Facilitating and supporting the engagement of patients, families and caregivers in research: the “Ottawa model” for patient engagement in research

Abstract

Background Patient engagement is increasingly being recognized as a critical component of health research; however, institutional models for building infrastructure and capacity for patient engagement in research are limited. There is an opportunity to create reproducible and scalable models of patient engagement in research and share best and promising practices. Main body In this article, we describe the development and features of the framework for the Ottawa Patient Engagement in Research Model at The Ottawa Hospital (TOH) and the Ottawa Hospital Research Institute (OHRI). Key components of the model include: a Patient and Family Engagement Program at TOH, which recruits, educates, and supports patients, families and caregivers to engage in clinical care, governance, and research; the Ottawa Methods Centre within the OHRI, which leads methodological research and provides support to investigators for patient engagement and patient-oriented research at TOH; and the Office of Patient Engagement in Research Activities, also within the OHRI, which facilitates collaborations between patients, researchers, clinicians and other stakeholders. Early success of this model can be attributed to aligned institutional priorities between TOH, OHRI and patients, the establishment of a patient engagement policy, ongoing education and support provided to patient partners and researchers, and innovative recruitment, tracking and evaluation procedures. Ongoing challenges and next steps include promoting diversity among patient partners, implementing an equitable compensation policy, engaging patients across a variety of roles and research areas, and developing resources to expand and sustain this program. Conclusion This model represents a unique effort of patients, clinicians, researchers, and policymakers across disciplines and institutions to produce a harmonized strategy and infrastructure for meaningful collaboration with patients and families in health research, and capacity building in patient-oriented research.

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

“…The process of setting up transparent and fair criteria for engaging patient partners while attaining appropriate diversity and representation is a major gap. 14,47,88,121,134,135,155,190 Some initial efforts in this domain have occurred, 14,39,47,95,118,151,155 eg, using established patient engagement support units, 95,169,182 structured research educational programs for community members, 35,75,87 and volunteers most impacted by the disease/ condition, 26,45,52 particularly in mental health research. 95 However, investigating and optimizing these efforts for pain research remains an important priority.…”