Graphic Mural: Using The Patient Voice to Strengthen Our SystemDecember 3, 2014
“We are a choir of voices, which may help us have more of an impact… it’s the first time that many of us have tried something like this.”
The PANORAMA panelists came together for their final face-to-face facilitated meeting October 3–4, 2014, in Toronto. The panelists will continue to be involved in the Foundation’s work up to and including our Capstone Summit in Toronto (March 9–10, 2015). This graphic mural by Lissa Sorsa displays key themes from the day’s deliberations.
The Toronto discussion was both productive and poignant, as the panelists recognized that they would soon be ending a special purposeful, collective experience. Said Cambridge area panelist Gail Long: “These people feel like family. I am going to miss them very much.”
Empowering Panelists, Enabling Citizens
Saturday’s full-day agenda covered a lot of ground, including a discussion on ways that panelists can continue to use their voice to improve healthcare in their communities after the panel disbands. Overall, most participants felt a sense of empowerment and were emboldened by the panel’s collective voice. As one panelist put it, “Alone, I can scream but no one listens, but with our one voice, I could be heard.”
Panelist Donna Lalonde (Sudbury) asked, “Now that I am empowered, what do I do with this new knowledge and capacity?” In the ensuing discussion, panelists outlined specific ways they were involved or planned to be involved in local healthcare programs and initiatives, including seniors’ groups, hospital Patient and Family Advisory Councils (PFACs), public health initiatives promoting active lifestyles, and HealthLinks. PANORAMA panelist Peter Creditor was invited to sit on Health Quality Ontario’s advisory committee for performance monitoring across the province. Creditor said that the PANORAMA experience opened the door and gave him the confidence to add his voice to this important HQO initiative.
Overall, PANORAMA has helped to inspire, educate and galvanize an impressive group of patient-caregiver citizens. They are keen to continue using their lived healthcare experiences to improve our system, even after the panel officially wraps up its work in spring 2015.
Healthcare Scenario Simulation
As part of the day’s participatory learning, panelists also took part in various healthcare simulation exercises. These exercises were a chance to share their perceptions on healthcare interactions across providers and places. Each panelist took part in exercises using role play, storyboarding or small-group discussion.
During the role play dramatizations, the panelists’ creative sides were on full display, leaving Foundation staff wondering if some PANORAMA representatives had missed their true theatrical calling. The focus for this segment was on identifying the common themes, challenges and solutions in healthcare encounters. Panelists chose to act out one of the following scenarios: 1) hospital emergency room visit and possible admission; 2) home care visit by one or more healthcare professionals; 3) primary care / general practitioner / family health team visit and possible referral to a specialist.
A number of common themes emerged, including the following:
1) The emergency room visit generated the most response, with many panelists recounting stressful experiences. The group called for clearer signage and steps to follow.
2) The triage nurse is a crucial individual in healthcare encounters. One panelist noted “that’s a very special kind of nurse” as she or he can often “make or break” a patient’s experience in the ER. Another said, “If that person is having a rough day, you could be in for a bumpy ride.” Many participants emphasized the need for both triage nurses and resident doctors to “bring back the medicine.”
3) Good communication skills are critical to a positive healthcare encounter. Many panelists described the significant challenges they have experienced when healthcare providers don’t take the time to really listen to what the patient is trying to convey.
The informative and sometimes hilarious healthcare skits also demonstrated barriers faced by patients when moving through our system. For example, these barriers were identified in the ER scenario:
1) Cultural/linguistic: In one case, a patient did not speak English and required constant translation assistance from her daughter, often creating a ripple of misunderstanding.
2) Emotional: The same team demonstrated the emotional toll of their confusing ER visit, as healthcare providers failed to communicate with each other.
3) Physical: Finally, as the patient’s pain worsened, the daughter urged the triage nurse to seek attention for her mother. The patient seemed almost too ill to move. The scene captured the hopelessness patients feel when their needs are not being addressed or listened to.
Advice On Our Next Strategic Plan
“You have to promote the worth of the caregiver … making sure everyone else includes [caregivers] as a valued part of the system.”
Later in the day, the Foundation’s CEO, Cathy Fooks, and Chair, Susan Pigott, led an important discussion on the organization’s future strategic plan, which will build on our patient-centred work to date. PANORAMA panelists weighed in on the importance of providing greater support for caregivers within our system. Fooks gave some grounding statistics: 3.3 million Ontarians provide informal care; the economic cost to replace informal caregivers is estimated at $26 billion annually; and 70 per cent of caregivers find caregiving to be stressful.
Panelists raised some themes for consideration:
1) Provide support to caregivers: There is a need for providers and the system more broadly to help care for caregivers, as they do for patients.
2) Promote the value of caregivers: Educational campaigns need to be targeted to the healthcare community and the public.
3) Treat patients and their caregivers as a unit: This could be addressed through education for frontline service providers who acknowledge the integral role of the caregiver in the patient’s care.
Wrap-up: Our CEO reflects on PANORAMA’s journey
In closing, CEO Cathy Fooks reflected on the panel’s full and fruitful two-year mandate. The panel has added the patient voice and perspective to our work in a variety of ways:
1) Individual panelists have joined the Foundation in a wide range of meetings and conferences, including Association of Family Health Teams of Ontario (AFHTO), Kingston General Hospital (KGH), Patients Canada, Ontario Hospital Association (OHA), Health Quality Ontario (HQO), and various Local Health Integration Networks (LHINs).
2) The panel has added ideas and feedback to our projects, including the Health System Navigator report.
3) It has advised on the development of our groundbreaking PATH project and of the enabling PATHWay to Aging Well portal and hand-held technology.
4) It has advised on the development of an early patient volunteer compensation policy, to guide organizations using patients and caregivers in their work.
5) Finally, the panel has provided feedback on the Foundation’s upcoming/developing strategic plan.
In closing, Cathy Fooks thanked the panelists, saying: “PANORAMA models why patient engagement has to be the new normal in healthcare. Your lived healthcare experiences have helped to shine a light on where our system needs to do better and work harder to improve patient experience. Whether it’s in the planning or delivery of healthcare, you’ve told and shown us that the patient voice needs to be included at each step and every stage – and upstream. We thank you for your generous infusion of time, energy and ideas to make our system work better for others.”