Table 2 Examples of research supported by the Office of Patient Engagement in Research Activities (OPERA)

Operating Room Black Box Research Program

During a 12-month implementation period, the team conducted 23 stakeholder engagement activities with over 200 participants

Fifteen patients and 17 perioperative clinicians were interviewed, which identified key themes to include in an information campaign run as part of the implementation process. Two patient partners were engaged and advised on communications as well as grant and protocol development [38, 39]

Getting better outcomes with chimeric antigen receptor T-cell therapy (GO-CART) program

Chimeric antigen receptor (CAR) T-cell therapy is a class of personalized treatment for blood cancers, where some of a patient’s own T-cells are removed, genetically modified in a laboratory to specifically target and kill cancer cells, then re-administered to the patient. The team led an early phase clinical trial to assess the safety and effectiveness of a novel CAR-T treatment for resistant blood cancer

Given evidence that patient partners may improve the development and conduct of clinical trials, the team applied a novel integrated knowledge translation (iKT) approach to engage patients (from inception) in the development of the CAR-T cell therapy phase I/II clinical trial protocol to ensure that clinical trial processes and resources were aligned with patient needs [26]

PREDICT app

The team developed the Personalized Risk Evaluation and Decision Making in Preoperative Clinical Assessment (PREDICT) app, a tablet application that was calibrated to local data, followed best practices for risk communication, and leveraged surgery patients’ ability to provide and receive their own health information

Patients gained knowledge of personalized risk of adverse events and reported improved satisfaction after elective surgeries [40]