Background/Purpose: The emergent practice of patients engaging in the conduct and decision-making aspects of health research has been accentuated in this decade. Its practice deems to improve the relevance, appropriateness, and knowledge translation of research by incorporating the patient perspective. However, systematic reviews (SRs) have highlighted a lack of common language across studies reporting this practice,[1, 2] making it challenging to examine the evidence in this area. To address this shortcoming, this study aimed to develop a taxonomy of patient engagement in research.

Methods: We systematically searched 6 electronic databases for relevant documents published January 1980 – July 2015. We also searched 4 key journals, reference lists, and the grey literature. Eligible documents were in English, with information relevant to patient engagement in research. We targeted theories, frameworks and models as well as SRs and commentaries related to the practice, to base our taxonomy. Content analysis was performed using 3 predetermined categories: 1) Who are the patients?; 2) How do patients engage?; and 3) When do patients engage?, that were formed based on prior readings. For example, one article emphasized that these 3 categories cover the context and process of patient engagement in research.[3] The first author reviewed, extracted, and organized the data under each category. The data was analyzed for unique descriptors, then combined into themes. The descriptors were then defined and their relationships explored.

Results: A total of 29 documents (21 frameworks/models, 4 SRs, 1 commentary, and 3 empirical studies) contributed descriptors to the taxonomy. Each document provided descriptors in some themes, but none provided descriptors in all themes. Some documents contributed to defining and explaining the interconnections of the descriptors. These documents included models of information flow and communication between patients/public and researchers, community/patient/public engagement continuum, and the division of control and power over the research process. The results, summarized in Table 1, contain the categories ‘Who?’ described by type of affiliation; ‘How?’ described by the initiation, mechanism, and degree of engagement; and ‘When?’ described by the stage of research cycle divided across three research phases.

Conclusion: This taxonomy presents descriptors for diverse forms of patient engagement in research. Researchers could use this taxonomy to select options of patient engagement in research to plan their studies, then use its descriptors to communicate the context-specific contributions of patients. Future research should validate this taxonomy. 1.            Shippee et al. Health Expect 18:1151-66,2015. 2.            Domecq et al. BMC Health Serv Res 14:1-9,2014. 3.            Esmail et al. J Comp Eff Res 4:133-145, 2015.