On this page, you will find the KOMPART project description. You can find the KOMPART course and the course registration here (in German).

Building patients' competencies for active engagement in health research

Background / Rationale

Active engagement of patients and their representatives in the planning and conduct of clinical trials has become a recognized feature of responsible health research and has been incorporated into key standards and guidelines. Early involvement can align research more closely with the needs of those affected, thereby improving the relevance, acceptance, and feasibility of clinical trials. For an effective contribution of patients and their representatives, who are experts by experience, it is important that they gain an understanding of the framework and requirements of clinical trials and develop an awareness of their possible roles. There is a growing importance of and demand for patient engagement – at the project level as well as in committees and review processes. However, structured, independent, and disease-spanning qualification programs that specifically prepare patients for an active role in academically initiated clinical trials remain largely absent. KOMPART aims to address this need.

Objectives

KOMPART develops, pilots, and evaluates a target group-specific training program that strengthens the engagement of patients and their representatives, particularly in the context of academically driven clinical research.

Methodology

The program is developed in a participatory process with relevant stakeholder groups and a transdisciplinary advisory board, and refined iteratively. It will be offered online, making it accessible nationwide regardless of disease or patient group. The pilot will be conducted with approximately 20–25 participants. A three-stage evaluation will assess module quality, transfer conditions, and implementation outcomes.

Expected Results / Implications / Perspectives

The project will produce a sustainable, scalable training resource that empowers patients and their representatives to engage meaningfully in academic clinical research. The modular design enables future expansion with disease-specific content. Results will be shared across relevant partner networks; a sustainability concept including continuation from 2027 onward is planned.

Project Advisory Board (in alphabetical order)

  • Project Advisory Board (in alphabetical order)

    Dr. Martin Danner
    BAG SELBSTHILFE (Bundesarbeitsgemeinschaft Selbsthilfe)

    Dr. Susanne Döpfmer
    Charité – Universitätsmedizin Berlin
    Institut für Allgemeinmedizin, RESPoNsE Forschungspraxennetz Berlin–Brandenburg–Thüringen

    Dr. Gabriele Dreier
    Universitätsklinikum Freiburg
    Zentrum Klinische Studien (ZKS)

    Dr. Claudia Grehn
    Charité-BIH Clinical Study Center (CSC)
    CSC Innovations

    Juergen Grunert
    Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V.

    Dr. Claire Iannizzi
    Universität Köln
    Institut für Öffentliches Gesundheitswesen (Uniklinik Köln), Stellvertretende Leitung; Cochrane Evidence Synthesis Unit Germany

    Dr. Christopher Kofahl
    Universitätsklinikum Hamburg-Eppendorf (UKE)
    Zentrum für Psychosoziale Medizin, Institut für Medizinische Soziologie

    Dr. Cindy Körner
    Nationales Centrum für Tumorerkrankungen (NCT)
    PEAK Akademie / NCT Begleitforschung / NCT Patientenbeteiligung

    Dr. Silke Lipinski
    Deutsches Zentrum für Psychische Gesundheit (DZPG)
    Center for Patient and Public Involvement (PPI)

    Dr. Steffen P. Luntz
    Universitätsklinikum Heidelberg
    Koordinierungszentrum für Klinische Studien (KKS)

    Dr. Margarete Scherer
    Universitätsmedizin Frankfurt; Netzwerk Universitätsmedizin (NUM)
    NUM Community Platform, Fachnetzwerk Infektionen

    Anika Schlaud
    Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V.

    Dr. Tanja Schmitz-Hübsch
    Charité – Universitätsmedizin Berlin
    Institut für Medizinische Immunologie / Experimental and Clinical Research Center (Kooperation Charité & MDC)

    Dr. Aline Weis
    Nationales Centrum für Tumorerkrankungen (NCT)

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