Knitting a new future, together: the next chapter of patient and family engagement at SickKids

The first 507 days of my son’s life were spent at The Hospital for Sick Children (SickKids). We experienced a roller coaster of emotions, from utter trauma and fear to extreme joy and relief. Every moment held its own gravity, and each created a new set of expectations. These unique and often messy moments are all woven together into the story of my son’s life and our family’s lives. Like a ball of yarn, the beginning of the string cannot be separated from the end. 

My journey with my son is built on multiple interactions: good, bad and everything in between, all impossible to untangle from each other.  

It was this experience as a “medical mom” — caregiver to my son, being dropped suddenly into a world of critical care, ventilators, tube feeds and tracheostomy procedures, that shifted the trajectory of my career. I returned to school to complete a doctorate, and then came back to work in the very place it all started: SickKids. From my family’s experiences, I have returned to help shape future families’ experiences in a new role as Senior Manager, Child, Family and Community Engagement.  

We cannot make the hospital experience better in the future without listening to the patients and families who come to us today. Learning how to listen to their sometimes-difficult stories is the challenge facing us in patient, family and community engagement. 

Partnering with patients and families for Precision Child Health 

Along the health-care journey, there is usually a caregiver consistently next to each child at SickKids. These caregivers often know the threads that make up each unique child, including the neighbourhood they grew up in, their favourite food or when they aren’t acting like themselves. Yet when they come to the hospital, we tend to focus on a single symptom or event, without trying to understand the whole thread that was woven together before they entered the hospital door. Why? 

It’s time we fully recognize the value of the knowledge that comes from the continuity and care provided by those closest to our patients. When we’re making a treatment plan for a child, it should be informed not only by the moment that brought them to the hospital, but everything before. That understanding comes from partnering with patients and their families, valuing their knowledge and empowering them to work with their care teams to achieve a shared goal – a happy, thriving child or young adult. 

Understanding each thread in the shift to individualized care is not easy. My son is incredibly complex, and his combination of conditions is truly one of a kind. Some of his conditions are congenital, some are the result of the medical interventions he needed to stay alive. It makes the most sense for him to be treated in an individualized way, but the reality is, for every specific condition, his care has typically been based on what works best for the population it was studied on.  

I know that today, we can’t predict exactly how he will respond to his next surgery, but that is why I rely on our care team to include me as a partner in each decision made. Together, we can face the next challenge with a relationship built on transparency and trust. This is the future of Precision Child Health and the foundation of a great SickKids experience.  

Building trust through transparency  

It’s an exciting time at SickKids. With the Precision Child Health movement ramping up, paired with the newly launched Patient and Family Experience Strategy, there’s an opportunity to aim high and make real change. Our first step is to foster relationships based on trust, so our progress reflects the needs and perspectives of everyone. 

One place to start is research and data. For example, I’m mixed race and so is my child. If he is prescribed a certain medication based on a data set comprised of people who are predominantly of a single ethnic group, how can I feel confident that medication will be effective for my child? 

The data we use to help inform care decisions needs to reflect the population our hospital serves, and their unique threads. In some cases, it involves reparations, as well as acknowledgement that systemic discrimination and inequities still exist in the health-care system. 

We cannot build trust without acknowledging and recognizing past harms have happened. It’s a reality we don’t always like to face, but if we don’t, we perpetuate it into the future, and the thread that makes up someone’s ball of yarn can be frayed or broken. Building trust starts with a deep listening and understanding of the communities we serve, including those who don’t trust us to serve them. 

Knitting together threads to empower the patient and family voice 

We know that engaging our patients, families and community means that they have a seat at the table, and involving people meaningfully starts at the very beginning. The back and forth, the collaboration — the strengthening of every string by maintaining their integrity as we weave them together — that’s where the real magic happens. It can’t be achieved with tokenistic engagement at the end of the project. 

Now we need to knit together the unique voices in our community, like a quilt, each string’s integrity and strength coming together to create a beautiful tapestry. A tapestry we can be proud to show off because it involves you, reflects you and was made with you. That’s where we hope the Patient and Family Experience Strategy can take us. 

We will facilitate collaboration and engagement in a new way, working hard to maintain the unique threads that build each individual’s story, while being able to act, inspired and informed by the voice of the collective. 

I’m excited to see where this new era will take us, but I know without a doubt, it will be worth all the growing pains, challenges and work that it will take.