The QUEST 1,000 € Patient & Stakeholder Engagement Award

Foster the involvement of patients and other stakeholders in the research process!

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. 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.

QUEST is offering this award of 1,000 € to first/last/corresponding BIH or Charité authors (and employees) of papers published from 2017 onwards.
Prizes can be spent until the end of 2023. Awards are given on an ongoing basis. Awardees will be featured on the QUEST web pages.

Funded 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).

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