Identifying challenges and enablers to engaging patients in preclinical laboratory research: an interview study

Abstract

Abstract Background Patient engagement in research enriches study design, conduct, and dissemination by integrating lived experiences of patients into the research process. Although patient engagement is becoming more popular in clinical research settings, it remains comparatively rare in preclinical (i.e. laboratory based) research. To explore this gap, we conducted an interview study to understand how researchers and patients have implemented patient engagement in this area, focusing on the challenges and benefits of their approach. Methods We conducted semi-structured interviews of patients (n = 15) and researchers (n = 14) with previous preclinical patient engagement experience. Interviews were transcribed and reviewed using an inductive, thematic content analysis, which allowed for bottom-up analysis of interview data. Our team identified, reviewed and refined emerging themes. Our team members include preclinical, clinical and patient engagement researchers and patient partners, which allowed for various perspectives to contribute to the final interpretation of the findings and drafting of the manuscript. Results We identified five themes. Theme 1: Researchers and patients highlighted the necessity to adopt a thoughtful and tailored approach for each preclinical engagement initiative. This includes taking time to cultivate personal relationships and co-developing engagement activities to meet patient and researcher preferences and needs. Theme 2: Clear communication was deemed critical, suggesting the need for a clear and shared vocabulary without technical jargon. Theme 3: Varied goals for engagement in preclinical research between researchers and patients were underscored, indicating the need to discuss aims and motivations early and often as well as to co-develop mutually beneficial strategies. Theme 4: Researchers and patients also discussed how their communities require a better understanding of the value of preclinical patient engagement. This could be fostered through education and illustrative case examples. Theme 5: Finally, a shift in research culture was deemed necessary and called for stronger institutional support, efficient channels to connect preclinical researchers and patients, as well as initiatives that recognize and champion preclinical patient engagement. Conclusion Our study identified five common themes in preclinical patient engagement which can help the research community facilitate meaningful engagement of patients in preclinical laboratory research.Plain English summary Engaging patients as partners in clinical research, known as patient engagement, is a growing practice that has numerous benefits. However, uptake in preclinical laboratory research (e.g. cell and animal studies) has been limited. Nevertheless, incorporating patients as active collaborators at this discovery stage of biomedical research may be beneficial. To better understand how patient engagement fits into preclinical research, we conducted interviews with patient partners and preclinical researchers who have implemented this practice. Five key themes emerged. First, both groups emphasized the need for adopting a thoughtful and tailored approach since preclinical research is not typically patient facing. Second, shared vocabulary was important to facilitate communication. Third, setting clear expectations and outlining varied goals for engagement was considered critical. Fourth, understanding the value of preclinical research helped ground engagement efforts. Finally, interviewees felt a cultural shift is needed for this practice to be accepted more widely. These themes are important factors to consider when engaging patients in preclinical laboratory research; they may be used to inform and support future preclinical patient engagement efforts.