Working together to support patient partners in research

Figure 1. The Ottawa Hospital and Ottawa Hospital Research Institute are both engaged in the Office for Patient Engagement in Research Activity

Patient engagement at The Ottawa Hospital (TOH) is anything but ad hoc, with a well-organized, proactive Office for Patient Engagement in Research Activity (OPERA) that sits at the intersection of the hospital’s clinical side and research at The Ottawa Hospital Research Institute (OHRI). The office, led by Dr. Stuart Nicholls since 2020, provides support and methodological advice to researchers and patients, families, and caregivers but also links researchers and patients. Working with the Patient and Family Engagement Program at TOH, the OPERA team brings researchers and patient partners together to see if there is a good match of skills, interests and needs for patient involvement in research.

Figure 2. The Ottawa Hospital Patient and Family Engagement Program includes a number of Patient and Family Advisory Committees and activities that engage with patients, families and caregivers

Patient partners, which include family members and caregivers, have the opportunity to be involved in research and other clinical or policy activities. The program has grown from a single Patient and Family Advisory Committee (PFAC) in 2014 to the coordination of multiple PFACs in a range of clinical areas, as well as more than 200 patient advisors who work across the hospital:

“It’s pretty unique as it allows patient partners to be engaged in many ways and they can shape current care but also future care through research. It also provides that link to show that research is part of how we improve care.” says Dr. Nicholls.

He credits the office’s success to Dr. Dean Fergusson’s leadership in successfully integrating patient engagement and OPERA’s role into OHRI’s strategic plan to ensure ongoing support.

“This is huge for sustainability: it embeds patient engagement into the culture of research and care throughout the hospital and research institute,” he says.

A focus since Dr. Nicholls joined the OPERA office has been to embed data collection and monitoring of patient engagement activity. This has included collecting information about engagement at the time of grant development and submission, through the formal consultation requests, within submission to the Research Ethics Board, as well as monitoring publications for patient co-authorship. By capturing and monitoring this data, the OPERA team can understand how patients are being engaged across the research institute, as well as where engagement is happening. The most recent review of this data indicates that reported patient engagement has increased in both the pre-grant submissions and Research Ethics Board submissions, even where the OPERA office hasn’t been involved, suggesting a broader uptake and change in research culture across The Ottawa Hospital and Research Institute.

The OPERA office also undertakes its own research into topics important to patients, families and caregivers. A recent focus of their research is patient compensation in research, an area of major interest in the field of patient engagement.

“This is a topic that has galvanized people as the OSSU Interim Evaluation report has highlighted,” says Dr. Nicholls. “It’s an area where we can make a big impact and OSSU can be a leader on a national scale.”

Ultimately, Stuart credits OSSU with the support to start the patient engagement program which has evolved as OSSU has grown.

What’s next? The team continues to support researchers and patient partners and is actively developing the process for bringing patient partners and researchers together based on their feedback. It is also working with research teams to create standing advisory boards to operate across various projects, maintaining important relationships and providing continuity of patient partner input.