Patient Science ? Patienten schaffen Wissen. Ein bürgerwissenschaftlicher Ansatz mit hohem Maß an Partizipation zur Stärkung der aktiven Beteiligung von Patient_innen und Angehörigen in der Gesundheitsforschung.

Autor/inn/en	Gardecki, Johanna; Heyen, Nils B.; Eickmeier, Olaf; Bratan, Tanja; Eidt-Koch, Daniela; Schlangen, Miriam; Pauly, Sophie; Wagner, Thomas O. F.
Titel	Patient Science ? Patienten schaffen Wissen. Ein bürgerwissenschaftlicher Ansatz mit hohem Maß an Partizipation zur Stärkung der aktiven Beteiligung von Patient_innen und Angehörigen in der Gesundheitsforschung. Gefälligkeitsübersetzung: Patient Science ? Patients Create Knowledge. A Participatory Approach With a High Level of Involvement to Strengthen the Active Commitment of Patients and Their Families in Health Research.
Quelle	In: Kindheit und Entwicklung, 35 (2026) 1, S. 22-33Infoseite zur Zeitschrift PDF als Volltext Link als defekt meldenVerfügbarkeit
Sprache	deutsch
Dokumenttyp	online; gedruckt; Zeitschriftenaufsatz
ISSN	0942-5403; 2190-6246
DOI	10.1026/0942-5403/a000500
Schlagwörter	Wissen; Familienangehöriger; Eltern; Zystische Fibrose; Chronische Krankheit; Gesundheitswesen; Mitwirkung; Methodologie; Citizen Science; Erfahrungsniveau; Chronisch krankes Kind; Forscher; Klient; Patient
Abstract	Theoretical Background: For a long time, patients served primarily as data sources in health research and had a low level of active participation in the research process. As part of the pilot project ?Patient Science ? Patients Create Knowledge,? a cooperative research team consisting of patients, the parents of chronically ill children, and professional scientists jointly conducted a study. This article summarizes the main approaches and experiences emanating from that project. Objective: The goals of the project were, first, to enable the highest level of participation for patients and parents in all phases of the research process and, second, to identify the potentials and limitations of patient science as a specific participatory format. Method: 12 patient scientists (PS) together with eight professional scientists conducted a citizen science study regarding cystic fibrosis. The PS were actively involved in all phases of the research project. Results: The patient-science approach enabled a patient-centered approach and questionnaire design that addressed patients' needs. Discussion and conclusion: Patient science is a citizen science approach to health research that enables patients and their families to participate at a high level in the research process. Since this approach recognizes and systematically utilizes the knowledge of patients and their relatives as relevant expertise, the results obtained reflect their reality and are of high practical relevance. They have the potential to make a decisive contribution to improving healthcare. (ZPID).
Erfasst von	Leibniz-Institut für Psychologie, Trier
Update	2026/3