20 Faces of Change Awards

20 Faces of Change AwardsLaunched in November 2014, the 20 Faces of Change Awards campaign sought nominations of patients, caregivers, health care leaders and practitioners, family members, community members, volunteers, and staff that have contributed to improvements in patient- and family-centred care in Ontario. The 20 recipients were chosen by a specially appointed Selection Committee of third-party health care leaders who sorted through over 80 nominations from a diverse range of teams, individuals and organizations, submitted from all across Ontario.

Selection Committee members:

The 20 Faces of Change Awards Selection Committee was comprised of 10 individuals with substantial knowledge of Ontario’s health care landscape from varying professional and personal experiences. Their task was to review nominations of patients, caregivers, health care leaders, health care practitioners, family members, community members, volunteers, and staff that had contributed to improvements in patient- and family-centred care in Ontario.

  • Judith John, Patient Specialist
  • Jodeme Goldhar, Lead, Health System Integration for Complex Populations and Primary Care, Toronto Central CCAC
  • Nadine Henningsen, CEO, Canadian Home Care Association
  • Deborah Simon, CEO, Ontario Community Support Association
  • Jane Merkley, VP, Programs, Services and Professional Affairs, Bridgepoint
  • Theresa Boyle, Health Reporter, Toronto Star
  • Elizabeth Carlton, VP, Policy and Public Affairs, OHA
  • Scott Dudgeon, Principal, Dudgeon & Associates, former TCF Board Member
  • Jennifer Schipper, Chief of Communications and Patient Engagement, Health Quality Ontario
  • Candace Chartier, CEO, Ontario Long Term Care Association (OLTCA)

Recipients were formally announced and recognized at The Change Foundation’s Capstone Summit and 20th Anniversary Celebration from March 9-10, 2015 in Toronto. See video of all the winners here.

Below is a list of all the 20 Faces of Change Awards winners. Click through to learn more about how these inspiring groups and individuals are making positive change for patients and caregivers in Ontario’s health care system.



ChirgwinChirgwin Family and Tamara Dube-Clarke

For the Chirgwin Family of North Bay, Ontario, involvement in the health care system began upon the Alzheimer’s diagnosis and hospitalization of their patriarch, Andy Chirgwin, over four years ago.

With the help of Tamara Dube-Clarke, Patient and Family Partnered Care Coordinator at North Bay Regional Health Centre, the family created a video called “Andy’s Story” to introduce Andy, a retired policeman, husband, father and grandfather, to his caregivers. The video, spurred from the family’s desire for staff to know Andy as a person and who he was before his diagnosis, has since been viewed over 1,500 times on YouTube.

“Andy’s Story” has been used both locally and in the broader health care community as a training tool, including at a Patient Engagement Forum held by the North East LHIN and The Change Foundation last spring. The video has also:

  • Been integrated into the North Bay Regional Health Centre’s regular staff training for dementia care;
  • Featured at “Pursuing Excellence in Geriatrics 2013” – a provincial multidisciplinary geriatric conference with over 200 delegates – in order to highlight the importance of the lived experience; and
  • Highlighted in the Canadian Gerontological Nursing Association’s Summer 2014 newsletter.

The willingness of the Chirgwin Family and Tamara Dube-Clarke to share “Andy’s Story” has helped to bring the patient voice back to health care in North Bay, as well as spark related conversations about patient-centred care across the province’s health care system. Sadly, Andy passed away in January, 2015.

CtystalCrystal Chin

Crystal Chin of York Region is a leader and innovator in the field of patient engagement in Ontario.

Diagnosed with a neuromotor condition at eight months old, Crystal never allowed chronic disease to slow her down, instead deciding to use her lifelong curiosity and passion for helping others to be a voice for many in the health care system. Only in her mid-20s, she has already made significant contributions to improving health care delivery through her work at such organizations as Holland Bloorview Kids Rehabilitation Hospital, Health Quality Ontario, The Change Foundation and Patient’s Canada.

Crystal’s efforts to ensure that the patient voice is heard have been a catalyst for quality improvement in all sectors of Ontario’s health system. Her contributions include:

  • Being a Public Relations Representative, Co-Chair of the Youth Advisory Council, member of the Patient Family Advisory Council, and a Foundation Ambassador at Holland Bloorview Kids Rehabilitation Hospital;
  • Assisting in the hiring process of every senior official hired over the past year at Health Quality Ontario, participating in the organization’s patient engagement conference as a panelist and speaker, and helping with a new initiative to recruit a patient to sit on the Board;
  • Contributing greatly to PANORAMA, a patient advisory group at The Change Foundation; and
  • Sitting on Patients Canada’s Board of Directors as a member of the Communications Committee.

Through her experiences at the above mentioned health care organizations, Crystal has helped a vast network of patients, caregivers and their families by delivering the message that their voice must be heard for substantive improvements in care to be made. She is a true inspiration to everyone who meets her.

DrEd-KucharskiDr. Kucharski MD

Family Physician at the Sherbourne Health Centre; Regional Primary Care Lead, Toronto Regional Cancer Program South

Dr. Ed Kucharski is a Family Physician at the Sherbourne Health Centre and a Regional Primary Care Lead for the Toronto Regional Cancer Program. He is celebrated for his proactive approach to patient engagement and dedication to reducing barriers that make access to medical services difficult for marginalized populations in our communities.

Dr. Kucharski takes a “patient engagement in action” approach to his medical practice, believing that “making health care accessible sometimes means going to the patient at the time and place that is most convenient for them.” Dr. Kucharski has brought cancer screening and cancer screening awareness to some of the GTA’s hardest to reach populations, including those with primary or underlying mental health problems. His contributions to patient-centred change include:

  • Heading a mobile coach cervical screening initiative with his Sherbourne Health Centre team that offered cervical cancer and STI screening services to sex trade workers – 294 women were reached during the first 12 weeks of this pilot project;
  • Organizing cervical screening clinics for newcomer women in St. James Town by bringing screening to their apartment buildings during Cervical Cancer Awareness Week in 2013 and 2014 – during which over 60 women were screened for cervical cancer;
  • Working with the Canadian Cancer Society on their Screening Saves Lives projects in order to develop resources and educate the public and health care providers about the importance of screening the LGBT (lesbian, gay, bisexual and transgender) populations; and
  • Teaching across the province for Rainbow Health Ontario in their Trans Health Connection project.

Thanks to Dr. Ed Kucharski, many individuals who would have otherwise gone unscreened have now been screened and/or given access to health care services. His work is a true testament of how simply re-thinking the way we deliver health care in our province means we can reach more people right where they are.

eleanorEleanor Rivoire

Former Executive Vice President and Chief Nursing Executive, Kingston General Hospital

Eleanor Rivoire of Kingston, Ontario is the former Executive Vice President and Chief Nursing Executive at Kingston General Hospital (KGH). In her role, she was the executive sponsor for Patient and Family Centred Care and the driving force behind KGH’s Patient and Family-Centred Care (PFCC) program.

Setting her sights on changing the culture at KGH to one that encouraged patients and families to bring their voices to the table on matters of organizational planning and decision-making, Eleanor led the charge to make sure that the four PFCC principles – Dignity and Respect, Information Sharing, Participation and Collaboration – were incorporated into all aspects of hospital life. Thanks to her leadership, over 60 Patient Experience Advisors currently partner with KGH staff, decision-making groups materially impacting the patient experience are required to include at least one patient advisor at the table, and KGH is seen as a worldwide leader in patient-centred care. Simply put, Eleanor’s work has had a profound impact on patient experience at KGH.

Eleanor’s multiple contributions to effecting patient-centred change at KGH include:

  • Ensuring PFCC language and expectations are woven into all job descriptions, evaluations and policies;
  • Developing patient-centred leadership tools which support staff and advisors alike regarding what they need to know and be aware of when meeting at the decision table together; and
  • Ensuring that the first voice heard at new staff and resident orientation is the voice of the patient.

Through Eleanor’s leadership and encouragement, KGH has also become a resource for many other health care organizations. In the past four years alone, the hospital has been approached by over 150 organizations across Canada, the United States, Europe and Australia who would like to better understand its approach to PFCC. She is a great example of how local patient-centred initiatives can have a global impact.

holland-bloorvilleHolland Bloorview Kids Rehabilitation Hospital

Client and Family Centred Care Simulation Development Team

Holland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. Client and family centred care (CFCC) is one of Holland Bloorview’s core values, and the organization is committed to putting this value into action every day.

An interprofessional team composed of hospital representatives and families led the development of simulation scenarios that provide employees and students meaningful and hands-on learning about how to embed client and family centred care into their daily practice.

In order to ensure the simulation scenarios were authentic and meaningful, the team held a full-day planning session that brought together the experience and expertise of about 30 individuals, including interprofessional front line clinicians, families, administrative employees, and leadership and simulation experts. The team based the scenarios on the lived experiences and stories shared by the participants at the development session. Each scenario tied directly to a core principle of family centred care – respect, information sharing, participation and collaboration.

Seven scenarios were developed, and four are currently being used as educational tools at the hospital. Two scenarios are videotaped, allowing employees and students to observe and discuss the interactions between health care providers, clients and families. Two scenarios are live simulations, allowing participants to actively engage with simulation-trained actors who portray families. Following each simulation, a debriefing session helps participants develop strategies to put CFCC into action. As of April 2014, the four simulations are delivered monthly as part of a full-day, mandatory new clinical employee orientation on CFCC. Existing employees and students are also invited to attend the simulation training.

The CFCC simulation development team represents a meaningful partnership between hospital representatives and families. Their work is a direct reflection of Holland Bloorview’s commitment to enhance client- and family-centred care practice within the organization and the health care system more broadly.

The CFCC simulation work at Holland Bloorview was made possible through a Fellowship from the AMS Phoenix Project.

IntegratedIntegrated Comprehensive Care Team

St. Joseph’s Healthcare Hamilton

The Integrated Comprehensive Care Team (ICCT) at St. Joseph’s Healthcare Hamilton (SJHH) is a joint initiative between two hospitals, a home care agency and community partners. Together, these sectors have developed innovative clinical care pathways that follow patient journeys across hospital and home care.

Integrated Comprehensive Care (ICC) works by taking a patient viewpoint on a hospital service that is characterized by fragmented delivery, and then combining the clinical teams, pathways and patient record into a single platform. The combined clinical team then works together and with patients to redesign care, including such manoeuvers as shifting specific clinical activities to the most effective and lowest cost setting (i.e. from hospital to community or from acute to rehab). ICCT members change their practices to support the patient journey across the two sectors as a single journey, including cross training each other and operating to their full scope of practice. ICC further adds value with 24/7 phone support for the patient, combined with responsive and flexible services.

Always aiming to improve the care pathways they design, the ICCT recently implemented the following changes to their original concept based on patient and family feedback combined with outcomes and cost data:

  • Increased responsiveness to patient and family requests, leading to a reduction in total service through more timely interventions;
  • Using inexpensive technology, including iPads, to communicate with patients and among team members;
  • Empowering patients to self-care; and
  • Cross-training, leading to significant reductions in inpatient care with better outcomes.

The above changes have led to significant improvements in quality, patient/client satisfaction, and cost savings, including reduced costs per medical case. SJHH staff have also reported a greatly improved quality of work life. Most recently, the Ministry of Health and Long Term Care asked the ICCT to coach and mentor new integrated teams as part of a planned development and spread of bundled funding models in Ontario which was announced in 2015.

jessicaJessica Saunders

Client and Community Relations Coordinator, St. Joseph’s Care Group

Jessica Saunders of Thunder Bay, Ontario is the Client and Community Relations Coordinator at St. Joseph’s Care Group (SJCG), an organization offering services in complex care, physical rehabilitation, long term care, mental health and addictions to the people of Northwestern Ontario. Dedicated to the concept and practice of client-centred care, she has worked with SJCG for the last four and a half years in the areas of public education and facilitating innovative corporate initiatives.

As part of SJCG’s 2012-2015 Strategic Plan, Jessica has led a committee of clients, family members and staff in developing and establishing a Model of Client-Centred Care aimed at fostering a living culture of client-centred care at the organization. Under her leadership, over 100 clients and family members have been engaged in focus groups to share their thoughts and insights regarding what excellent quality care means to them, supporting the development of the Model which focuses on the following four elements: 1) Organizational Leadership; 2) Dignity and Respect; 3) Quality Care and Improvement; and 4) Client and Family Engagement.

Through her involvement with the Model, Jessica has influenced education activities that impact client services in the Care Group’s three spheres of care: 1) Seniors’ Care; 2) Chronic Disease; and 3) Mental Health & Addiction. Recognizing the need to involve clients and families from the beginning of change initiatives (and the need to cultivate these relationships), she has helped to ensure that the Client is at the core of everything SJCG does.

Jessica is a shining example of how passion and commitment can create impact beyond expectations. She has successfully effected positive change within a large organization where limited client and family engagement to impact quality improvements existed before. For those hoping to blaze a similar path, especially within complex organizations, her work serves as inspiration.

mount-sanaiMount Sinai Hospital’s Acute Care for Elders (ACE) Strategy

Mount Sinai Hospital is an internationally recognized 472-bed acute care academic health sciences centre located in Toronto, Ontario, dedicated to delivering the best medicine and best patient experience possible by focusing on excellence in patient- and family-centred care.

The hospital’s Geriatrics Steering Committee (GSC), comprised of hospital leads, front-line staff, patients and caregivers, plans and implements changes to benefit the physical and mental care of older adults. When the GSC successfully lobbied for new funding within the organization to establish an inter-professional team in geriatrics in 2007, the group became increasingly interested in the implementation of more evidence-based, elder-friendly care practices. This influenced Mount Sinai’s senior leadership to make Geriatrics a core strategic priority through the implementation of its Acute Care for Elder’s (ACE) Strategy in 2010.

The GSC established its priorities, planned around implementing changes based on evidence and the realities of the hospital environment, and reviewed their progress and areas for development to ensure the overall sustainability and success of the initiative. Recognizing that their patients not only come from the community, but often need the support of community partners to remain active and independent, the ACE strategy approach also focuses on strong collaboration across health system partners, including the Toronto Central Community Care Access Centre (TC CCAC) and the SPRINT Senior Care and Circle of Care Community Support Services (CSS) Agencies.

Under this Strategy, Mount Sinai has implemented a series of evidence-informed, but tailored interventions (i.e. ISAR, GEM, ACE, Orthogeriatrics, HELP, NICHE, ICCP, etc.). A leading practice for other health care organizations, the hospital’s GSC has set the bar high in terms of establishing quality patient-centred care for our growing ageing population.

northumberlandNorthumberland PATH Partnership

Formed in 2012, the Northumberland Partners Advancing Transitions in Healthcare (PATH) project is a true first in Ontario.

It is a system-wide venture that brings together 12 healthcare organizations and patient advocacy groups, over 160 patients and caregivers, 31 volunteer transition coaches and 135 healthcare providers.

Driven by a common goal to improve experiences and, specifically, transitions for seniors in the Northumberland community as they move in, out of and across the healthcare system, PATH is testing a process called “experience-based co-design”—an approach to planning that includes patients and caregivers as equal partners in decision making to prompt system-wide change.

Over the past two years, patients, caregivers and providers have co-designed the following PATH solutions:

  • Connectivity – local seniors involved in the project are using a patient / provider portal coupled with mobile technology to store their personal health story, monitor their chronic health conditions and communicate with their healthcare providers
  • Information/planning – a new web-based resource, pathwaytoagingwell.com, has been created with information, planning tools and resources to minimize, for seniors and their caregivers, the health-related challenges that often come hand-in-hand with our later years
  • Volunteer Transition Coaches – 31 volunteer transition coaches have been recruited, trained and assigned to seniors in the community to help support those with the new technology tools and those who might not have support from family members or others as they manage the numerous transitions across the healthcare system
  • Person-Centred Care – a Person-Centred Care Model has been developed and, related to this, a Patient and Family Advisory Model is being developed to help healthcare providers tap into and use input from patients and their caregivers

The RISE team, a small and very committed group of local residents, has been part of the PATH project since its inception, sharing personal healthcare experiences as patients and caregivers for the benefit of others.

Initially set up as a support system for the seniors and caregivers working on PATH, the RISE Team—which stands for Respect, Information, Support and Empowerment—has become much more than originally intended. The “nucleus” where ideas are generated, tested and improved, RISE Team members are informing all aspects of PATH, ensuring the patient and caregiver voice is heard.

The PATH project is a made-in-Ontario healthcare initiative, focused on listening and learning from patient experiences to make changes in the local healthcare system to better meet the needs and improve experiences of seniors and their caregivers. This project has shown that by building credibility, trust and hope within a community, we can work collaboratively to improve health care.

Pam-and-Audrey1Pamela Catton, MD, and Audrey Jusko Friedman

Patient and Family Education and Cancer Survivorship, University Health Network

Dr. Pamela Catton and Audrey Jusko Friedman of Toronto, Ontario created the Patient and Family Education Program at Princess Margaret Cancer Centre. Together, their pioneering work in the field of patient engagement (PE) has brought national recognition to the need for high-quality, patient-centred education tools that are based on best practices and accessible to consumers.

In 1999, Pamela hired Audrey to lead the charge for the establishment of a hospital-wide Patient and Family Education Program at the Princess Margaret Cancer Centre, the first comprehensive patient education program in the province. With a strong focus on patient-centred learning and self-management education, this corporate program contributes to improved health outcomes, including the quality of and satisfaction with care, and responds to the desire of patients and their families to be active partners in their health care journey. In 2011, Audrey assumed the role of Director of Patient and Family Education, and Pamela, Medical Director, for all University Health Network (UHN) hospitals.

As a Radiation Oncologist, Pamela had observed little support to help people living with the post-treatment effects of cancer. Determined to change the way supportive and clinical services for cancer survivors were delivered in Ontario, she (with the support of the Princess Margaret Cancer Foundation and a grant from the Canadian Foundation for Innovation) led the establishment of a Survivorship Program at the Cancer Centre, and subsequently the establishment of ELLICSR, a health and wellness cancer survivorship research centre dedicated to revolutionizing the cancer experience through collaborative efforts between Princess Margaret’s Patient Education and Survivorship departments. This program aims to: 1) Optimize the health and well-being of people with cancer and their families; 2) Empower patients and families to become experts in the management of their own symptoms, health and wellness along the entire trajectory of care; 3) Integrate effective patient education into novel models of care delivery; 4) Harness the power of communities to drive and accelerate innovation in survivorship programming and clinical services; and 5) Make meaningful contributions to survivorship research.

Audrey has also had a profound impact on patient-centred care at the University Health Network and beyond. A champion of patient education initiatives both nationally and internationally, she was the first non-US chair of the National Cancer Institute’s Cancer Patient Education Network, and she established the Canadian Cancer Patient Education Network to bring together cancer educators from across the country to discuss, develop and implement best practices in patient  and family education services. She also led the provincial patient education strategy for Ontario and has served as Provincial Head of Patient Education for 10 years. Collaborating with UHN and Cancer Care Ontario, Audrey helped develop an exciting innovation for improving health care provider patient teaching and communication competencies called “Maximizing PE Skills”. This multiple award-winning curriculum has been implemented across Canada and the US and was recently adapted by the DeSouza Institute into e-learning for health care professionals.

Collectively, Pamela and Audrey’s work has led to sustained patient-centred change in the health care system. Their combined leadership has also contributed to greater awareness and availability of PE across the country, including the development of quality standards for PE programs and resources. These two women have truly established the field of PE in Canada.

partnersPartners in Care Roadmap Strategy Development Team

University Health Network (UHN)

The Partners in Care (PIC) Roadmap Strategy Development team at the University Health Network (UHN) in Toronto is a ground-breaking initiative led by the Collaborative Academic Practice (CAP) portfolio. Dedicated to making improvements that enhance patient-centred care, PIC was established to ensure each member of the health care team, including staff, physicians, patients, caregivers, students and volunteers are actively engaged in improving the patient experience at UHN. 

Led by Joy Richards, Vice-President, Health Professions and Chief Nurse Executive, and two key members of her team, Susan Brown, Senior Director, Strategy and Transformation and Arsalan Hamidi, Planner, created the PIC Roadmap, an aspirational two-year plan to advance patient-centred care at UHN. Endorsed and supported by the UHN’s Board of Trustees that, last April, welcomed 18 patient and caregiver representatives to share their stories at their annual retreat, the Roadmap supports the following three change platforms:

  • Creating compassionate, caring and collaborative work environments for staff so that they feel safe and supported in order to provide the best care and service to one another and to their patients;
  • Engaging patients and their caregivers in more explicit and tangible ways, facilitated by the development of a Patient Engagement program to bring patients and their caregivers into important planning and decision-making activities;
  • Providing the framework for consistent and improved care and service delivery by building on the principle that leading practices in one program should be operationalized across the organization.

The PIC strategy team has taken a courageous and innovative look at patient-centred care at UHN through the implementation of these platforms. By prioritizing the relationships among ‘employer and staff’, ‘staff and staff’, and ‘staff and patients’, they have not only underscored the importance of creating healthy work environments so that providers can more easily care for those in need, but also identified strategic forums embedded in the core work of the organization to engage patients and their caregivers to ensure optimal experiences for all.

patients-advisoryPatients’ Advisory Council: North East Toronto Health Link

One of the first acts of the North East Toronto Health Link was to form a Patients’ Advisory Council (PAC). In the spring of 2013, the Council was formed with patients, caregivers and a few providers. With the Health Link focused on providing individualized coordinated care planning to patients, PAC has been devoted to embedding the patient and caregiver voice in its clinical program.

Currently, a dozen patients, two providers and the Health Link director sit on PAC, which meets for two hours every two months. The caregiver co-chair also sits on the Health Link Advisory Council, representing PAC. The group aims to build the Health Link Program through the design of a care plan and focusing on transparency of patient information, co-design and quality improvement.

Since its inception, the Patients’ Advisory Council has:

  • Co-designed a coordinated care plan that was piloted by the Toronto Central Local Health Integration Network (TC LHIN) and has helped inform the provincial coordinated care plan;
  • Provided significant feedback on the Toronto Central Integrated Client Care Program, which ultimately shaped the initiative;
  • Created a one-page card to help reduce the need for patients to repeat their stories to providers;
  • Helped re-name NETHL’s real-time identification, flagging and notification system for patients who arrive in the Emergency Department and are candidates for care planning to the Better Care System;
  • Advocated for transparent information – patients wanted to be told specifically why they were being contacted in the emergency department; and
  • Program Evaluation: Created questions to evaluate the care planning taking place on patients enrolled in NETHL’s Better Care Program.

The impact of PAC has been very significant on NETHL. The group has helped the Health Link understand the importance of transparency of information, the experience of patients and caregivers, the need to be upfront and frank, and the importance of treating all patients as individuals. Their hard work and dedication should undoubtedly be applauded.

Patients Canada

Patients Canada is a patient-led organization that fosters collaboration between patients, family caregivers and the health care community. Since 2011, the organization has been a trailblazer in bringing forward patient and caregiver stories and experiences to inform changes and improvements in the healthcare system. Their work is

focused in four areas: developing patient leaders, facilitating patient partnerships, developing patient experience quality improvement and measurement tools, and developing patients as research partners.

In particular, Patients Canada has led the way in introducing patient-focused Key Performance Targets (KPTs). Working with organizations, Patients Canada develops tailored KPTs to measure and improve the patient experience within each unique healthcare environment. The KPTs allow for a concrete assessment of the system’s movement towards patient- and family-centred care.

Their work on KPTs has been adopted and adapted by a number of health care organizations who are integrating the patient perspective into health care performance assessment, including:

  • Accreditation Canada’s introduction of patient centred accreditation;
  • Health Quality Ontario’s (HQO) efforts to develop more patient-centred primary care performance indicators;
  • The Association of Family Health Teams of Ontario’s (AFHTO) initiative to better understand and improve the patient-doctor relationship; and
  • The development of the Strategy for Patient Oriented Research (SPOR) by the Canadian Institutes of Health Research (CIHR).

Patients Canada’s work and strategic vision has been instrumental in creating a true shift in the health care system. Promoting the need for patients and caregivers to bring their personal experiences to all aspects of health care – including clinical interactions, service redesign, policy development and research – Patients Canada’s work has gone a long way in improving the relationship between patients, family members and health care staff.

patricia-mackeyPatricia Mackey

Patient Advisor & Inaugural Member of the Patient and Family Advisory Council, North York General Hospital

Patricia Mackey, now deceased, was an inaugural member of the North York General Hospital’s (NYGH) Patient and Family Advisory Council, and a patient advisor. Diagnosed and treated for breast cancer at NYGH in 2009, she reluctantly agreed to apply for the position of patient advisor in 2012. Though initially concerned that she might not have much to offer, Patricia quickly became an inspiration, friend, and enthusiast to those she touched in her role, as well as a lauded member of the hospital’s Patient and Family Advisory Council.

Despite being diagnosed with a recurrence of her breast cancer in December 2012, Patricia continued to play an integral role at NYGH. In March 2013, she began working with a staff member over a period of nine months to record her thoughts on what it was like living with a terminal illness, her opinion on the role of patient and family advisors, and stories about where she received (and didn’t receive) patient and family-centred care. The first video, entitled “Living with a terminal cancer diagnosis”, was posted on YouTube in February 2014 and has since been viewed over 5,000 times. By sharing her personal health care journey and experience, Patricia hoped patients and families would hear a firsthand account that “palliative care is about finding energy and joy in your day – not focusing on the illness.”

In recognition of Patricia’s contributions to furthering patient- and family-centred care, her family established The Patricia Mackey Patient- and Family-Centred Care Educational Award. Over $120,000 has been raised to date to establish an annual Patient- and Family-Centred Care Education Day at NYGH where experts visit and share the latest developments in the field. The award also provides professional development in the form of workshops or other forums in patient- and family-centred care for up to two staff members, physicians, volunteers or patient and family advisors from any area in the hospital.

By sharing her health care journey, Patricia has made a valuable impact on NYGH’s culture of patient- and family-centred care. Her work reinforces the important role of each health care team member in shaping the patient experience. There is no doubt that her contributions to the hospital will have a lasting impact.

renalRenal Patient Website Team

London Health Sciences Centre

In February, 2013, the Renal Patient Website Team at London Health Sciences Centre (LHSC), comprised of multidisciplinary health providers, administrators and over ten patient advisors, came together to create a website for patients with chronic kidney disease (CKD) that would enable them to access educational resources to assist them through their treatment journey.

From January to April 2014, the Ontario Renal Network conducted consultations with CKD patients, family members and caregivers from across the province to determine how their experiences in the renal care system could be improved. The team incorporated the feedback they garnered from these consultations into the LHSC Renal Patient Website, including the fact that patients most wanted to learn about the lived experience of CKD from other patient and families. As such, the website features nine unique patient stories in video format, organized by key topic areas. Patients who volunteered to record their stories are from the LHSC renal program.

The LHSC Renal Website is the first of its kind in Ontario. Built with patients for patients, this initiative has led other Regional CKD Programs in the province to reflect on how they too can best support the educational, emotional and mental needs of patients, as well as partner with them for quality improvement. The LHSC project team listened to what patients and family members wanted and successfully delivered on those needs with a comprehensive educational website that will used by patients across Ontario. It is vital that their hard work be commended.

sara-shearkhaniSara Shearkhani

Caregiver; Co-founder, Family Caregivers Voice

Sara Shearkhani of Toronto is the co-founder of a caregiver-led group, Family Caregivers Voice (FCV), that is committed to educating family caregivers on their journey and promoting self-advocacy. She is also the Lead for Patient and Community Engagement Research (PaCER) Toronto, a branch of PaCER, designed to train patients and caregivers as researchers and dedicated to taking patient/caregiver engagement in the health care system to another level.

While she was a PhD student, Sara suddenly became her husband’s primary caregiver following his brain cancer diagnosis. Sara grew frustrated with the inadequate amount of support for patients and family caregivers within Ontario’s health care system. After expressing her views in a 2014 article published in the Globe and Mail, she received many sympathetic emails from like-minded and frustrated family caregivers, including one particular caregiver named Carole Ann Alloway, with whom she eventually created FCV.

Sara has educated herself on the many people, organizations and agencies who influence health care policy, attending many of these groups’ conferences and even developing one. Sara and Carole Ann have started an Awareness Campaign with the goal of educating caregivers on stages of caregiving and to provide health care professionals with caregivers’ insights. They have presented at Toronto Western Hospital, Patients Canada and The Change Foundation, providing real life stories of how the health care system has failed patients and caregivers, all while offering solutions.

Recently, Sara initiated a partnership with Patients Canada which resulted in a new Caregivers Working Group. The group’s first mission is to develop four workshops for caregivers, and to partner with organizations such as The Change Foundation and the Ontario Hospital Association to begin offering the workshops and furthering the cause of the caregiver.

With the help of her supervisor, Dr. Nancy Marlett, she also established PaCER Toronto team. PaCER is a Canadian innovation in research started at the University of Calgary, designed to train patients/caregivers as researchers for the health care system. The Toronto team includes four patients/caregivers dedicating their time and energy to learn how to write Ethics proposals and conduct qualitative research. Currently, the Toronto team is working mainly from Sara’s living room and has decided to work on Spousal Patient-Caregiver Dyad.

Through her hard work and determination, Sara gives a voice to other caregivers who, at times, do not receive the same recognition as other health care providers for their service. She has turned the devastating, unexpected life event of her young husband’s diagnosis into her life’s calling. It is clear that her impact has only just begun.

staceyStacey Daub

CEO, Toronto Central Community Care Access Centre

Stacey Daub is the CEO of the Toronto Central Community Care Access Centre (TC CCAC). Under her leadership, TC CCAC has become recognized for its innovations focused on improving patient experience, outcomes and system value.

Five years ago, Stacey began to redesign the CCAC from the client’s point of view, starting with soliciting feedback from clients directly. Moving the organization to a population-based model that has since been implemented across all 14 CCACs, she has also led multiple initiatives that put clients at the centre and in control of their own health care, including:

  • Changing the Conversation (CTC): Through this remarkable initiative, TC CCAC partnered with service providers to allow personal support workers (PSWs) to work more flexibly with clients.
  • Instead of sticking to a given task list, they asked each client: “What is the most important thing I can help you with today?”
  • Integrated Client Care Program (ICCP): This initiative brought together all health care sectors to create one care team around the client at the point of care — the home. Seeing the system from the client’s point of view, transitions needed to be smoothed between homecare and EMS, Emergency Department and acute care.
  • Home First: This initiative gave seniors the choice of going home rather than assuming they should wait in hospital to go to long-term care.
  • The combined impact of these initiatives on patients and on shifting TC CCAC to a patient-centred culture has been tremendous.

A visionary leader who has pioneered this major cultural shift within a major homecare organization, Stacey also understands how vital staff engagement is to positive client experience. Her hard work and dedication to positive patient-centred change is truly inspirational.

ottawaThe Ottawa Regional Cancer Foundation

The Ottawa Regional Cancer Foundation is a non-profit community organization dedicated to helping people living with cancer by providing survivorship care, and funding innovative cancer research and clinical programs that improve access to better treatment options for patients.

In 2011, the Cancer Foundation’s President and CEO, Linda Eagen, spearheaded the opening of Canada’s first cancer survivorship centre. She and her team have also raised close to $60 million for cancer care and research in Eastern Ontario.

Following a cancer survivor’s needs assessment in 2008, the Cancer Foundation engaged a team of patients and health professionals to develop a new health and social care service that addressed a need for access to services assisting with the informational, physical, emotional, mental and practical needs of patients, as well as issues with health care system navigation and patient-provider interaction. Under Linda’s leadership, the team created the concept of Cancer Coaching, a personalized, person-centered service model that provides those whose lives have been touched by cancer with access to an accredited health professional who provides valuable information, support, and guidance through every stage of their cancer experience.

Since 2011, over 2,000 families have been helped through Cancer Coaching. This innovative health and social care model was developed “by the community for the community” and complements the work of medical professionals. At the core, Cancer Coaching helps people take an active part in their physical/mental health and wellness. As this new community-based model continues to garner national and international recognition, the Cancer Foundation is currently developing a certification program and launching a community of practice to spread the availability of this important service. The Cancer Foundation is also embarking on a multi-sectoral research project to demonstrate impact through the Cancer Coaching model, with the hope that the knowledge generated through this research will help other communities establish similar services.

south-east-toThe South East Toronto Family Health Team and Dr. Thuy-Nga Pham

The South East Toronto Family Health Team (SETFHT) is an academic Family Health Team (FHT) comprised of inter-professional health care workers that provide a full range of primary health care services and programs. SETFHT is committed to its vision of being ‘a leading academic family health team that improves the health of our community’.

In 2013, SETFHT introduced its Patient Advisory Council (PAC), a patient-led group helping to shape the organization’s patient care delivery, and a first among FHTs. Helping to ensure families and patients are engaged in all aspects of their health care, PAC’s members report directly to the Board of Directors and provide feedback on the delivery of programs, the content of patient materials and the direction of SETFHT’s objectives. This feedback has already led to significant organizational changes that are impacting the patient experience for the better, including an improved telephone appointment process and the addition of more processes by which patients can communicate with the members of their health care team.

SETFHT was also the first site in Ontario to implement a primary care Virtual Ward – a feat championed by Lead Physician, Dr. Tia Pham. The Virtual Ward initiative builds on the systems, staffing and daily routine of a hospital ward to provide case management to patients in the community beyond hospital walls. Interventions include daily phone calls to provide medical management in consultation with a family physician, and the coordination of additional health care services as required within the SETFHT team and to community supports. Dr. Pham also led the charge to re-introduce home visits for patients with cognitive and physical barriers, epitomizing her personal mantra of “nothing about us without us” through her continued commitment to improving health care services for all patients. Both she and SETFHT deserve recognition for blazing new ground in patient engagement in primary care.

to-east-generalMichael Garron Hospital

Michael Garron Hospital (formerly Toronto East General Hospital) is a full-service community teaching hospital, providing a full range of programs and services for patients, including mental health, rehabilitation and complex continuing care.

Developing a patient-centred culture is a key strategic priority at the hospital.

In 2011, Michael Garron Hospital took an innovative approach to capturing and disseminating the patient voice by filming interviews with patients to use as a resource for internal educational purposes. To gather these stories, a patient story toolkit was developed to help guide the interview process and maintain the unique perspective each story was likely to bring. Now featured at various leadership tables, committee meetings, and unit huddles, patient videos (PVs) form the basis for brainstorming, discussion and problem-solving throughout Michael Garron Hospital, enabling patients to directly impact the development of patient-centred care at the hospital.

Michael Garron Hospital has collected over 100 unique patient experiences through their Patient Video program to date, each contributing to the following four components of patient-centred change at the organization:

  • Excellence: PVs have created a forum for patients to discuss organizational challenges in an open, transparent and supportive fashion;
  • Quality Improvement: PVs are featured in meetings throughout TEGH, allowing the patient voice to be directly involved in the development of action plans and organizational initiatives, including patient education programs, and improved signage;
  • Influence: PVs allow leadership, physicians and frontline staff to engage with patients in a disarming and genuine fashion, enabling this information to be utilized throughout the entire organization; and
  • Innovation: TEGH is currently the only known hospital in Canada facilitating PVs in this manner to identify and address patient-centred quality improvement opportunities.

A former Michael Garron Hospital patient can attest to the impact of PVs. “The patient video program gave me the opportunity to share my story and allowed me to reveal areas where the hospital was doing well and where they could be doing better,” she says. “It was my voice and my story that helped initiate change in the hospital.”