Integrating patients into meaningful real-world research

Abstract

Research in respiratory, sleep, and critical care medicine has historically been the domain of scientists and clinicians attempting to understand pathophysiological mechanisms and consequences of disease in an effort to develop effective treatments. This traditional approach of placing scientific rigor before the patient's reality is changing. There is growing recognition of the importance of integrating patient perspectives (e.g., preferences, expectations, and expanded definitions of what constitutes "successful" outcomes) into clinical research to achieve meaningful results for a broader group of stakeholders. This evolution is reflected in the growth of patient-centered organizations and patient advocacy groups that seek to meaningfully integrate patients into the process of prioritizing research needs and creating alliances wherein patients and researchers can partner together to accomplish research goals. In tandem, a growing number of real-world trials (i.e., those with broader, more representative patient populations and routine care pathways) now complement findings from traditional randomized controlled trials and offer new opportunities to design studies that better reflect patients' healthcare preferences and experiences. Patients' perspectives are key determinants of treatment adherence and outcomes, as well as the feasibility and likely value of implementing care pathways. The advent of smartphone and push technologies offer new opportunities for the collection of more patient-centered and ecologically valid patient data, thereby adding new dimensions to meaningfully integrate patients into real-world research.