Patients participating as co-researchers in health research: A systematic review of outcomes and experiences

Abstract

Aims: We aimed to map out the scope and type of health research studies with patients involved as co-researchers throughout the research process and to explore the outcomes and experiences of such research. Methods: We conducted a narrative review by systematically searching selected databases. A total of 1451 hits were identified and screened, and 17 studies were included and categorised by type of health problem, design, publication sources and modes of presentation. We conducted an inductive, iterative analysis of outcomes and experiences of patient involvement. Results: We identified two types of impact from studies with patients participating as co-researchers: (a) patient involvement as primary focus, where seven articles largely reported and reflected upon the shared experiences, and (b) patient involvement as strategy, where 10 articles presented results from empirical studies of specific health problems, with patient involvement used as a strategy to expand understanding. The first group of studies reported collaborative processes and resource investments, while the second group addressed specific health problems from a distinctive perspective due to patient involvement. Several studies in both groups repeated or confirmed positive values of user involvement rather than providing original findings. In both groups, methodological standards were often downgraded to provide access for the co-researchers. Conclusions: These articles, where the co-researcher model represents the contemporary superior level of patient involvement, may indicate that mere collaboration efforts are prioritised at the expense of knowledge outcomes and scientific quality. Collaboration formats other than participation as co-researchers may be necessary for patient involvement in medical research to add to the existing knowledge.