Like threads in woven fabric, patient engagement is becoming firmly entrenched at The Ottawa Hospital.
“It is becoming part of the hospital’s DNA,” says Dean Fergusson, head of the Ottawa Methods Centre, OSSU’s Scientific co-Lead and a key advocate for patient engagement in research at The Ottawa Hospital. With about 200 patient advisors integrated clinically and in many research areas, the hospital is leading the way with a culture shift that embraces patient engagement.
Central to this culture change is CIHR’s Strategy for Patient-Oriented Research (SPOR) framework, combined with OSSU’s leadership in moving the bar for researchers.
“SPOR provided a formal structure for patient engagement in research at The Ottawa Hospital,” says Zarah Monfaredi, SPOR Program Facilitator, Ottawa Methods Centre. “OSSU and SPOR gave the foundation for us to support research teams engaging with patients for the first time. When teams are looking for examples of engagement in practice, OSSU’s IMPACT awards are fantastic case studies to share.”
A key partner is Claudia Hampel, the hospital’s first full-time patient engagement manager. She and Zarah work together to break down silos, integrating patient engagement into clinical and research activities, using a framework codesigned by the Patient and Family Advisory Council (PFAC) along with Zarah and the previous manager.
Support at the senior level has been critical to the team’s success.
“We also had full senior leadership approval of the program with board approval of the patient engagement framework,” says Claudia. “Everyone is dedicated to it at the senior level.”
Over the next two years, Claudia will support staff to adopt SPOR principles, with patient and family advisors helping staff to become comfortable in engaging patients in research.
- Policy – creation of a formal patient engagement research policy.
- Ethics – all research ethics applications ask if, and how, the project is engaging patients in research.
- Medical Records – patient electronic medical records now include the question “Would you like to be involved in helping research define, develop and conduct research studies at The Ottawa Hospital (TOH) or The University of Ottawa Heart Institute (UOHI)?”
- Patient councils – a large corporate PFAC consults on major projects like the hospital’s new campus development project and EPIC, the hospital’s new digital health system, and quality improvement. Smaller councils focus on mental health, renal disease, weight management and more.
- Research projects – patients are involved in diverse research areas, such as MyPathology Report project to help patients understand pathology reports, the OR Black Box® project, stem cell research and more.
Thanks to CIHR’s investment and OSSU’s network of expertise, The Ottawa Hospital has become a leader in patient engagement in research in Ontario.
“There is this incredible support system in our province and we are so lucky to have it,” says Zarah.
- Ottawa Methods Centre patient engagement resources
- The OR Black Box project
- GO CAR-T blood cancer treatment clinical trial
- MyPathology Report website