From engagement to evidence: a scoping review of qualitative and quantitative measures of adult patient engagement in research

Patient engagement in research has been found to improve the quality and relevance of research findings. Quantifying levels of patient engagement may be beneficial in measuring engagement quality, yet tools for this purpose remain scarce. A scoping review was conducted to summarize and analyze existing tools used to measure patient engagement in research for the purpose of assessing the content validity of Hamilton et al.’s Patient Engagement In Research Scale (PEIRS). The electronic database Ovid MEDLINE was used to conduct a search related to keywords and controlled vocabulary from 2017 - November 10, 2023, in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews checklist. Articles were included if they quantitatively or qualitatively measured any outcome of patient engagement in research, exclusively with patients as participants. Data extraction, completed in Microsoft Excel, included the name of the research engagement tool, the type of tool (i.e., questionnaire, survey, or scale), sample size, source, and characteristics, and time frame of data collection. Five articles were ultimately included in this scoping review after an initial search returned 1719 citations. The most common reason for exclusion during the full text review stage was that articles were review articles. Of selected articles that included demographic data, the majority of participants were women and White. Articles highlighted areas for improvement in existing tools, including the need for patient collaboration at each stage of the research process and stronger communication between researchers and patient partners. Efforts to effectively measure patient engagement in research remain scant. Included studies were limited by inconsistency in defining “patient engagement” and a lack of demographic data collection. Involving patients in research beyond the role of a traditional study participant has been found to lead to more relevant research outcomes and better quality of care. Measuring patient engagement impact in research would allow researchers the ability to evaluate the success of their initiatives. The current study seeks to identify existing tools that were created for the purpose of measuring patient engagement in research. This was done by reviewing recently published articles to find any that created or evaluated tools for measuring levels of patient engagement. Five publications were found and included in this review. Shortcomings of existing tools are a lack of diversity among patient partners, weak communication between patients and researchers, and insufficient opportunities for patients to collaborate at all stages of the research process.