Connect. Communicate. Include.

April 30, 2012

Seniors with chronic conditions and their caregivers tell The Change Foundation what will improve healthcare experience in Ontario in new report — Loud & Clear.

“The problem is that no one seems to understand the system. There’s no system map to explain how it works to caregivers or people using it for the first time. You get the sense that, without this map, you have no idea how it works. People explained parts of the system but not the overall system.”
-Ontario senior-

Connect all parts of healthcare, especially primary care. Communicate well, early, often, and across the board: provider to patient/family, provider to provider; place to place. Include patients and family in decisions that affect their lives. Don’t let people facing barriers fall behind.

That’s the essential advice that emerged from a province-wide engagement that The Change Foundation undertook late last year with seniors with chronic health conditions and their informal caregivers (family and friends). You can learn more in a new report from The Change Foundation: Loud and Clear: Seniors and caregivers speak out about navigating Ontario’s healthcare system, which CEO Cathy Fooks introduces in a short video. The report captures their lived realities navigating healthcare transitions in Ontario; it offers new data and unique insights into the big and little things that would improve their experience, health and quality of life — and Ontario’s healthcare system.

In face-to-face discussions, via webinar and through an online Storybook, Ontario seniors and their caregivers described their experiences at transition points in Ontario’s healthcare system. What happened when they switched settings, services or providers? And how did it affect their lives? Loud and Clear (PDF) gives voice to their stories, ideas, and experiences as a first step in trying to improve them. The report lands as Ontario wrestles with how to restructure public services, restrain healthcare spending, and make quality and patient-centred care a priority.

“From the stories and experiences of seniors and caregivers navigating across Ontario’s healthcare system emerges an understanding about what adds value, what needs fixing, and what’s missing. They have given us rich and instructive stories that point to the big and little things we need to tackle (starting with primary care’s disconnection to the rest of the system), not just for seniors with chronic health conditions, but for all”, says Cathy Fooks, CEO of The Change Foundation.

What we heard

Five top themes
1. The primacy – and problems – of primary care
Stop the dead ends; make primary care accountable for guiding people’s transitions.
2. The importance of connections and clarity about next steps
“Connect the Docs.” Connect all healthcare providers and services to, for, and with patients and caregivers. Clarify and simplify the processes.
3. The communication deficit
Communicate early, often and well – provider to patient/caregiver, provider to provider, system to system.
4. The inclusion factor – hey, what about us?
Include patients, families and caregivers in decisions that affect their lives and health.
5. Issues of equity
Don’t let people who are facing barriers fall behind.

The narrative – and numbers – on navigating healthcare in Ontario
In addition to stories and experiences, Loud and Clear includes a set of original data tables derived from participants’ answers to standardized questions about healthcare transitions. A sampling: a majority (55%) of the participants said they had experienced problems navigating transitions; only 28% said they could easily find answers to move through the system easily; and over 50% said they had experienced a disruption in their care due to poor communication between healthcare workers. See more keypad voting data in our Appendices.
See: Complete findings (microsite)

Engagement – who, how, where?
With the help of local health and social care organizations, the Foundation went to seniors and caregivers in their own communities – rural and urban – visiting Timmins, Dryden, Peterborough, London, Toronto, with an earlier pilot session in Ottawa. We probed the experiences of seniors in other places using webinar technology. And we captured others’ experiences and reflections online, setting up a Storybook on a website called Share Your Story, to give seniors and caregivers a guided opportunity to weigh in.
See: A province-wide engagement (microsite)

What’s Next?

The engagement fueling this report kick-started the implementation of the Foundation’s current strategic plan. A parallel consultation with Ontario’s health system leaders is also currently underway. A report capturing their perspectives on improving the patient experience will be released before the fall. And because we’re not done engaging – not by a long shot – we will be launching a Public Engagement Panel in the fall for ongoing input to inform our work. All of this intelligence will help provide context for the Foundation’s signature PATH project focused on improving healthcare transitions and building patient and caregiver participation into the redesign of healthcare in one Ontario community. Stay tuned for an announcement on the winning PATH community this spring.
Collectively, all of these parts and players will inform and lead to a capstone Summit in 2015 with key recommendations for change.


Linda Whetung, a caregiver from Peterborough who participated in the regional engagement session, said she’s heartened by the Foundation’s work and focus: “Over my ten years of providing care to my parents and parents-in-law, no one ever asked me (or them) how things were going. I would estimate that two-thirds of the time I spent caring for my ill parents has been more about advocating and recordkeeping, than just being a loving and caring daughter. My only hope is that the recommendations from this Foundation are used by healthcare providers to improve and organize the management of care of the elderly.”

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