Ontario health

Rules of Engagement: Lessons from the PANORAMA Project

The PANORAMA Project was a ground-breaking patient engagement project, as well as an incredible learning opportunity for The Change Foundation. Over the course of two years, 31 panelists from across Ontario met to share their lived experiences and insights as patients and family caregivers on a range of issues related to improving people’s healthcare experience.

As a result, the Panel had a tremendous impact on the work of the Foundation, and more importantly, helped to inspire, educate, and galvanize an impressive group of patient and caregiver citizens.

However, PANORAMA also left its mark on The Change Foundation in other ways. Namely, the essential points to consider when starting or running a patient engagement initiative.

Rules of Engagement: Lessons from PANORAMA serves as an excellent resource for health providers and professionals, outlining key moments in the engagement process that require extra thought and preparation. These recommendations can help ensure that patient engagement initiatives deliver results for organizations, and also make participants feel valued and respected in the process.

Report and Related Products

PANORAMA Panelists

The Change Foundation gratefully acknowledges the dedicated and substantial work of the PANORAMA Panel.

Andrew Adams, Avonmore Susanne Kunkel, Hanover
Mary June Aitken, Dryden Kaljo Laar, Niagara-on-the-Lake
Susan Armstrong, Thornbury Donna Lalonde, Markstay
Judy Berger, Toronto Villarva Linga, Toronto
Gerald Campbell, Toronto Gail Long, Cambridge
Crystal Chin, Richmond Hill Sweeta Malhotra, Mississauga
Miguel Costa, Kingston Pierino Manti, Ajax
Peter Creditor, Waterloo Douglas McRonney, Toronto
Janice Anne Dawson, Sault Ste. Marie Patricia Morfee, St. Thomas
Allan Deschene, North Bay Patricia Norris, Caistorville
Jim Donnelly, Oakville Rosemary Sylman, Thornhill
Catherine Emes, Fort Frances Mary Tobin, Kingston
Carol Forde, Barrie Dzintars Tomsons, Almonte
Pradip Ghandhi, Toronto Kathleen Toppi, Leamington
Michael Hitchins, Peterborough Andrea Tyler, Toronto
Maciej Karpinski, Ottawa  

 

For more information, please contact:

Communications at info@changefoundation.com

The Change Foundation Releases Its Top Recommendations for Patient Engagement

Recommendations for Patient EngagementToday, The Change Foundation released Rules of Engagement: Lessons from PANORAMA, a collection of 15 recommendations and recommendations for patient engagement. The recommendations are on based on The Change Foundation’s work with its PANORAMA Panel, a group of 31 patients and family caregivers that met regularly between 2012 and 2014 to share their experiences in Ontario’s health system.

Rules of Engagement: Lessons from PANORAMA serves as an excellent resource for health providers and professionals looking to carry out similar patient engagement activities or who are already running established programs. The paper outlines key moments in the engagement process that require extra thought on the part of the organizer that help to ensure participants feel valued and respected.

“We felt it was imperative that we share the knowledge PANORAMA brought us,” said President and CEO Cathy Fooks. “Health providers and professionals can benefit immensely from these recommendations, and in turn create a patient engagement experience that rewards both the organization and the participant.”

The PANORAMA Panel was a ground-breaking patient engagement project, as well as an incredible learning opportunity for The Change Foundation. Over the course of two years, panelists from across Ontario met to share their lived experiences and insights as patients and family caregivers on a range of issues related to improving people’s healthcare experience.

The Change Foundation gratefully acknowledges the dedicated and substantial work of the PANORAMA Panel.

For more information on Rules of Engagement: Lessons from PANORAMA, and to see a list of the Panel in its entirety, please visit www.changefoundation.ca.

Caregiver Insight Invaluable

CFooks 2The first year of a new strategic plan is always eye-opening, especially when you start off with a new vision and focus, as we did.

Through our burgeoning engagement with family caregivers, we’ve been able to gain some initial, yet profound, insight into the issues family caregivers face when they interact with Ontario’s health and community care systems.

Our work has also been bolstered by an increasing amount of recognition and awareness of family caregivers and their role in our health system through growing news, journal articles, and television programming.

This momentum has been felt at The Change Foundation first-hand through The Caring Experience, our new project in partnership with the Ontario Caregiver Coalition (OCC).

At The Caring Experience’s recent telephone town halls on November 24th, we heard stories and received questions from caregivers that illustrated why we need to continue to bring attention to the duties and responsibilities Ontario’s family caregivers take on, and how they are integral to the system.

During the town halls, I was again struck by the differences and similarities inherent in each individual caregiving experience.

For some, we know that caregiving can last for long, extended periods of time. For example, caregiver Donna Thomson, who joined us for the town halls to share her experience, has been the primary caregiver for son Nicholas almost since his birth in 1988.

We also heard from Maciek Karpinski, who provided shorter term support and care for both his mother and brother as they went through separate health issues.

Despite the factual differences in their experiences, both Donna and Maciek echoed each other in terms of how they felt. They both had great experiences and bad encounters. Both described feeling helpless and ignored while they navigated the health system, and both had to assert their presence in order to be acknowledged as an integral member of a care team.

In this issue’s commentary article, our Genevieve Obarski and OCC Chair Lisa Levin take a few moments to comment on how sharing experiences through something like The Caring Experience can show the deeper connections between caregivers and help sustain the recent momentum recognizing the role of the family caregiver.

Our current work doesn’t end with The Caring Experience project, however. Over the next few months, we will be reaching out to health care providers to increase our understanding of their relationships with family caregivers. We’re also hoping to collaborate with caregiver organizations or groups from diverse communities to fully capture the breadth and depth of the caregiving experience in Ontario.

The work ahead is exciting and unchartered, and we hope you’ll continue to join us on the journey!

Patient/Family Advisory Councils in Ontario Hospitals – At Work, In Play

“We’re making a culture change here, of trying to engage our patients more in decision making and moving away from advising” (Patient/Family Advisory Councils staff interview).

This report investigates the evolving function and best practices of Ontario’s hospital-based Patient/Family Advisory Councils (PFACs): one mechanism some hospitals are using – among other approaches – to advance patient/family engagement and patient-centred care.

This 3-part preliminary report aims to guide, connect and inspire by presenting thematic findings with examples of challenges and successes (part 1); quantitative data (part 2); and listings of PFAC initiatives, with contacts (part 3). The Foundation interviewed patients, family and staff from 29 hospitals about the functioning and impact of their councils.

Hospitals early in their PFAC journey can learn from those ahead of them. In future, we hope to expand our review beyond hospitals, reporting on PFACs and related bodies in other healthcare sectors.

Read the reports: Part 1 (Emerging Themes), Part 2 (Data Tables), Part 3 (Examples: What Councils Changed).

2015-2020 Strategic Plan

The Change Foundation releases new 5-year strategic plan focused on unrecognized “glue” of our system: family caregivers.

“Our health care system is dependent on unpaid caregivers. And the reality is that these caregivers are often not recognized or respected for the role they play. At best, there is an inconsistent approach to family caregivers. In many cases, they are not even considered as key members of the care team.” (The Change Foundation, Strategic Plan)

The Change Foundation today announces the focus of our next five-year leg of strategic work – Out of the Shadows, Into the Circle. We plan to build on our past two strategic plans focused on improving experiences for patients and family caregivers as they move across Ontario’s healthcare system. Although many ideas and trends were evident, there was one consistent theme – the vital, yet often unrecognized, role of informal or family caregivers in the system. We are committing to shining a light on this area. Based on what we know already, we believe that valuing and recognizing family caregivers as integral members of the health care team should be an urgent focus for our health system.

Our strategic goal: to improve the experience of family caregivers as they help their family members transition through and interact with Ontario’s health and community care systems.

Research tells us that most Ontarians have been or will be a family caregiver at some point. Twenty-nine percent of the provincial population – or 3.3 million people – provide some form of support, assistance, care or enrichment to a family member or friend. Both women (53%) and men (47%) in Ontario take on caregiving roles.

We believe, that by recognizing, facilitating and supporting the role of the family caregivers, we can improve patient experience, coordinate care more effectively and create an environment in which the highest quality health care can be delivered. This plan was developed with input, insight, and ideas from over 100 people, including our Strategic Plan Renewal Working Group, our Sounding Board and TCF’s citizen’s panel, PANORAMA.

Our agenda will evolve and flesh out in the first year, The Change Foundation will focus on listening and learning to better understand the family caregiver experience as part of the patient experience and to identify promising models or initiatives for effective and collaborative engagement between family caregivers and providers. This exploratory work will help us scope out and identify our specific projects and policy work that will be the focus in the remaining years of the strategic plan.

Key Work Ahead

Develop a framework for understanding a focus on family caregivers as part of the patient experience.

We will use the framework to illustrate how the focus of the Foundation fits within the big picture and the important work of other organizations. This will help us identify where our focused contribution will have the biggest impact.

Learn more about family caregivers in Ontario.

We will ask: who they are, what they need, who is helping them and how they are helped, what are common challenges for all family caregivers, what are unique challenges for sub-groups of family caregivers.

Engage with family caregivers, patients and providers.

We want to learn more about the challenges that family caregivers encounter when they interact with providers and the health and community care systems and in particular, we want to learn more about the issues facing diverse and multicultural families. We will also engage with providers to understand their frustrations with the status quo.

Develop an engagement plan for moving forward.

We will develop an engagement plan to best listen and learn family caregivers, patients, providers and system representatives as we further define and implement our strategic plan.

Learn about innovative provider and family caregiver partnerships and initiatives.

We will undertake a systematic review of the literature and informally published reports and documents to learn more about innovative initiatives within Ontario and in other jurisdictions where providers and organizations are collaborating with family caregivers and patients for mutual benefits. We will use this reconnaissance to shape and identify our priority initiatives.

Learn about efforts to integrate health and community care.

We will also monitor efforts in other jurisdictions to join-up and better integrate health and community care given how this integration can help to improve the experience of family caregivers and patients.

Stay tuned for more announcements on how we plan to move from “thinking” to “doing” over the life of this plan. The Foundation looks forward to working closely with all parts of the system as we move forward on tackling this important next frontier – we are all in this together.

 

Their Experience. Our Story. Highlights from Our 2010-2015 Strategic Plan

This 23 page report highlights key achievements arising from our 2010-15 strategic plan, Hearing the Stories, Changing the Story.

As a think thank that does, we took action to contribute to the knowledge in the area of patient engagement and respond to the evolving discussion in health care. We invested in two showcase projects – the Partners Advancing Transitions in Healthcare (PATH) project and PANORAMA – both deep partnerships with patients and caregivers to help shift policy, practice, debate. Take a trip back too, over our signature events, key reports that have helped influence Ontario’s health care landscape.

As we wrap up our five year Strategic Plan and celebrate our 20th Anniversary, we will share our big lessons and learnings and hope to influence your story.

Report: Health System Navigators: Band-Aid or Cure?

Health System Navigators: Band-Aid or Cure? marks the first Foundation/PANORAMA report reflecting on ways to advance patient-centred care in Ontario. Are navigators a potential solution or another “work around” for an overly complicated system? The report covers the history and scope of health system navigators and key benefits and challenges. In Canada, the role was introduced to help cancer patients and underserved populations.

Through a deliberative process, PANORAMA panelists were asked whether navigators might be a good idea for Ontario. Their overall reply: maybe, as there is no one-size-fits-all model.  They suggest key “must haves” if the role is to be considered widely, starting with clear definitions and boundaries.

The Change Foundation’s Journey into the World of Patient Experience

In The Change Foundation’s Journey Into the World of Patient Experience, CEO Cathy Fooks provides high-level reflections on our  2010–2013 strategic journey, focusing on the lived experiences of patients and caregivers to drive system change. She says, “We decided we’d better listen to patients – maybe it would change how we saw the world of Ontario healthcare. We did listen. And it did.”

Our 2011  Loud and Clear consultations crystallized the difficulties seniors with chronic conditions have encountered in navigating the system. Fooks’s reflections outline how those consultations and subsequent research, policy analysis and patient engagement work led us to develop two signature projects, launched in 2012: Northumberland PATH and PANORAMA.

WHAT’S BEING SAID

Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers. bit.ly/2U1Mlcs pic.twitter.com/lKzWKDPM4A