In early 2019, while Lindsay Senese was recovering from surgery at Sunnybrook, she spotted a posting about patient engagement during one of her daily rehab walks around the postoperative unit. “When I saw that the Patient Family Advisory Council (PFAC) existed I was really heartened by the opportunity to have a place to speak up about my experience,” says Lindsay.
There were times in Lindsay’s treatment where she felt she couldn’t always make herself understood. “The act of speaking up for myself during treatment was ongoing and exhausting.” Lindsay, who works as a lawyer, says that although she’s used to engaging in difficult conversations, feels a certain dexterity in the English language, and has family who can help her navigate the medical system, she still struggled at times. “I can’t imagine how disempowering it would be to someone who doesn’t share the same educational, vocational, or linguistic privileges that I have,” says Lindsay.
After meeting with the Patient Family Advisory Council (PFAC) at Sunnybrook, Lindsay ended up connecting with Agnes Ryzynski, Director of the Sunnybrook Canadian Simulation Centre and at the time, Master’s in Translational Research Candidate at the University of Toronto.
“As part of a quality improvement initiative and for my master’s thesis, we were developing a new research project to improve the patient experience in the Pre-Anesthesia Clinic at Sunnybrook, says Agnes. The Pre-Anesthesia Clinic provides surgery patients with a pre-anesthesia assessment to determine their needs for before, during, and after surgery.
“Our initial needs assessment, indicated some patients didn’t fully understand the value or function of the clinic, and some felt unprepared due to not knowing what to expect,” says Agnes. The team wanted to better understand what patients needed, what they were lacking and how they could best provide that. With those questions, the patient-centered approach was born and Lindsay was brought on to serve as the patient advisor throughout the team’s research.
Agnes worked alongside fellow master’s students Raja Ravi and Andrew Wan on the project. Members of the project’s Advisory Team at Sunnybrook included Drs. Ed Etchells, Lesley Gotlib Conn, and Guna Budrevics.
Agnes described Lindsay’s role on the team as essential. As the group worked to develop a series of patient questionnaires and interviews to conduct their research, Lindsay provided feedback and insight into the patient experience at every step of the way. “I was able to fill in gaps and provide insights that a researcher might not have been able to because of what I’d learned through lived experience,” says Lindsay.
Agnes attributes much of the project’s success to Lindsay. “With the help of Lindsay, we were able to interview almost everyone we approached. Her feedback on our questions and interview style also enabled us to draw lots of richness from each interview in a very short amount of time.”
For Lindsay, the benefits were personal and professional. “It gave me renewed confidence in Sunnybrook. By and large, I was overwhelmed by the high quality of care I received there. Seeing first-hand how the patient experience is centred in assessing and refining how Sunnybrook delivers care was really heartening. Being able to contribute to that felt like a significant bright side to a medical crisis that was a really dark experience for me. I think having a voice in shaping [the] experience allows patients to maintain more of their humanity as they go through their treatment. It shifts their experience from something that is done to them to something that they have a role in creating.”
Lindsay, who works in refugee law, also says the experience gave her a renewed perspective on how she interacts with her own clients. “I’m often helping clients navigate a very specialized and confusing system that also has serious life-altering impacts. Seeing the way that Sunnybrook integrates patient feedback into its operational development has really shaped the way that I do that in my legal practice.”
Agnes, who successfully defended her master’s thesis in June, can’t thank Lindsay enough for her contributions. “The first part of our project was understanding the problem through research and our next step is to connect with staff and patients to implement design changes in the PAC experience. All the foundational work we have done with Lindsay will make this next step that much more successful.”