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Background and objective <p>The involvement of patients in research, committee, and healthcare work is gaining increasing importance. As part of the ONCOnnect collaborative project (funded by German Cancer Aid), a&#xa0;systematic assessment of educational offers and participation formats for patients was conducted for the first time in all 26&#xa0;comprehensive cancer centers (CCCs) in Germany.</p> Materials and methods <p>Between November&#xa0;21, 2024, and January&#xa0;17, 2025, an online survey was conducted via REDCap including up to 59&#xa0;(path-dependent) questions. Data were collected on educational offers, training programs, and patient participation. The data were analyzed using descriptive statistics.</p> Results <p>General educational offers for patients are well established across all centers: all sites organize events, 92% host patient days, 88.5% provide an online information platform, and 84.6% offer printed materials. Four structured training programs that met the study’s criteria were found to be established at individual CCCs: one is implemented across five centers, while three are center specific. All four programs address participation, research, and self-help; only one is offered in both in-person and hybrid formats. While 96% of CCCs have patient advisory boards, only 34% of patient representatives receive compensation for this role, with significant variation in payment amounts.</p> Conclusion <p>Training programs to support active patient involvement have not yet been comprehensively implemented across CCC sites. Standardized compensation and better integration of site-specific and cross-site training programs could structurally strengthen patient participation and adequately acknowledge the associated effort.</p>

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Patient:innenbeteiligung und edukative Angebote

  • 期刊论文

  • 发表日期：

    2025年10月22日

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  • Jonathan Engelke,
  • Avin Hell,
  • Marian Breuling,
  • Lisa Schlüter,
  • Rainer Bredenkamp,
  • Isabelle Scholl,
  • Carsten Bokemeyer

摘要

Background and objective

The involvement of patients in research, committee, and healthcare work is gaining increasing importance. As part of the ONCOnnect collaborative project (funded by German Cancer Aid), a systematic assessment of educational offers and participation formats for patients was conducted for the first time in all 26 comprehensive cancer centers (CCCs) in Germany.

Materials and methods

Between November 21, 2024, and January 17, 2025, an online survey was conducted via REDCap including up to 59 (path-dependent) questions. Data were collected on educational offers, training programs, and patient participation. The data were analyzed using descriptive statistics.

Results

General educational offers for patients are well established across all centers: all sites organize events, 92% host patient days, 88.5% provide an online information platform, and 84.6% offer printed materials. Four structured training programs that met the study’s criteria were found to be established at individual CCCs: one is implemented across five centers, while three are center specific. All four programs address participation, research, and self-help; only one is offered in both in-person and hybrid formats. While 96% of CCCs have patient advisory boards, only 34% of patient representatives receive compensation for this role, with significant variation in payment amounts.

Conclusion

Training programs to support active patient involvement have not yet been comprehensively implemented across CCC sites. Standardized compensation and better integration of site-specific and cross-site training programs could structurally strengthen patient participation and adequately acknowledge the associated effort.