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.

Engaging patients in anesthesiology research: a rewarding frontier

“…Our approach to identifying patient partners leveraged our institutional infrastructure that facilitated the matching of patient partners with research teams 17 using an advertisement distributed through our hospital’s Patient and Family Engagement Program (PFEP), which involves > 200 patients who have volunteered to serve as advisors for clinical processes, policy decisions, and/or research. The advertisement included information regarding the proposed study area, ideal experience (lived experience of surgery and general anesthesia), and anticipated commitments.…”

“…Solutions were developed based on the context of perioperative medicine as well as locally available support and resources. 17 The SPOR principles, identified barriers, and implemented solutions are outlined in Table 1 . 20 – 24 …”

“…This type of approach was facilitated by our institution and through the Ontario SPOR Support Unit, of which our organization (Ottawa Hospital Research Institute) is an active member through the Ottawa Methods Centre. Our institutional structure is called the “Ottawa model.” 17 This model provides useful guidance on developing infrastructure and facilitating patient engagement in research. This structure also allowed us to have methodological support.…”

Coaching to strengthen critical success factors in integrative care for chronic fatigue patients: the Patient Needs-Resources Model

“…According to this model, the disease onset has a great influence on the patient's psychological functioning, and a better balance is expected to be produced among the three experiential dimensions implied in the health management process: think (cognitive level), feel (emotional level), and act (behavioral level) (Graffigna et al, 2014). Other models such as the Patient-derived Model of Patient Engagement via Patient and Family Advisory Councils (PFACs; Dukhanin et al, 2020), the "Ottawa Model" for patient engagement in research (Vanderhout et al, 2022), and Pre-screening Models for Patient Engagement: the MOPEAD project (Boada et al, 2020) are also used. However, it should be noted that, despite the methodological basis, the practical patient engagement process is slowed.…”

Exploring the outcomes of research engagement using the observation method in an online setting

“…There is a substantive body of work reporting the various ways in which patients are involved in the conduct and design of research,1–3 and various frameworks and guidelines for supporting, evaluating and reporting patient engagement (PE) in research 4 5. There are also studies showing the value of such engagement to the patient, such as a sense of purpose and being empowered; greater awareness of and appreciation for research; improved relationship with illness; feeling valued and gaining new skills and knowledge 6–8.…”