#Shoulder2Shoulder with patients and families

A look behind the scenes of the Open Call for Innovations in Palliative and End-of-Life Care

Maria Judd, Senior Director, Corporate Strategy and Development


On June 21, CFHI will convene its 8th CEO Forum. Contrary to what the name implies—CEOs will not be the only participants in the room.

The focus of this year’s event is palliative care. During the Forum, selected innovators will present their work as part of the Open Call for Innovations in Palliative and End-of-Life Care. These presentations will be made to an audience of just over 100 individuals who are key to transforming the healthcare system: patients and families, the palliative and end-of-life care community and CEOs from across Canada.

Given the role of this event in identifying innovative practices in palliative care that are ready for future spread and/or scaling up to organizations and jurisdictions, the inclusion of patients and families in the design, delivery and participation of the Forum was critical. What exactly did this look like? Two patient advisors were part of the Forum Steering Committee responsible for planning the event, shaping the program themes and selecting the speakers. We worked with national and provincial patient groups to identify 12 patient and family advisors from across Canada who will participate in every aspect of the Forum. They will have a seat—and a voice—at each table. Two patient advisors will present during the day—sharing their stories, insight and expertise. We were careful to ensure the event venue meets all accessibility requirements and we are covering all costs related to travel, meals and accommodation, for all patient and family delegates to the CEO Forum.

For patients and families not able to attend in person, live-streaming will be available for key sessions—including the palliative and end-of-life care innovation presentations and awards. We will also share key moments from the event on live video, gather stories, video and photos so that we can share as much content as possible both during and after the day.

And although the Forum itself will serve as one more critical opportunity to partner with patients and families—it is neither the first, nor the last step—in working shoulder-to-shoulder with patients, families, caregivers, innovators and systems leaders to identify and spread integrated approaches to palliative care.  Also, together we’ll work to better understand the impact of selected innovations on experiences, quality of life, and costs for patients, caregivers, providers and systems. From the beginning, patients and families have been thoughtfully, intentionally and fully included in all aspects of the Open Call for Innovations—from the design of the call itself to the selection of innovations.

Their involvement will continue post-CEO Forum as we compile key learnings from the call for innovations, the Forum and our enhanced consultation strategy to co-design future palliative and end-of-life care programming.

Because we are about fit for purpose, this is how we are walking the talk. How we include patients and families may look different from how you do it—and how direct action groups such as Patients Included do it—but the key to truly making change happen is that we all do it. Find an approach that works for you, be inspired by what others are doing, learn from each other. Most importantly, make sure your version of a ‘CEO Forum’ includes patients and families.

Maybe its time we took a second look at that name…