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<p>In recent years, oncological research has made significant progress improving treatment outcomes. Nevertheless, there is a&#xa0;growing recognition that greater focus must be placed on the patient’s perspective, particularly with regard to quality of life and psychological coping. This article examines the integration of patient experience and knowledge into cancer research from a&#xa0;multi-stakeholder perspective, with a&#xa0;focus on self-help-oriented research.</p><p>The article examines the integration of patient experience and knowledge into cancer research from a&#xa0;multi-stakeholder perspective, with a&#xa0;focus on self-help-oriented research. Cancer self-help plays a&#xa0;prominent role in patient participation and representation. The involvement of self-help groups (SHGs) and self-help organisations (SHOs) can significantly improve the feasibility, quality and, in particular, patient relevance of oncological studies. However, the degree of participation of members from SHGs and SHOs in research projects can vary greatly, from research without, to research with, or even research by self-help. The participatory and thus cooperative, joint and equal research represents the most democratic approach and is considered optimal. This results in various advantages for the directly and indirectly involved interest groups, such as researchers, patients and their relatives, healthcare professionals and care facilities, health and pension insurance funds, and society. However, self-help-oriented research is not without its prerequisites. The last part of the article discusses the conditions that promote success and the existing barriers to successful cooperation between research and self-help.</p>

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Der Mehrwert selbsthilfeorientierter Forschung in der Onkologie für Stakeholder in Deutschland

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年1月14日

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  • Christopher Kofahl,
  • Stefanie Houwaart,
  • Otmar Kodalle,
  • Joachim Weis

摘要

In recent years, oncological research has made significant progress improving treatment outcomes. Nevertheless, there is a growing recognition that greater focus must be placed on the patient’s perspective, particularly with regard to quality of life and psychological coping. This article examines the integration of patient experience and knowledge into cancer research from a multi-stakeholder perspective, with a focus on self-help-oriented research.

The article examines the integration of patient experience and knowledge into cancer research from a multi-stakeholder perspective, with a focus on self-help-oriented research. Cancer self-help plays a prominent role in patient participation and representation. The involvement of self-help groups (SHGs) and self-help organisations (SHOs) can significantly improve the feasibility, quality and, in particular, patient relevance of oncological studies. However, the degree of participation of members from SHGs and SHOs in research projects can vary greatly, from research without, to research with, or even research by self-help. The participatory and thus cooperative, joint and equal research represents the most democratic approach and is considered optimal. This results in various advantages for the directly and indirectly involved interest groups, such as researchers, patients and their relatives, healthcare professionals and care facilities, health and pension insurance funds, and society. However, self-help-oriented research is not without its prerequisites. The last part of the article discusses the conditions that promote success and the existing barriers to successful cooperation between research and self-help.