Reimagining Compassionate Care in Collaboration with Patient Experience Partners

Summary

The webinar explains how North York General Hospital (NYGH) works with Patient Experience Partners (PXPs) to bring patients’ and caregivers’ lived experience into hospital decisions. Its central message is that compassionate, people-centered care improves when patients and families help shape services from the beginning, rather than being asked to review a plan after it is complete.

People-centered care and the PXP role

NYGH serves a diverse community across seven sites, including many immigrants and non-English speakers, seniors, and people living on low incomes. Its 2025–2035 strategic plan identifies delivering people-centered care as the hospital’s mission and makes personalized experiences a strategic priority. Tools such as a people-centered-care placemat and a compassionate-care canvas help staff apply principles including empathy, collaboration, cultural humility, and equity in daily practice.

PXPs are specialized volunteers who:

• Have recent patient or caregiver experience at an NYGH site, generally within the previous three years.
• Commit to at least two years and contribute to at least one ongoing project.
• Bring professional knowledge where relevant, while contributing most importantly the perspective of lived experience.
• Participate in committees, working groups, research, hiring, operations, and planning. The presentation notes that PXPs serve on more than 100 such groups.

The presenters emphasized that effective partnership means involving PXPs in defining the problem and developing solutions—not simply asking them to approve finished materials.

Co-designed volunteer-service initiatives

Emergency Department volunteer role redesign

Rather than simply restarting a volunteer role that had been inactive for several years, NYGH redesigned it with input from staff and PXPs. Staff clarified which tasks were appropriate for volunteers and where clinical responsibilities, safety requirements, and role boundaries applied. PXPs added the perspectives of patients, families, visitors, and volunteers.

Their input helped the team:

• Explain the realities and emotional demands of Emergency Department (ED) volunteering to applicants.
• Clarify that volunteers would not be expected to handle difficult situations alone, and identify available support and debriefing resources.
• Describe the ED’s complexity and diversity so applicants could assess whether they were suited to the role.
• Identify practical boundaries, including areas where volunteers should not be placed.
• Create a detailed guide distinguishing what volunteers can and cannot do.

The team stressed that the role should be reviewed over time using feedback from volunteers and staff, rather than treated as a finished design.

Visitor Welcome and Support volunteer role

NYGH originally had separate greeter and ambassador roles. PXPs pointed out that patients and families experience one hospital journey, not the organization’s internal divisions. The functions were therefore combined into a Visitor Welcome and Support Volunteer role.

PXPs helped shape the role’s title, responsibilities, selection criteria, interview questions, and training. The redesign recognized that an entrance volunteer may be one of a patient’s first human contacts at the hospital—and that people may arrive anxious, confused, grieving, in pain, or unfamiliar with the setting.

The role emphasizes listening, patience, empathy, cultural humility, adaptability, and knowing when to involve staff. Equity does not mean treating everyone identically: people may need different kinds of support, such as extra time, interpretation resources, mobility assistance, or a calmer explanation.

Volunteers are not expected to act as clinicians, interpreters, social workers, or security staff. A detailed 25-page training guide provides practical guidance, resources, and escalation pathways.

What compassionate support can look like

Compassion is expressed through how a task is carried out, not as a separate checklist item. Examples include:

• In the ED: Offering comfort items, snacks, beverages, companionship, or emotional support. Even helping someone charge a phone can make a difference.
• At the entrance: Noticing uncertainty, offering reassurance, giving clear directions, or walking with someone to their destination.
• In every setting: Recognizing the limits of the volunteer role and involving staff when a situation requires more support.

The presenters also highlighted that compassion includes supporting volunteers through realistic expectations, preparation, and access to help.

Practical approach and lessons for co-design

The presentation’s main recommendations were:

• Invite lived experience early, while the problem and possible solutions are still open to influence.
• Be clear about decision-making boundaries: Explain what participants can shape and what constraints—such as safety, operations, or role scope—must be considered.
• Treat challenge and disagreement as useful information. Feedback can expose assumptions and blind spots.
• Avoid tokenism: Involvement should affect real decisions, not serve as a courtesy review after the work is done.
• Design for both people receiving care and people providing support, including volunteers.
• Close the feedback loop: Show participants what changed, what did not, and why.

The presenters acknowledged that co-design can be uncomfortable and that not every recommendation can be adopted. Trust grows when teams listen without defensiveness and explain their decisions.

Inclusion, recruitment, and participation barriers

NYGH recognized that its PXP group did not fully reflect the community it serves. Its approach to improving representation included:

• Auditing the demographics of the PXP group and comparing them with community data.
• Identifying underrepresented groups, including younger people, LGBTQ+ people, people with physical disabilities, newcomers, and people who speak English as an additional language.
• Conducting targeted recruitment through community partners, including outreach sessions and print and digital materials that explicitly welcomed underrepresented groups.

The presenters also acknowledged that an unpaid volunteer role can exclude people facing financial, work, caregiving, or other barriers. NYGH had not yet introduced remuneration for hospital-based PXPs, though the possibility was being explored. They identified greater flexibility in how the program is structured as an important area for future work.

Reflections from PXPs and discussion

Steve described how acceptance of patient partners grew over time—from initial uncertainty about whether patients could understand hospital discussions to a culture in which teams increasingly ask for the PXP’s perspective at the outset. He noted the value of explaining acronyms and technical terms clearly.

Simon described the initial challenge of joining discussions outside his professional field. He said that being given time to speak and seeing different perspectives considered together made participation more meaningful. Judy, a long-standing PXP, similarly stressed that seeing feedback acted on—or receiving an explanation when it was not—helped build confidence and participation.

Speakers and sources featured

• Sandra Mall — Webinar host and co-director of the McMaster Equity-Based Co-Creation Hub; introduced the session and moderated discussion.
• Shauna Haberman — Manager of People-Centered Care at North York General Hospital; presented the hospital’s approach and PXP program.
• Sharon Aliponopoulos — Manager of Volunteer Services at North York General Hospital; presented the volunteer-role redesign examples.
• Steve Wolinsky — North York General Hospital Patient Experience Partner; discussed his experience and the ED role redesign.
• Simon Greenberg — North York General Hospital Patient Experience Partner; discussed committee work and the visitor welcome role.
• Judy — Long-serving North York General Hospital Patient Experience Partner; shared reflections during the discussion. No surname was provided.
• Karen — Audience participant; asked about representative recruitment and barriers to volunteering. No surname was provided.
• Senait — Appears to assist with slides and the closing of the session; the subtitles use inconsistent spellings of the name.