Pulling Back the Curtain: My First Year as CFHI’s Patient Partner

Apr 25, 2019

by Angela Morin, Patient Partner | 25 Apr, 2019

“Isn’t it funny how day by day nothing changes, but when you look back everything is different?”

Daryl Bell, a respected leader in patient and family centred care at Kingston Health Sciences Centre, often referred to this quote by C.S. Lewis in his presentations.

I’ve thought of this quote often during my first year as CFHI’s Patient Partner. I thought of it when CFHI’s Bridge-to-Home Spread Collaborative — which has a focus area influenced by patients and families — included patient partners on the steering and evaluation committees and on all of the improvement teams who are working toward improving the patient experience of transitions from hospital to home. I thought of it when I co-chaired a learning exchange supported by many organizational partners from across Canada which included 25 individuals with lived experience from underserved communities as steering committee members, presenters and participants. And I thought about it when the Vice President of Corporate Services started looking for plain language lawyers in response to feedback from a patient partner who found the language in contracts didn’t reflect the relationship she thought she had with the organization; and I thought of that quote on April 5th when CFHI launched Innovation Challenges that require a patient and/or family caregiver as a team member.

By welcoming the perspectives of patients and families and actively engaging them, we better understand their experience and learn where there are opportunities to improve. As a member of the Patient and Citizen Engagement team, my role as the Patient Partner is to bring a patient perspective to the work of CFHI. The role was created to support partnering with more patients in a meaningful way, to find opportunities to model it, and to help the organization build capacity around this way of working. But I am not the only patient perspective at CFHI, there are many others who participate in our programming, providing their insight and sharing their experiences.

To be honest, it was an experiment, a quality improvement project of our own. I, a patient and family experience advisor, was invited to see behind the curtain.

It has given me a new understanding of the challenges and constraints that individuals who truly want to engage with patients are working within. There are things like budgets, strategic plans, mandates and accountability agreements. There are policies, processes and reporting lines and A LOT of meetings! Sometimes things seem to take forever and other times you feel like you are drinking out of a fire hose.

There are champions, resistors and those who are “already doing it”.

Many organizations hide these challenges behind the curtain. They wait to engage patients when they have the ducks in a row, the cake is partially baked, when they won’t have to say, “I don’t know”. It strikes me that the apprehension some staff and leaders may feel that patient partners will ask for things that the organization can’t do, comes from not being transparent about these challenges. That the frustration and disillusionment that patient partners sometimes feel comes from putting their heart and soul into a project only to find out there are barriers that were not shared with them that will impact success.

However, just because I am now aware of those constraints does not mean that I accept them. It does not mean that I stop challenging the status quo. More than ever I question “why?” In fact, it seems to me that more than ever staff are now asking the same question. Together we are stumbling across the challenges and instead of saying “we can’t” we ask, “how can we?”. We are having honest conversations, sharing ideas, celebrating successes, problem solving and building relationships with more patient partners. We are learning, making mistakes, taking risks and evolving.

The creation of this role was an important experiment. As we look to the future, we are examining how we have evolved, and thinking about what comes next. I believe there are a mosaic of ways to engage and that the patient perspective must be embedded at all levels of an organization to accelerate change. I believe that where and when the patient voice is invited to participate in conversations does make a difference.

Patient engagement is a key lever for healthcare improvement. It means meeting people where they are on the spectrum of engagement, recognizing the need to continuously strengthen the foundation and evolving to improve it.

It also means welcoming, supporting and building capacity for more patients, families and caregivers to be engaged in healthcare improvement in different ways at different times. Those of us doing this work, regardless of our role in it, will continue to teach, learn and make some mistakes. We will hopefully keep pulling back curtain and improving the patient experience and outcomes, together.

Photo of Angela Morin and Carol Fancott