Should Money Come into It? A Tool for Deciding Whether to Pay Patient- Engagement Participants

In March 2015, The Change Foundation released Should Money Come Into It? A Tool for Deciding Whether to Pay Patient-Engagement Participants.

should money come into it, compensation cover
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In Fall 2017, in response to increased uptake and interest in the topic, the Foundation decided to “relaunch” this report, by releasing a newly redesigned Decision Tool and our 7 Things to Think About when Considering Compensation infographic. As patient engagement activities become more common and compensation is a question, these tools can help answer the question: Should patient and family-caregiver participants be paid?

You are free to adopt the tool as is, adapt it for your needs, or use it as a springboard to discussion. In the associated brief, straightforward paper, you will also find pros, cons and expert opinions on the philosophical and practical issues involved. A note about process: We developed the decision tool with input from our own key patient engagement group, the PANORAMA panel.

The Decision Tool Image
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Considerations Image
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Compensating patients and caregivers for their expertise

Christa Haanstra, Executive Lead Strategic Communications

In 2015, when we researched and wrote Should Money Come into It?, a tool for helping to decide whether to pay patient- and caregiver-engagement participants, we knew it was a hot topic. In fact, it received a lot of attention at launch and remains one of our most popular resources.

Two years later, as the patient and family caregiver engagement movement continues to build momentum, we’re seeing renewed interest in this report. It’s clear that whether to pay patient and caregiver participants, as a form of recognition, is something that many in the health and social sectors are grappling with. This can only be defined as notable progress, and we’re thrilled that our paper is serving as a useful roadmap for them on this issue.

This report isn’t only striking a chord in Canada—it’s resonating beyond our borders as well. First came a request from a patient experience online library in the UK to promote it on their homepage and make it available on their website. Then came a shout-out to the report in a recent #BMJDebate tweetchat, followed by a BMJ blog post  in advance of the next tweetchat (#BMJDebate) that is happening at noon EST on July 13, 2017 on the Terms of engagement for patient participation.

Given the report’s currency—pun intended—we wanted to highlight again some of the key points and underlying reasons we created it in the first place.

It’s important to remember that recognition and appreciation for people’s time and expertise comes in many forms, and compensation is only one of them. But the truth is, for some, participation isn’t an option without compensation.

Ever since patients and caregivers have been taking seats at the tables where planning, discussions and reviews are being done at hospitals and other health care organizations, the inequity has been clear. At the Change Foundation, we strongly believe that covering expenses for them to participate, and share their expertise—often based on very personal, sometimes emotional stories and experiences—is a given. In fact, we would argue those expenses should extend beyond the typical—mileage, parking, meals—to include things like child care, respite care, personal support to get to meetings, even dog sitting. Basically, we believe when we are asking people to share their expertise as a volunteer, the least we can do is make sure they aren’t out of pocket for any expenses they have to cover to be able to participate.

But at the Change Foundation, we also believe that covering only expenses is sometimes not enough. A key principle of co-design is that patients and caregivers are equal partners in the process—yet there’s a big elephant in the room. We are asking patients and caregivers to commit the same amount of time and energy—sometimes more—as paid employees. We believe that, in certain situations, patients, families and caregivers should also be offered compensation for their time and expertise.

The truth is not all patients and caregivers want to be paid, but that shouldn’t stop organizations from offering payment. In fact, we’ve had experiences where payment was returned, or payments were donated back to the organization. It’s much better to have this happen and give the patient or caregiver the option, than to not offer payment at all.

As patient and caregiver engagement, and co-design opportunities, become much more commonplace, we think the discussion about compensation needs to get more attention. Each organization needs to grapple with it independently. We are happy that our framework—which we know isn’t perfect, but we believe is a solid starting point—is serving as a spark to have the discussion.


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

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

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.


“It is such a positive thing to have an orientation -where are things in the hospital, where can I find a tooth brush, the bank?” – Fabiana, Family Caregiver Hear from other #caregivers in our Wishlist videos: