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Senior Patient

With Many



Our Alternate Level of Care Patient and Caregiver Advisory Council was formed over two years ago on June 11, 2018, with our first council meeting. Since then we have been involved in a number of activities ranging from research projects, grant applications, presentations, and sharing of knowledge in creative ways including podcasts, videos, in addition to traditional publications. Through these activities, we have a number of people we would like to acknowledge who have supported us in our work.


Julia Ho, Aditi Desai, & Harprit Singh coordinated our Council and research activities and were core members of our team.

Paula Blackstien-Hirsch facilitated our first focus group with patients and family members and coached us on how to do experience-based co-design in a way that was impactful and inclusive. She shared many insights and tools with our team and we are very grateful to her for volunteering her time.

Sheila Furness from Sinai Health System and Elliott Shamy from the Institute for Better Health played key roles in helping us coordinate various activities, along with logistics related to contracts and funding.

Dr. Ross Upshur and Ben Hashemi from Sinai Health System put together a wonderful podcast featuring Gord MacGregor’s experience (member of our ALC Council). They created a comfortable atmosphere for Gord to share his important story.

Dr. Sara Guilcher, Co-Principal Investigator with Dr. Kerry Kuluski on a broader program of ALC research, has collaborated with our Council on various activities and papers.

Toronto-Central Region’s ALC Task group supported the launch of this research, particularly Shehnaz Fakim and Beverly Nickoloff who provided much guidance and support with our first grant application. Without them, the project would not have launched.

Elaine Burr, a thought leader and change champion has supported practice changes in ALC for decades. Elaine believes in the importance of the patient and caregiver voice and has supported our work in countless ways including various site visits to Sudbury, Ontario by our team.

Ross Curtner, from Adjacent Possibilities, brought Lucy Bilotta’s (council member) story to life through a video of her experience which aligns with the experience of so many caregivers in our health care system.

Melissa Frew and Craig Madho from OpenLab (University Health Network) designed and co-facilitated two of our focus groups, bringing a World Café approach that creatively captured everyone’s experiences and input into our co-design activities.

Many researchers contributed to this work through support with grant applications, data collection, facilitation, and paper writing, including Dr. Don Willison, Dr. Allie Peckham, Lauren Cadel, Jane Sandercock, Dr. Michelle Marcinow, Shawn Tracy, Sarah Carbone, Kristina Kokorelias, Amanda Everall and Alana Armas.

Charissa Levy and Sandra Dickau, two trailblazers and health system leaders have supported various grant applications, papers, and other activities.

Many organizations have provided funding and in-kind support including the Canadian Institutes of Health Research (Collaboration Grant, Fund Number:157054), the Ontario SPOR Support Unit (EMPOWER Award), Sinai Health System, and the Toronto Central Local Health Integration Network. The Trillium Health Partners Foundation and the Institute for Better Health at Trillium Health Partners support the lead researcher, Dr. Kerry Kuluski as the Dr. Mathias Gysler Research Chair in Patient and Family-Centered Care.

Most importantly, to all the patients, caregivers, and providers, from across Ontario, who shared their stories. Thank You. Without having the courage to share your story and change ideas, none of this would have been possible. It is our mission to make health care work better for you. We look forward to capturing many more stories to inform our work and putting your ideas into action.

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We need you

We are looking for partners to help us pilot our patient-centered solutions to addressing ALC.

To receive more information and to collaborate with us please contact us.

Image by Priscilla Du Preez
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