Making Impact Visible: Measuring Engagement in Integrated Care

Background: Patient and caregiver engagement is central to high-quality integrated care, yet its impact is difficult to capture in real programs. The integrated care program (ICP) we studied supports people for up to 90 days after hospital discharge, linking hospital, primary care, and home and community services through a shared plan and a single point of contact. The program is based at the University Health Network (UHN) in Toronto, Ontario, Canada. The program has grown quickly through collaboration with patients, caregivers, and staff, but there is limited documentation that traces how engagement shaped decisions over time or how participants judge its most meaningful contributions.

 

Approach: A patient partner (lead author) designed and facilitated a 30-minute “Mapping Meaningful Moments” activity within a Learning Health System workshop that brought together patient and caregiver partners, program leads, clinicians, and researchers at mixed tables. Notes and worksheets were collected, de-identified, and analyzed collaboratively to identify where and how engagement influenced design, implementation, and evaluation.

 

To complement the activity, we invited patient and caregiver partners and program staff and leaders to complete role-tailored question sets from the Public and Patient Engagement Evaluation Tool (PPEET v2.0, Module B). The survey asks participants to rate how well key features of the engagement worked, including clarity of purpose and roles, information and supports, opportunities to share views, and the extent to which input influenced decisions. This provides a shared frame for comparing experiences across roles.

 

Results: Early analysis shows that engagement influenced both culture and practice. Storytelling with real patient journeys replaced data-heavy slide decks and helped align decisions with patient realities. Co-design produced concrete fixes, such as clarifying discharge roles and arranging essential supplies before patients return home, and journey mapping refined pathways during periods of rapid expansion.

 Mixed-role discussions helped teams separate cross-program themes from pathway specific issues. PPEET v2.0 Module B responses will be summarized descriptively and integrated with the workshop analysis. Items that explore perceived influence, clarity of purpose and roles, respect for participants’ views, and communication about follow-through will capture aspects of engagement that are hard to observe directly.

 

Open-ended responses will add further context and examples. Together, the survey and workshop findings will show how widely these patterns are shared across roles and suggest practical markers to follow over time, such as the percentage of respondents who felt their input influenced decisions.

 

Implications: This patient-partner-led, mixed-methods approach helps teams surface and organize participant-reported examples of engagement impact and link them to practical indicators. Pairing collaborative analysis with brief surveys makes both tangible practice changes and subtler shifts in perspective easier to see. The materials we outline can be adapted by others to improve how results are shared back and how future improvements are prioritized.