on digitalization in healthcare. In a discursive, consensus-oriented process, they developed joint positions to present the status quo and demands for the future to politicians and scientists.
Aim
What does research contribute to?
The network aims to support those affected as well as PO and SHO in the responsible use of e-health services in the medical field and to empower them to make self-determined decisions regarding digital technologies in the healthcare sector. Various formats were developed to strengthen this digital health literacy: E.g. an application for PO and SHO that can be used to evaluate digitalization projects from an ethical point of view or short videos and podcast episodes for those affected that explain ethical aspects of digitalization in healthcare in connection with the project.
The research project also contributes to strengthening participatory research on digitalization in healthcare itself, which is based on mutual respect. To this end, opportunities and challenges were made visible and supported in being brought to the attention of the public and politicians.
What happens to the results?
- The position paper of the participating PO and SHO was presented to the public at a press conference in Berlin (12.11.2024) and made available online: https://doi.org/10.48441/4427.1990
- The results of the surveys will be incorporated into the development of ethical evaluation criteria and recommendations for digitization processes, which can be used as a kind of tool by laypersons.
- The constantly updated, accessible project website provides information about the methods and results in a way that is understandable to laypeople: https://pandora-forscht.de/
- In addition to the scientific publications and posters, popular science articles on the project can also be accessed on the website
- In a podcast accompanying the project, the research topics and interim results were discussed in layman's terms with scientists and patients: https://pandora-forscht.de/podcast/
- An animated short film series provides an insight into important methods and results from the project, which will be available on the website in March 2025
Needed equipment
The participatory research activities have already been completed.
About funding
Funding bodies: Bundesministerium für Bildung und Forschung (BMBF)
About branding
Profile image design by: © PANDORA Forschungsverbund
Logo design by: © PANDORA Forschungsverbund
Created Feb. 28, 2025, 3:50 p.m.
Updated March 13, 2025, 10:56 a.m.
