OBJECTIVES

Lack of clarity on the meaning of “patient engagement” has been highlighted as a barrier to implementing engagement in research. A previous review of the literature identified over 200 distinct definitions related to this topic. This study seeks to identify themes within these definitions, particularly concepts unique to engagement in research.

METHODS

Qualitative content analysis was conducted on definitions related to the concept of patient engagement (previously identified via systematic review). Open coding on a 30% random sample of definitions generated a preliminary codebook, which was pilot tested before completion. Coders worked in teams of two, with definition review divided between three teams. In cases of differential coding, a third reviewer proposed a consensus. Codes were examined thematically and using descriptive statistics.

RESULTS

A total of 239 definitions were assessed. The most frequently defined terms were “Patient Centered” (30.5%), “Patient Engagement” (15.5%), and “Patient Participation” (13.4%). The majority of definitions were specific to the healthcare setting (72.4%); 9.6% were specific to research. Among definitions of “Patient Engagement”, the three most frequent themes were “active process”, “patient involvement” and “patient as participant”. In comparison, the top themes among other defined terms were “patient as participant”, “incorporate patient preferences” and “shared decision-making”. In the research setting, the most frequent themes were “patient involvement”, “patient as partner” and “collaboration”; none of these appeared in the top three themes of non-research definitions. The most frequent procedural stages referenced by definitions were “In Practice/Care” (65.7%) and “Design/Planning” (12.6%). The research setting had the highest proportion of engagement across "all stages" (34.8%).

CONCLUSIONS

Though overlap exists, themes associated with the term “Patient Engagement” differ from those of similar terms, suggesting that interchangeable use is inappropriate. Findings from this study provide an opportunity to move forward towards a focused definition of patient engagement in research.