Yvonne Niwahereza Jele and Marie Pinard

Story by:

Liz Beddall

Learning from Experience

Patients and community members creating a better hospital

If you walk into Women’s College Hospital’s (WCH) Crossroads Refugee Health Clinic, you likely won’t notice the small space that separates the patient queue from the registration desk.

Yet the deliberately observed gap—meant to instill a sense of security in patients who might feel especially protective of their identification documents—never goes unnoticed by Yvonne Niwahereza Jele, the Crossroads Clinic patient responsible for the implementation of this hospital protocol through her participation in WCH’s new Experience Advisor program.

“I come from a society where my voice did not matter,” says Jele, who arrived in Canada as a refugee from Uganda in 2016. “Providing my feedback as an Experience Advisor and seeing my ideas come to life has made me feel special and made me feel heard—like a valued patient within the healthcare system.”

Since its launch in the fall of 2018, the Experience Advisor initiative has enlisted Jele, as well as a team of hospital patients and community members, to provide feedback on all aspects of hospital life.

Marie Pinard, Director of Quality, Safety and Patient Experience at WCH, says the program is creating an invaluable opportunity for patients to join forces with staff in order to refine and enhance the cycle of healthcare provision within the hospital.

“At Women’s College Hospital, we have a strong history of engaging patients in the planning and decision-making around their own healthcare,” says Pinard. “But something we’ve recognized is that our patients can actually help us improve the care and services we provide to everyone, and this program is really about taking that to the next level.”

With the guidance of Pinard and her colleagues, the hospital’s current team of more than 30 Experience Advisors are regularly called upon to take part in focus groups, surveys, committee meetings and hospital walk-throughs. The advisors’ feedback on program development, hospital policies and the delivery of care and services is carefully considered.

“What they often do is challenge our assumptions,” says Pinard of the volunteer program members. “Sometimes, in a given situation, our attention is focused on something else and it takes another perspective to make us realize what needs to be done.”

The projects that Experience Advisors work on can range from smaller program-specific items to hospital-wide initiatives. 

“A great example is the extensive Experience Advisor feedback we’ve received around improving wayfinding within the hospital,” says Pinard. This particular move towards better signage within the hospital is yet another item Jele has witnessed evolve from a personal suggestion to an in-hospital reality.

Pinard notes that the process by which Advisors such as Jele are selected and prepped further exemplifies the level of regard WCH has for both its patients and staff.

A formal recruitment process takes place, followed by an in-depth orientation and training protocol. Support is also provided at all stages to both the Advisor and to hospital staff, who might eventually come together to reflect upon a pertinent issue.

“When this process works, the healthcare system ceases to be one-sided.”

“We really want to make sure this program also meets the needs of our Advisors,” says Pinard, who adds that in the early stages of the program, the group was even responsible for deciding that ‘Experience Advisors’ be their title.

And while Advisors are most commonly recommended by members of hospital staff, Pinard says those interested in becoming involved are welcome to fill out an expression of interest form on the hospital website.

“We work hard to ensure our participants are right for the role,” she says, “and that they are comfortable telling their story, they have time to take part and they understand what’s ahead of them.”

Looking into the future, Pinard says her team is hoping to include voices that have historically gone unheard. Recently, a trans patient was recruited to advise on the development of WCH’s new trans-related surgery program to ensure care meets the unique needs of the community and is conducted in a respectful way.

As Jele points out, providing meaningful and inclusive care requires a two-way dialogue. 

“When this process works, the healthcare system ceases to be one-sided,” says Jele. “It results in an environment where equal representation exists and where no person is left standing on the sidelines. It’s obvious that the patients are highly valued at this hospital.”