Voices of Patients: What Matters to Us is What Matters to You

Listening. Really listening, engaging and partnering with patients is fundamental to improving and reimagining Ontario’s healthcare system. When we ask, patients consistently tell us that their biggest challenges are related to navigating the healthcare system as a whole. As care providers we are engaging patients as partners in their care and shared decision making every day. Yet we have often been trained to see each healthcare encounter by patients as an episode. Patients tell us they experience it as one journey, with many stops along the way. And so our focus as an ambulatory hospital reflects this desire to improve the experience of individuals as they move in, out of, and across the healthcare system over time.

At Women’s College Hospital we are committed to understanding what matters to patients and bringing these matters forward to realize meaningful change. As we were designing the programs and services that would be housed within our new hospital building, we engaged women from a diversity of communities to tell us what they wanted in a hospital and from their healthcare. Our Thousand Voices for Women’s Health project was unprecedented and gave us valuable insights, amplifying patient voices to ensure that decisions reflected their priorities.

In 2020 and beyond, it’s time to engage even more. It’s time for the next (r)evolution of patient engagement. Today, patients are more engaged in their own treatment options, more likely to do their own research and increasingly expect to be able to interact with their healthcare providers in the same ways they do with commercial brands. Multiple studies have connected higher levels of clinical outcomes to a focus on patient experience. In 2020 and beyond we can expect that patient engagement technology will move well beyond patient portal use into more specialized patient-centered tools. We can expect the introduction of advanced patient-reported outcome measures (PROMs) and patient reported experience measures (PREMs). Capturing measurements from the patient’s perspective, such tools can be used to more fully assess quality of care and impacts on health status and quality of life. And we can expect the voices and stories and experiences of patients to continuously inform design, care, research, innovation and education at Women’s College Hospital.

Last year our Experience Advisor Program was created in partnership with patients, families, caregivers and the community to share and reflect on their experiences at WCH and the healthcare system in order to improve healthcare experiences for everyone.

Experience Advisors have helped us shape and design care programs right from the start. When we set out to build Canada’s first publicly funded, hospital-based transition-related surgery program, we knew we needed to directly involve the community this program would serve. A group of individuals with lived experience were involved in a patient journey mapping that simulated a patient visit to the program from the moment they walked through the doors of the hospital, to check in on the unit, to the OR and post-operative care unit.  The lessons we learned on this journey shaped aspects of the building itself such as washroom signage, ensured inclusive language was built into the electronic patient record and ultimately has contributed to positive experiences for thousands of future patients. One of our Experience Advisors, Kiera, who helped shape the program told me how valuable this experience was for her - she said that the trans and non-binary community is so diverse and it’s so important that they are involved in creating something like the TRS program, so that it can be shaped to meet their needs, whatever they happen to be.

Experience Advisors are now playing key roles on hiring committees at Women’s across all levels. Most recently, we partnered with patient experience advisors on the recruitment and hiring of three new senior leaders. In my view, their insights and contributions to our process and final candidate selection were instrumental in helping us find the best people for these critical roles. In speaking with them afterwards, they felt the same way. Vincenza, who participated in two of our search committees, said that being an equal partner on these hiring committees was a deeply gratifying experience and she felt respected and listened to. She thinks that WCH has taken patient centered care to the next level by including a patient on a hiring committee and that it is yet another example of how WCH is blazing the trail and revolutionizing care.

Meaningful, effective patient engagement is core to advancing our strategy. I’m excited and moved when patients share their stories with me. Some of the knowledge patients bring has been gained through the most painful of experiences and truly represents their generosity and compassion. To all those who take the time to fill out a questionnaire, participate in a study, communicate through clinicians or patient relations, or sit a committee with a willingness to share their wisdom in the hope it will improve care for others, thank you. What matters to us is what matters you.

Fully affiliated with

A member of

Council of Academic Hospitals of Ontario (CAHO)