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<p>In order to make health and healthcare research patient centred, the perspectives and experiences of patients should be systematically taken into account. Patient involvement means that those affected contribute to the research process not as research subjects, but as experts with lived experience of illness and healthcare. How this contributes to patient-centredness is described by means of three aspects: patient involvement can help to ensure that (1)&#xa0;relevant research topics are addressed, (2)&#xa0;research processes are designed to suit participants, and (3)&#xa0;results are discussed together with patients.</p><p>In Germany, research funders and patient organizations are promoting the implementation of patient involvement. Both patients and researchers report positive experiences but also challenges. Research institutions can establish sustainable structures for this, as exemplified by the University Cancer Center Hamburg, where patients participate in advisory boards and act as ambassadors in cancer research.</p><p>Effective implementation requires not only appropriate structures but also knowledge. Practical guidelines, examples, and training opportunities can provide a&#xa0;basis for this. Equally important is transparent reporting in order to critically reflect on involvement processes. Scientific evaluation can examine how and under which conditions patients can meaningfully contribute to research projects and what impacts involvement has on patients, researchers, and patient centeredness as well as on the process and the results of research projects.</p>

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Patient:innenbeteiligung in der Gesundheitsforschung in Deutschland

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年1月14日

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  • Lena Oster,
  • Avin Hell,
  • Ines Moegling,
  • Anna Levke Brütt

摘要

In order to make health and healthcare research patient centred, the perspectives and experiences of patients should be systematically taken into account. Patient involvement means that those affected contribute to the research process not as research subjects, but as experts with lived experience of illness and healthcare. How this contributes to patient-centredness is described by means of three aspects: patient involvement can help to ensure that (1) relevant research topics are addressed, (2) research processes are designed to suit participants, and (3) results are discussed together with patients.

In Germany, research funders and patient organizations are promoting the implementation of patient involvement. Both patients and researchers report positive experiences but also challenges. Research institutions can establish sustainable structures for this, as exemplified by the University Cancer Center Hamburg, where patients participate in advisory boards and act as ambassadors in cancer research.

Effective implementation requires not only appropriate structures but also knowledge. Practical guidelines, examples, and training opportunities can provide a basis for this. Equally important is transparent reporting in order to critically reflect on involvement processes. Scientific evaluation can examine how and under which conditions patients can meaningfully contribute to research projects and what impacts involvement has on patients, researchers, and patient centeredness as well as on the process and the results of research projects.