The QUEST Center supports the active engagement of patients and other stakeholders in health research (preclinical, clinical or health care research). So far, efforts to engage patients and other interest groups have unfortunately been limited in Germany, but current calls for funding proposals increasingly request the active involvement of patients and other stakeholders in the research process.

The relevance and usefulness of research for those affected can be increased if the views and needs of patients and other stakeholders in the health care system are taken into account. These stakeholders may have diverse expectations of health research and may set different priorities than the scientists. Patients and their relatives have a different view of their medical condition or the medical condition of their relative. Therefore, they can provide insights that would otherwise remain hidden from the researchers. In addition, certain outcomes may be particularly important to them – outcomes that scientists may not have thought of or that they consider less relevant.

By active engagement we do not mean the recruitment of patients as “participants/subjects” in clinical trials, or other quantitative or qualitative (interview) studies. Active involvement or engagement means that patients or other stakeholders (e.g. relatives) have had a say in the planning, execution or analysis, or that they were actively involved in the dissemination of study results. Type and extent of engagement must be evident from the publication - ideally, you use the already established GRIPP2 Reporting Guideline. Terminology and concepts in the field of patient engagement are not standardized – they can be found under terms such as "participatory (health) research", "patient and public involvement", "patient-oriented research" or "public and patient engagement". For this reason, diverse forms of engagement can be awarded, which will be evaluated after submission.

Here you can find more information on patient & stakeholder engagement.

Information for your application

  • The QUEST center is offering this award of 1,000 € to first/last/corresponding BIH or Charité authors (and employees) for studies in which patients and other stakeholders are activly involved in the research process.
  • Papers published in the last two years are accepted (this includes the whole year – e.g., for a submission in March 2025, all articles published in 2023, 2024, or 2025 are eligible).
  • Prizes can be spent until the end of 2027. Awards are given on an ongoing basis.
  • Only one QUEST Prize can be awarded per publication.
  • Authors can apply (with different publications) only once per year per prize (i.e. maximum 5 prizes per year per author).
  • Publications of authors (independent of the author´s position) which are also QUEST employees cannot be considered.
  • Awardees will be featured on the QUEST web pages.

To apply for the award, please fill out the registration form that you can find here. 

Awarded publications

  • Awarded publications
    1. The publication Effectiveness of app-based self-acupressure for women with menstrual pain compared to usual care: a randomized pragmatic trial receives a QUEST Patient & Stakeholder Engagement Award. Young women with menstrual pain were actively involved already in the planning phase of the study and they had substantial influence on the design and protocol. Stakeholder engagement ensured that the intervention fits to the needs of the target group. This article was published in 2018 in the American Journal of Obstetrics & Gynecology (DOI: 10.1016/j.ajog.2017.11.570). Applicant: Daniel Pach, Institute for Social Medicine, Epidemiology and Health Economics, Research group Complementary and Integrative Medicine, Charité-Universitätsmedizin Berlin
    2. The publication The Value of Treatment Processes in Germany: A Discrete Choice Experiment on Patient Preferences in Complementary and Conventional Medicine receives a QUEST Patient & Stakeholder Engagement Award. The aim of the study was to assess patients' preferences and willingness to pay regarding the treatment process. Stakeholders (patients, physicians and scientist) defined the attributes of the treatment process which were most relevant for them. These attributes were used in the subsequent study. This article was published in 2019 in the journal "The Patient - Patient-Centered Outcomes Research" (DOI: 10.1007/s40271-018-0353-1). Applicant: Thomas Reinhold, Institute for Social Medicine, Epidemiology and Health Economics, Health Economics and Health Systems Research Unit, Charité – Universitätsmedizin Berlin
    3. The publication Evidence on User-Led Innovation in Diabetes Technology (The OPEN Project): Protocol for a Mixed Methods Study receives a QUEST Patient & Stakeholder Engagement Award. The protocol describes a user-driven research project on the clinical effectiveness and quality-of life benefits of "Do-It-Yourself Artificial Pancreas Systems" (DIYAPS) for people living with diabetes. The majority of members of the research team live with type 1 diabetes and are active DIYAPS users. The article was published in 2019 in the journal "JMIR Research Protocols" (DOI: 10.2196/15368). Applicant: Katarina Braune, Department of Paediatric Endocrinology and Diabetes, Charité – Universitätsmedizin Berlin
    4. The publication Student participation in the development of interprofessional education courses: Perceptions and experiences of faculty members and the students receives a QUEST Patient & Stakeholder Engagement Award. The article describes the active involvement of students in interprofessional course development and the perceived influence they had on the process. This article was published in 2019 in the journal "Medical Teacher" (DOI: 10.1080/0142159X.2019.1638895). Applicant: Ronja Behrend, Dieter Scheffner Fachzentrum, Charité – Universitätsmedizin Berlin
    5. The publication Implementation of Intentional Touch for Geriatric Patients with Chronic Pain: A Qualitative Pilot Study receives a QUEST Patient & Stakeholder Engagement Award. The intervention "InTouch" was developed by different stakeholder (nurses, patients, scientists, and experts in therapies working with physical touch). This article was published in 2019 in the journal "Complementary Medicine Research" (DOI: 10.1159/000496063). Applicant: Barbara Stöckigt, Institute for Social Medicine, Epidemiology and Health Economics, Charité - Universitätsmedizin Berlin
    6. The publication Training Oncology Physicians to Advise Their Patients on Complementary and Integrative Medicine: An Implementation Study for a Manual-Guided Consultation receives a QUEST Patient & Stakeholder Engagement Award. The paper describes the development and pretesting of a consultation framework for oncologists advising their patients on complementary and integrative medicine during cancer treatment. Stakeholders like oncology physicians and patients were involved in different steps of the consensus process during the development. This article was published in 2020 in the journal "Cancer" (DOI: 10.1002/cncr.32823). Applicant: Alizé Rogge, Institute for Social Medicine, Epidemiology and Health Economics, Research group Complementary and Integrative Medicine, Charité – Universitätsmedizin Berlin
    7. The publication Defining Criteria for Guiding Cancer Patients to Find a Reputable Complementary Medicine Provider: Results of a Literature Review and a Consensus Procedure receives a QUEST Patient & Stakeholder Engagement Award. The paper describes the development and evaluation of a comprehensive list of criteria guiding cancer patients to find a reputable provider of complementary medicine (CM). Stakeholders like CM providers, cancer patients, oncology physicians and experts from different backgrounds were actively involved in this process. This article was published in 2020 in the journal "Patient Preference and Adherence" (DOI: 10.2147/PPA.S230705). Applicant: Claudia Witt, Institute for Social Medicine, Epidemiology and Health Economics, Research group Complementary and Integrative Medicine, Charité – Universitätsmedizin Berlin
    8. The publication Co-Creating a Virtual Alcohol Prevention Simulation with Young People receives a QUEST Patient & Stakeholder Engagement Award. The paper describes the different steps of a co-creation process between researchers, practitioners, students and other stakeholders in the development of a virtual alcohol prevention stimulation for young people. This article was published in 2020 in the journal "International Journal of Environmental Research and Public Health" (DOI: 10.3390/ijerph17031097). Applicant: Christiane Stock, Institute of Health and Nursing Science, Charité – Universitätsmedizin Berlin
    9. The publication Measuring importance of outcomes to patients: a cross-sectional survey for the German anal cancer guideline receives a QUEST Patient & Stakeholder Engagement Award. The paper describes a strategy to measure the relative importance of outcomes to patients with different stages of anal cancer. The study was conducted in close cooperation with a patient representative of a Guideline Development Group who also helped with recruitment. This article was published online in 2020 in the "Journal of Clinical Epidemiology" (DOI: 10.1016/j.jclinepi.2020.09.026). Applicant: Ricardo N. Werner, Department of Dermatology, Venereology and Allergology, Division of Evidence-Based Medicine (dEBM), Charité – Universitätsmedizin Berlin
    10. The publication Association between sarcopenia, physical performance and falls in patients with rheumatoid arthritis: a 1-year prospective study receives a QUEST Patient & Stakeholder Engagement Award. The study aimed to identify risk factors for falls related to sarcopenia and physical performance in patients with rheumatoid arthritis. Two patient research partners were involved throughout the research process: they provided input on the research questions and study process, commented on the results, and were co-authors of the awarded publication. In addition, they wrote an own article about their experiences as patient research partners. The awarded publication was published in 2021 in the journal "BMC Musculoskeletal Disorders" (DOI: 10.1186/s12891-021-04605-x). Applicant: Roswitha Dietzel, Centre for Muscle and Bone Research, Charité – Universitätsmedizin Berlin
    11. The publication Burden of disease in myasthenia gravis: taking the patient’s perspective receives a QUEST Patient & Stakeholder Engagement Award. The study investigated the burden of disease of patients with myastenia gravis, a rare autoimmune disease. The patient organisation German Myasthenia Association was actively involved in the study design to ensure that the questions asked were relevant for patients. They also helped with recruitment of participants, and results were presented in their membership magazine "DMG-Aktuell". The awarded publication was published in 2021 in the Journal of Neurology (DOI: 10.1007/s00415-021-10891-1). Applicant: Sophie Lehnerer, Department of Neurology with Experimental Neurology, Charité – Universitätsmedizin Berlin
    12. The publication Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD receives a QUEST Patient & Stakeholder Engagement Award. The publication describes the protocol for the evaluation of an education programme for people with differences in sexual development and their parents. Patient support groups were already involved in the application of the project and – as cooperation partners – work together with researchers and healthcare providers throughout the project and the development of the education programme. The awarded publication was published in 2022 in BMC Endocrine Disorders (DOI: 10.1186/s12902-022-01079-3). Applicant: Sabine Wiegmann, Department of Pediatric Endocrinology and Diabetology, Charité – Universitätsmedizin Berlin
    13. The publication Participatory development and implementation of inclusive digital health communication on COVID-19 with homeless people receives a QUEST Patient & Stakeholder Engagement Award. The publication describes the participatory development, implementation and evaluation of inclusive health communication on COVID-19 with and for people experiencing homelessness (PEH). Sixteen PEH were actively involved in the project and had decision-making power. The awarded publication was published in 2022 in Frontiers in Public Health (DOI: 10.3389/fpubh.2022.1042677). Applicant: Anabell Specht, Institute of Tropical Medicine and International Health, Charité – Universitätsmedizin Berlin (CVK), Dr. Andreas Lindner, Institute of Tropical Medicine and International Health, Charité – Universitätsmedizin Berlin (CVK)
    14. The publication Determinants of COVID-19 vaccine acceptance and access among people experiencing homelessness in Germany: A qualitative interview study receives a QUEST Patient & Stakeholder Engagement Award. The aim of the study was to identify factors that influence access to and acceptance of COVID-19 vaccination among people experiencing homelessness (PEH). Twelve PEH, who were not part of the interview sample, participated in a group meeting to discuss preliminary results with the first author of this publication. This helped to focus further analyses on topics that were of particular relevance for PEH. The awarded publication was published in 2023 in Frontiers in Public Health (DOI: 10.3389/fpubh.2023.1148029). Applicant: Julianna Grune, Institute of General Practice and Family Medicine, Charité – Universitätsmedizin Berlin
    15. The publication Older adults’ suggestions of research topics on ageing well in urban environments – A participatory study receives a QUEST Patient & Stakeholder Engagement Award. The article describes a participatory research project that was conducted in collaboration with older citizens living in Berlin: they identified and prioritized research topics on ageing well in urban environments. Many of the identified topics have a focus on experiences that older citizens have in their daily lives. These findings can service as a base for future research. The awarded publication was published in 2023 in PLOS ONE (DOI: 10.1371/journal.pone.0292214). Applicant: Philip Oeser, Institute of General Practice and Family Medicine, Charité - Universitätsmedizin Berlin
    16. The publication Establishing Patient-Centered Outcomes for MCT8 Deficiency: Stakeholder Engagement and Systematic Literature Review receives a QUEST Patient & Stakeholder Engagement Award. The article describes the active engagement of families who take care of children affected by the ultra-rare disease Allan-Herndon-Dudley syndrome (AHDS)/MCT8 deficiency in the development of a patient-oriented outcome questionnaire. These families also helped with the recruitment for the following survey. Results show that gross motor milestones were most important to the families, while paraclinical aspects were least important. The researchers suggest that these results should be taken into account in future therapeutic trials. They can also be addressed in the treatment plans of the affected children and their families. The awarded publication was published in 2023 in Neuropsychiatric Disease and Treatment (DOI: 10.2147/NDT.S379703). Applicant: Nina-Maria Wilpert, Department of Pediatric Neurology, Charité - Universitätsmedizin Berlin
    17. The publication Utilization and costs of health care and early support services in Germany and the influence of mental health burden during the postnatal period receives a QUEST Patient & Stakeholder Engagement Award. The study assessed determinants of health care and early support services utilization among mothers and their children in the postnatal period, and the associated costs. Different stakeholders, e.g., local authorities, workers in the field, and health insurance companies, were actively involved to estimate these costs, since this field is very heterogeneous without a standardized fee scale. This involvement was essential to provide a realistic appraisal of the costs. The awarded publication was published in 2023 (online first) in Children and Youth Services Review (DOI: 10.1016/j.childyouth.2023.107373). Applicant: Benjamin Kaß, Institute of Social Medicine, Epidemiology and Health Economics, Charité – Universitätsmedizin Berlin
    18. The publication SARS-CoV-2 infections in professional orchestra and choir musicians—a prospective cohort study receives a QUEST Patient & Stakeholder Engagement Award. The study did not indicate an increased risk of SARS-CoV-2 infections in orchestra musicians, but a trend towards increased risk in choir singers compared to controls. Berlin-based professional orchestras and choirs were actively involved in the planning and development of the study. In addition, they helped to design survey instruments and to recruit participants. The awarded publication was published in 2022 in the European Journal of Epidemiology (DOI: 10.1007/s10654-022-00917-x). Applicant: Anne Berghöfer, Institute of Social Medicine, Epidemiology and Health Economics, Charité – Universitätsmedizin Berlin
    19. The publication Proton Pump Inhibitor Use and Bone Health in Patients With Rheumatic Diseases: A Cross-Sectional Study receives a QUEST Patient & Stakeholder Engagement Award. A patient representative from the patient organisation Deutsche Rheuma-Liga was involved in the design and management of the study. In addition, it is planned to disseminate the results of the study though the involvement of patient organisations. The awarded publication was published in 2024 in the journal Mayo Clinic Proceedings (DOI: 10.1016/j.mayocp.2023.12.008). Applicant: Andriko Palmowski, Department of Rheumatology and Clinical Immunology, Charité – Universitätsmedizin Berlin
    20. The publication Veränderungen in der Bereitstellung und Inanspruchnahme der Gesundheitsversorgung in deutschen Hausarztpraxen während der COVID-19-Pandemie – eine Befragung von Patient*innen in drei Bundesländern receives a QUEST Patient & Stakeholder Engagement Award. The questionnaire that was used in this study was developed in close collaboration with the patient advisory board of the RESPoNsE research project and other patients. In addition, they helped with the interpretation of results. The awarded publication was published in 2024 in the journal Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen (ZEFQ) (DOI: 10.1016/j.zefq.2024.06.002). Applicant: Susanne Döpfmer, Institute of General Practice and Family Medicine, Charité – Universitätsmedizin Berlin
    21. The publication Satisfaction with a new patient education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents receives a QUEST Patient & Stakeholder Engagement Award. Four self-help groups were involved during the development, implementation, and evaluation of the curriculum of the education program. This article was published in 2024 in the journal PEC Innovation (DOI: 10.1016/j.pecinn.2024.100321). Applicant: Sabine Wiegmann, Institute of Social Medicine, Epidemiology and Health Economics, Charité – Universitätsmedizin Berlin
    22. The publication ‘That Sounds to Me Like You Are Making This Too Complicated …’: Reflections on a Social Media Recruitment Effort for a Study on Masculinities and Contraception receives a QUEST Patient & Stakeholder Engagement Award. In this article, the authors reflected on how the recruitment phase of a qualitative study could be used as an often overlooked opportunity for engagement with non-participants. Particular attention was given to the possibilities offered by social media to involve research-critical stakeholder groups in study design and to provide space for their doubts, discontent, and, in some cases, aggression. The feedback led to reconsidering the researchers’ recruitment strategies and study methods. This article was published in 2023 in the journal Qualitative Health Research (DOI: 10.1177/10497323231203631). Applicant: Julia Zielke, Institute of Medical Sociology and Rehabilitation Science, Charité – Universitätsmedizin Berlin
    23. The publication Hidradenitis suppurativa receives a QUEST PSE award. The publication addresses hidradenitis suppurativa (HS), a chronic inflammatory disease that causes painful skin alterations, and carries substantial physical and psychosocial burden. A patient representative did not only co-author and edit sections of the manuscript, but he also conveyed patients' experiences with symptoms and provided insights into living with HS that would otherwise have remained hidden from researchers. This article was published in 2025 in the journal Lancet (DOI: 10.1016/S0140-6736(24)02475-9). Applicant: Robert Sabat, Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin
    24. The publication Unmet needs of heart failure patients across the different domains of palliative care – a qualitative interview study receives a QUEST PSE award. Four members of the peer-support organization transplantiert e.V. were actively involved in revising the interview guide. More information about patient engagement in this project can be found here. This article was published in 2026 in the journal Heart & Lung (DOI: 10.1016/j.hrtlng.2026.102871). Applicant: Moritz Blum, Department of Cardiothoracic and Vascular Surgery, Deutsches Herzzentrum der Charité (DHZC)

Contact

QUEST Center

E-mail:
quest[at]bih-charite.de