The Power of Co-Design in Cultivating Change

Jenn Ridgway and Susan Anstice

Five women working at a tableAs co-leads on the Cultivating Change project at Sinai Health System and WoodGreen Community Services, we are repeatedly amazed and humbled by the passion that caregivers, partners and staff involved in Cultivating Change contribute towards designing a more caregiver-friendly hospital and community.

Caregivers have a strong voice in designing the Cultivating Change project. Advisory and working groups made up of caregivers and staff help design the process at every step, from proposal to implementation. Caregivers and staff also share their personal experiences through interviews, focus groups and consultations, and these inform our understanding of how caregivers experience our services in the hospital and community.

Caregiver Summits and brainstorming events bring together caregivers, staff and community partners to develop a mutual understanding of each others’ experiences, highlights, pain points and gaps in the system. So far, we have hosted three caregiver co-design events. Sinai Health System’s Bridgepoint campus hosted two events with Stroke Unit and Palliative Care participants. And WoodGreen held a Caregiver Summit in June with almost 100 community members.

At these events, table discussions among caregivers, partners, policy-makers and staff help us learn from one another. Our objective is to create an environment where everyone has equal say. Starting with empathy-building activities to get everyone thinking about what it’s like to be in the shoes of a caregiver, participants are asked to come up with as many change ideas as possible. We value creative ideas that are not restrained by financial or practical considerations.

Group of men and working working at a table

We were truly amazed by the diversity of opinions and energy at the tables — everyone involved is committed to meaningful change. Caregivers have expressed that at these events they feel as if they come first, and are empowered to create real change.

From the multitude of change ideas developed at our co-design events, working groups create a broad list that can be transformed into actionable projects. We then return to the participants to ask which they feel will create the most valuable change for caregivers. Final selections are chosen for their potential to make the hospital and community experience caregiver friendly every time.

We have learned that this co-design journey takes more time than traditional consultations, but the feedback we receive from participants shows us how powerful co-designing change can be. It’s a real example of how the journey is as important as the destination.

For example, caregiver partners on the Palliative Care project told us that their participation helped them process feelings of grief and loss. One caregiver described caregiving like treading water – you’re not really processing your experience in the moment, you’re just keeping afloat. Caregivers remarked that the interviews helped them reflect on how strong they were at the time, and left them feeling amazed they were able to do what they did. Staff have also benefitted from interacting with caregivers as peers; they found this helped them recognize challenges they would not have considered before.

We both feel privileged that these amazing people are sharing stories of their lives with us, along with their time and commitment to making things better in the system. We are inspired by the strength and willingness of people whose caregiver journey is at an end to talk about one of the most difficult and emotional experiences they’ve ever had. Being present when caregivers relate their stories is a deeply emotional experience for us too, and puts the entire project and the need for change in perspective.

Working on Cultivating Change is a truly rewarding experience for both of us. While many wonder if simply consulting caregivers would produce the same results, it’s been clear to us through the meaningful feedback we’ve received that co-design leads to ideas, insights and outcomes we would not have discovered through traditional methods.

We’re proud to be a part of this innovative and collaborative project.


As #OHTs embark on more patient and #caregiver engagement activities and the compensation question surfaces, these tools can help answer the question: Should patient and family-caregiver participants be paid? #ONhealth #codesign