patient engagement

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
Click to download report

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
Click to download
Considerations Image
Click to download

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.

 

Solving the integration puzzle

In our 2011 report, Winning Conditions to Improve Health Care, we predicted that it was “likely that some reorganization of LHINs and CCACs <would> occur.” From our perspective, we believed that reorganization would be “a huge opportunity to better align decisions and resources with priorities and purpose.”

This opportunity is now here. As of June 21, 2017, the CCACs have merged with the LHINs across Ontario. Although we all agree that change was and is needed to integrate care and improve patient and caregiver outcomes and experiences, we also know that structural changes alone won’t do the job. Ontario needs a fundamental shift to embrace patients and caregivers as partners in healthcare.  Merging organizations is just a small piece of the puzzle.

Around the time that the LHINs were created in 2006, The Change Foundation looked at how integration was being done around the world. That research helped us identify key elements that are critical for integrated care. We have highlighted those elements in our work over the past few years. They are:

  • Include and value patient and caregiver perspectives
  • Provide seamless care
  • Pay attention to relationships, not just governance structures
  • Funding should follow the patient
  • Performance management should be linked to patient outcomes
  • Information management needs to be integrated and accessible

In our view, many of these foundational elements still need development in Ontario. The goal of an integrated system of care, which will lead to improved outcomes and better patient and caregiver experiences, doesn’t come about without a wholistic approach to change.

Take the Partners Advancing Transitions in Healthcare (PATH) project in Northumberland, as an example. PATH was a partnership between patients, caregivers and 12 cross-sector health care organizations in Cobourg. By co-designing the approach to care, based on patient and caregiver experience and input, they designed changes to improve people’s experience moving within and across health care organizations in each patient’s healthcare journey. There was a notable cultural shift in Northumberland—within health care organizations and the community—that is still evident today.

More recently, as part of our Changing CARE initiative, the Change Foundation is collaborating with four partnerships in Ontario that will change the way care organizations, providers, caregivers and patients work together. This shift will be achieved by developing programs and resources that address four areas of caregiver needs—Communications, Assessment, Recognition and Education—identified through extensive engagement and partnership with caregivers and providers. Most importantly, each of the Changing CARE partnerships demonstrated a true commitment to co-design with caregivers, and a passion and dedication to make meaningful change. They ‘get’ it. Yes, a structural change will be part of their implementation, but it won’t be the driver of the needed cultural shift.

When we look across the system, we are encouraged by the more prominent role that caregivers are playing in Ontario’s health care landscape today compared to 2006. As we said in Winning Conditions, “To accomplish [an integrated health system], we need to seek and be guided by the lived and expressed experience of the people now navigating the health care system.”

Although there is work to do to get more of the fundamental pieces in place to support caregivers within the system, we have begun tapping into their expertise. As the positive momentum continues, we are hopeful that the recognition and awareness of the role of caregivers will continue to grow among Ontario health care organizations and providers. It is only when patients and caregivers are true partners that we’ll be able to achieve true integration.

Bringing the Canadian caregiver perspective to 54 Countries

The Change Foundation participates in the International Conference for Integrated Care

Jodeme Goldhar, Executive Lead of Strategy and Innovation & Lori Hale, Executive Lead of Research and Policy

Many jurisdictions across the world are facing similar challenges when it comes to partnering with patients and their caregivers to build integrated health care systems, which in turn support better patient and caregiver experiences. And each of these jurisdictions is tailoring its own solutions to its own unique system and population.

When international partnerships and information pipelines are created, such as they were at the International Conference for Integrated Care (ICIC) in Ireland in May, 2017, then what’s happening on one side of the world can be put into practice on the other. That’s how change is made.

ICIC was hosted by the International Foundation for Integrated Care and the Republic of Ireland’s Health Services Executive. Together, 1,200 delegates from 54 countries got together to discuss Building a platform for integrated care: Delivering change that matters to people.

Through our work first with the PATH project, and now Changing CARE, The Change Foundation has worked, and is working, with multiple sectors and organizations to improve integration in Ontario. We were honoured to present on what we’ve learned in our work so far, as we pursue our new strategic goal of improving the experience of family caregivers as they help a family member transition through and interact with Ontario’s health and community care systems.

Our past work, which focused on improving the experiences for patients and family caregivers as they move about Ontario’s health care system, led us to the vital yet often unrecognized role of informal or family caregivers in the system. As an independent health policy think-tank that works to inform positive change in Ontario’s health care system, we’ve been able to identify what some of the most pressing needs are, and we were happy to travel to Dublin with these ideas, and an open mind, in tow.

We presented together at the Making Patient and Carer Engagement Happen workshop, where we focused on the importance of co-design in developing integrated systems of care, the value and impact of patient and caregiver involvement, and the Changing CARE projects.

As a conference with a Patient Included Charter Status, by definition, patients and caregivers were actively involved in the design and planning of the conference, as well as participating as attendees and speakers.

For example, Liz Maddox, a caregiver, shared her experience, and described how she and her husband started a support group in their rural community. They had eight people attend their first meeting, and they now have nearly 80. She spoke about the importance of peer support, and commented that she was “empowered by what I hear today.” In particular, she was inspired by the work of The Change Foundation, and felt that our approach reflects what’s important to her. For us, this confirms that our work is focused on what’s important to caregivers.

Jodeme was also honoured to chair a workshop on Strengthening Family Caregivers on behalf of the Foundation, and play a role in advancing this agenda on the international stage. Being asked to facilitate this type of global discussion is a clear indication of the international recognition of the role and profile of the Foundation.

A highlight was the Care Alliance Ireland presentation on their partnership with the Health Services Executive, Family Carers Ireland and the InterRAI team to improve the carer assessment in the InterRAI assessment tool. Eight countries are involved and 50 caregivers from each country are providing input on the design of the draft questionnaire. The goal is to roll out the carer assessment of this tool internationally. 

We were proud to have the opportunity to serve as a model for others overseas. Just as importantly, we embraced the opportunity to learn from others and bring some ideas home with us, to keep The Change Foundation at the forefront of integration issues in Ontario. It’s by joining this type of community that we’re able to keep learning and growing, and keep improving the caregiver experience. We look forward to future collaborations with IFIC and its colleagues around the world.

Changing CARE is an initiative in which The Change Foundation partners with health care organizations and family caregivers to improve experiences and strengthen Ontario’s health and community care systems.

The International Foundation for Integrated Care is a not-for-profit educational membership-based network that crosses organizational and professional boundaries to bring people together to advance the science, knowledge and adoption of integrated care policy and practice.

Creating new linkages between the caregiver, the community and health care is essential

Genevieve Obarski, Executive Lead, Program Implementation 

In January, February and March, The Change Foundation team had the privilege of traveling across Ontario to launch the Foundation’s four Changing CARE partnerships. Each launch event was an excellent showcase for each partnership, bringing together the family caregivers, patients, providers, and other community stakeholders that will be part of this initiative. At every stop we’re asked “Why here? Why this project?”


In some ways this is an easy question. All four partnerships had common key characteristics:

  • The organization’s Executive leaders championed the idea and placed it in their organizations strategic plan.
  • Family caregiver experience was a current major organizational priority.
  • There was a strong focus on provider engagement, education and behaviour change related to caregiver experience.
  • The organization was prepared for co-design work with caregivers as demonstrated by existing patient/family engagement activities.
  • Proposal scope, target population, and provider engagement strategy supported the potential for spread and culture change in the organization and the community.
  • Each lead organization had partnerships that would improve the caregiver experience inside and outside their facility’s walls.

It’s this last point that has become increasingly important to the Changing CARE initiative. Caregiving is not a role that only exists within the confines of a hospital or doctor’s office. Providing support and care, of any kind, requires caregivers to piece together services and resources from organizations that exist across the continuum of care and deep into the community. To connect with caregivers on a meaningful level, it is imperative that we understand and link together the networks they are likely to use.

Each Changing CARE partnership has already reached out to a broader community network in one way or another.

  • The Embrace partnership will see the Cornwall Community Hospital and the Cornwall and District Family Support Group reach caregivers of individuals with mental health problems.
  • In Toronto, Sinai Health System and WoodGreen Community Services will work closely together to create a hub for caregivers looking for support and leverage WoodGreen’s extensive community networks to ensure caregivers are identified.
  • St. Joseph’s Health Care London will lead a team of community partners that include Alzheimer Society London and Middlesex, the Canadian Frailty Network, and the South West Local Health Integration Network, among others.
  • Lastly, the Connecting the Dots partnership is being led by the local hospital network and family health teams to directly connect and engage with caregivers across Huron and Perth counties.

However, this kind of local, grassroots work is not always an easy task. The silos that can exist between health care and community care services can be a barrier to collaboration. But identifying common bonds and groups of stakeholders can be one solution. For the four Changing CARE partnerships, linking already existing networks of services was a key realization of a stronger together mentality on a local level.   

This work is merely beginning. The next step for our Changing CARE partnerships will be to leverage these combined networks to reach local family caregivers and invite them to collaborate and co-design supports/resources that work for them.

The potential for these projects, however, is exponential.

Finding new solutions to address caregiver issues, we need a diverse group of people and organizations with a holistic, community-based vision. Through Changing CARE, we’ll encourage and foster these new linkages for the benefit of all Ontarians.

Click here to view our Changing CARE videos

Enhancing Care, Enhancing Life: Looking closer at Long-Term Care Councils

Enhancing Care, Enhancing Life - Long-Term Care Councils
Click here to download Enhancing Care, Enhancing Life.

Stephanie Hylmar 

In Ontario, more than 620 long-term care homes provide round-the-clock nursing, medical, social and personal care for more than 78,000 residents at any one time. In recent years, long-term care homes have been increasing their efforts to work collaboratively with system partners, staff, residents and families to enhance the quality of care and quality of life for their communities.

One of the patient engagement models used to do this is Residents Councils and Family Councils. However, due to being mandated under the Long-Term Care Homes Act (2007), these Long-Term Care Councils have caused some to question their authenticity and contribution.

Spurred on by our work on patient and family advisory councils in hospital settings, the Foundation felt it was time to learn more about these councils and their impact on long-term care home life.

After surveying over 2,500 long-term care residents, family members, council staff assistants and administrators, the Foundation found that these councils are perceived positively by their communities and are seen as having real impacts as reported in Enhancing  Care, Enhancing Life.

Specifically, four key findings emerged from the surveys:

  • Enhancing the quality of life, enhancing the quality of care, and information sharing we identified as the three main roles councils played;
  • Residents and family members participating on councils have a much clearer understanding of what the councils accomplish and believe that they fulfil their roles;
  • Despite councils being mandated by the provincial government, council staff assistants and administrators see the value, importance and impact of having a council; and
  • Improvements in relationships are mainly seen between residents and staff.

These four key findings are an overview of some of the important big picture matters that councils address and deal with. These findings are also significant because no other independent or arms-length organization has reviewed the state of these councils in such detail.

Long-Term Care CouncilsHowever, resident’s councils and family councils may only be an initial step in the long-term care sector’s patient- and family-centred journey.  In Insights into Quality Improvement: Long-Term Care, Health Quality Ontario (HQO) suggests that truly listening to residents and families means “moving beyond the existing resident and family councils to more co-leadership and participation in quality improvement activities” (pg. 29, HQO, 2016). Furthermore, a key component of continuous quality improvement is incorporating the “voice of the customer”—i.e. residents and families (HQO, 2016). Knowing the degree to which councils are able to provide this voice, and where successes and pitfalls lie, can inform others on how to optimize their councils and experiences for residents and family members.

The findings from Enhancing Care, Enhancing Life and HQO’s recent report set the tone for the next phase of our Long-Term Care Resident Councils and Family Councils project.

Through a series of five case studies with long-term care homes from across Ontario, the Foundation will address a number of key questions that emerged from the surveys such as: why are councils fundraising, how are councils fundraising, what does quality look like, and how do councils contribute to quality improvement.  Selected from an open call to the sector, homes being featured in the case studies are currently participating on a voluntary basis through one-on-one interviewing and focus groups.

Although this work won’t be completed until Spring 2017, be sure to learn more about Residents’ Councils and Family Councils in Ontario by downloading Enhancing Care Enhancing Life today: https://www.changefoundation.ca/enhancing-care-long-term-care-report/.

Charting a New PATH

Partners Advancing Transitions in Healthcare (PATH) was a truly groundbreaking initiative for The Change Foundation (TCF) and for the health care community in Ontario. PATH was one of two showcase engagement projects that formed the basis of TCF’s work and learnings between 2010 and 2015, based on our Hearing the Stories. Changing the Story. strategic plan.

Developed in partnership with the west Northumberland community, PATH was a made-in-Ontario patient engagement project that aimed to create an environment conducive for patient engagement at every level of the local health care system. This meant working alongside and truly integrating patients and family caregivers into the west Northumberland health care fabric. This work couldn’t have been done without the many volunteers and committed organizations in west Northumberland. To them, we say thank you.

Charting a New PATH is a three-part report that describes what TCF has learned as participants in, and funder of, the PATH project. The reports describe the process of developing the PATH proposal and overall project, and the overall lessons we learned working with patients, family caregivers, and providers throughout the project. We have reflected on the major achievements, the unexpected opportunities, as well as which of our ambitions weren’t fully realized. PATH was an extreme learning and growing opportunity, and it’s in that spirit that we present our findings.

We believe our reflections on commentary can help inform the work of others in the health care sector who are currently carrying out patient engagement activities in their organizations, communities, or regions.

Reports and Related Products

PATH Project Partners

In addition to the seniors and family caregivers involved in the PATH project, The Change Foundation also acknowledges the important work of the 12 project partners involved in PATH.

Central East Community Care Access Centre Northumberland Hills Hospital (NHH)
Central East Local Health Integration Network NHH Community Mental health Services
Community Care Northumberland Northumberland YMCA
Golden Plough Lodge (long term care home) Palisade Gardens Retirement Residence
Health Systems Performance Research Network Patients Canada
Northumberland Family Health Team QoC Health

 

For more information, please contact:

Communications at info@changefoundation.com

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.

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).

WHAT’S BEING SAID

The Changing CARE teams with the help of additional experts co-designed surveys to probe the experience of caregivers and the experience of providers. Take a look and adapt the survey and questions at your organization: bit.ly/2FlrsEw pic.twitter.com/fULLtnZReR