Patient engagement is increasingly being recognized as a critical component of health care and research(1); 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. The Ottawa Hospital (TOH) and the Ottawa Hospital Research Institute (OHRI) have developed a cross-institutional model to support patient engagement in clinical care and health research.
The Ottawa Patient Engagement in Research 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.
Development of this model has involved close collaboration between the Patient and Family Engagement Program at TOH, which is led by a full-time Patient and Family Engagement Lead and 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 (OPERA), also within the OHRI, which facilitates collaborations between patients, researchers, clinicians and other stakeholders.
The OPERA supports matching patient partners with researchers, providing training, conducting methodological research in the field of patient-oriented research and patient engagement, and evaluating patient engagement. Early success of this approach can be attributed to aligned institutional priorities between TOH, OHRI, and patients; the establishment of a patient engagement policy implemented in 2020; ongoing education and support provided to patient partners and researchers; and innovative recruitment, tracking and evaluation procedures.
The OPERA plays a key role in supporting patient engagement at TOH and OHRI by matching researchers with patients, families, and caregivers. Researchers seeking patient partners are able to submit an online request form to the OPERA, which co-ordinates an initial consultation and supports researchers to identify and work with patient partners. The OPERA also provides ongoing education for both patient partners and researchers, including informational seminars and helping researchers to onboard patient partners. As with other activities, patient and staff education initiatives actively include patients, families, and caregivers; for example, patients have participated in developing educational websites, creating a patient declaration of values, and presenting as patient teachers at institution-wide rounds. Patient partners who have worked with researchers are also involved in delivering lectures or conference presentations about those projects, and the OPERA helps to support the inclusion of patient partners. The OPERA also leads and engages with methodological research about patient-oriented research and patient engagement. Examples include a systematic review of patient engagement roles within clinical trials, case studies of patient engagement within an early-phase cancer treatment, developing engagement evaluation frameworks, and exploring the impact of patient engagement on research.
Monitoring patient engagement in research is paramount to understanding current strengths and identifying areas for improvement. Several initiatives at TOH and OHRI have been developed to provide these insights. First, data regarding the planned or ongoing involvement of patient partners is captured when researchers notify the institution of their intention to apply for research funding. Second, the Ottawa Health Science Network Research Ethics Board (OHSN-REB) has added fields about patient engagement to its research ethics application forms, which allows the OPERA to track patient engagement in research across clinical domains and time. By tracking these data, the OPERA can identify areas for training or support; for example, if patients are not being engaged in specific types of research or clinical areas. Finally, tools have been implemented to evaluate patient engagement in research, both from researcher and patient partner perspectives. Concerns and compliments are filed, reviewed, and followed up by the Patient and Family Engagement Lead.
As new tools and evaluation frameworks for patient engagement in research are developed, these will be reviewed by the OPERA team and patient partners to ensure that meaningful and useful results translate into improvements in patient engagement in research at TOH and OHRI.
The Ottawa Patient Engagement in Research Model represents a collaboration between researchers, clinicians, methodologists, patient engagement experts, research ethics board members, and patients and families. This model has established recognized infrastructure across clinical and research disciplines. It is intended to sustain an evidence-informed, comprehensive, and innovative approach to patient engagement in research at TOH and OHRI, and may provide a transferrable framework for other academic institutions engaging patients and families in health research.
------------------------------------------------------------
Shelley Vanderhout1,2, RD, PhD; Stuart Nicholls1, PhD; Dean Fergusson1,2,3, PhD
1 - Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, Box 201B, Ottawa, Ontario, K1H 8L6
2 - School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, Ontario, K1G 5Z3
3 - Department of Medicine, University of Ottawa, Roger Guindon Hall, 451 Smyth Rd #2044, Ottawa, ON K1H 8M5
Reference:
1. Canadian Institutes of Health Research. Strategy for Patient-Oriented Research, 2019. Accessed Feb 23, 2022. Available from: https://cihr-irsc.gc.ca/e/48413.html.
Contact:
Dr. Dean Fergusson
dafergusson@ohri.ca/613-737-8899 x 79842