Advancing Integrated Care through Bottom-Up Engagement: The Case for Recognizing and Supporting Patient- and Caregiver-Led Initiatives

Background: In the pursuit of integrated, equitable, and person-centered health care, there is increasing recognition that patients and unpaid family caregivers (PFCs) can offer more than firsthand knowledge of care experiences and can help generate innovative, community-relevant solutions for health equity challenges. Having a dedicated budget to support PFC-led initiatives is essential, as it ensures that PFCs have the resources necessary to implement practical solutions that address the real priorities of those directly affected by the system. Funding for PFC-led initiatives signals a commitment to authentic engagement and real partnership, where PFCs are acknowledged not merely as participants in provider-led initiatives, but as co-creators with capacity to lead improvement efforts rooted in their lived experience.

 

Approach: East Toronto Health Partners’ (ETHP) Caregiver Advisory Group (CAG) consists of fifteen caregivers from diverse ethnocultural backgrounds. During a 3-year period (2021-2023) they had access to funding to support projects they initiated and prioritized based on the identified needs of caregivers in East Toronto. They were supported by ETHP staff to design and implement three caregiver-led initiatives. As a result, ETHP was able to launch a caregiver fund that supported low-income caregivers and patients with necessities and services such as mobility aids, continence supplies, caregiver respite, transportation, and decluttering during their discharge from the hospital. Next, the caregiver support initiative developed resources to support caregivers who experience language and digital barriers to accessing healthcare. Finally, the CAG designed a series of 20 animated instructional videos to help patients and caregivers navigate the healthcare system.

 

Results: None of these initiatives would have happened without the leadership of the CAG and having a dedicated budget for PFC-led initiatives. All of the initiatives had a strong health-equity focus and helped those most in need. It provided the PFCs with an opportunity for hands-on involvement with tangible results, and the evaluation of the engagement showed high satisfaction with the overall co-design experience and the outcomes. The caregivers felt heard, seen, and respected as partners.

Unfortunately, competing priorities in subsequent years have resulted in a lack of funding to support PFC-led initiatives. This inconsistent approach to involving PFCs as merely passive participants in provider-led initiatives and PFCs as change agents has highlighted the difference between the impact of PFCs in top-down and bottom-up approaches and the need for a dedicated budget to support PFC initiatives based on the principles of equity, reciprocity, and agency.

 

Implications: Engaging PFCs in integrated care co-design, without a dedicated budget to support their leadership, limits the authenticity and impact of the engagement. When integrated care initiatives are only provider-led, PFC voices often become tokenistic and are shaped by set agendas. The top-down approach fails to capitalize on the insights of PFCs and their expertise in navigating care daily. The lack of support for PFC-led initiatives perpetuates power imbalances, and progress toward more equitable and sustainable integrated care slows down. Having dedicated funding to support PFC-led initiatives signals a commitment to inclusivity, effectiveness, real partnership, and values lived experience as a key driver for improvement