In 2016, a group of patient and family advisors from across Canada decided to come together to form the Patient Advisors Network (PAN).
Since 2011, Alies Maybee has been a patient advisor in various areas of healthcare, notably in health research.
She has evaluated research for CFN (Canadian Frailty Network) and for ARTIC (Adopting Research to Improve Care). She leads the Patients Canada SPOR (Strategy for Patient Oriented Research) Demonstration project examining the experience of patient/caregiver as partners in research and is a PaCER (Patient and Community Engagement Research) program graduate.
Alies has been trained by CIHR to deliver patient oriented research training. She also conducts workshops for partnering with citizens in research
Apart from research, she is a Patient and Family Advisor and co-chair of the Community Engagement Council at St. Joseph’s Health Centre; a member of the Toronto Central LHIN Council and participates on several working groups at HQO (Health Quality Ontario) notably on patient experience measurement.
I empower patients and families, challenge assumptions, and create dialogue among stakeholders. I reach out to marginalized groups and inform them of their rights, removing barriers so they can actively participate in the decision-making process.
Weaving accessibility and inclusivity into patient and family centred care and patient safety will ensure a healthy and equitable community. I have always kept in mind these two elements when reaching out to other groups. Worked with a wide variety of communities, ranging from athletes with intellectual disabilities at the Special Olympics to families at risk with young babies and Deaf adults.
My inquisitive passion for health equity stems from my own lived experience in negotiation across differences as a woman and as a visible minority. I recalled my mother’s struggles as an immigrant and her vulnerability in the healthcare system and I saw how information, understanding and communication could either facilitate or block healing and caring. I like to harness patient and family voices to be a force for positive change in healthcare.
Patient engagement, health equity, diversity, inclusion, accessibility, patient and family centred care advocate, patient rights, community outreach, media interviews, facilitator, public speaking, teaching, fundraising
Angela Morin has been partnering with healthcare professionals in quality improvement initiatives, policy and program development as a Patient and Family Experience Advisor at Kingston General Hospital since November 2011. She believes partnering with patients and families at every level of the healthcare system is the right thing to do and is greatly inspired by those who want to collaborate and share their experience to help make healthcare better.
She currently sits as Co-Chair of the KGH Patient and Family Advisory Council. She is a patient advisor for various organizations including CFHI, Accreditation Canada, HealthCareCan and the Southeast Regional Cancer Centre. She has been a Minister of Health appointed member of the Ontario Health Quality Council (HQO) since November 2014.
Angela’s personal experience as a patient and while supporting loved ones through their healthcare journeys, continues to motivate her to bring the patient and family voice to health care.
Annette’s experiences with the health care system as a patient have led to a passion to have the patient voice included in health care decision making. Because of this she is involved at her local hospital, Michael Garron, as a member of the Community Advisory Council. She is a patient partner on several research teams and has been a grant reviewer for The Arthritis Society. She has served as a Health Mentor for the Interdisciplinary Education Program of the University of Toronto for the past six years and was a 2014 MedX ePatient Scholar.
Council Member of the College of Occupational Therapists Ontario; Member of Patients for Patient Safety Canada; Member of Regional Quality Table for the Toronto Central LHIN; Member of Patient Advisors Network
Board Member: Sjogren’s Society of Canada, Canadian Arthritis Patient Alliance (CAPA), Arthritis Patient Advisory Board of Arthritis Research Canada (ARC)
Brian Clark, Chair
I am retired from the software tech sector. I have managed software tech companies in New Zealand, Canada, UK and the US. My interest in the healthcare sector is in helping the culture shift to a patient focus. This work is informed by my experience in tech firms in shifting cultures from technology to a customer focus. My work with Patients Canada and PAN (Patient Advisors Network) includes collaboration with healthcare research networks, consulting with healthcare institutions and speaking at healthcare conferences. I am currently partnering with three Canada healthcare research networks, helping them work with patients to ground research in improving the patient experience.
I welcome opportunities to advance engagement of patients, family members and the public in the difficult and complex work of healthcare innovation, safety and culture change. Developing patient leadership and capacity has become my passion to expand involvement of service users, carers, and communities for better health and healthcare.
Voluntary citizen-patient roles include advisor, keynote speaker, course instructor, researcher, project team member, conference resource, awards adjudicator and workshop facilitator. My partners are fellow patient advisors, clinicians, managers, board members, academics and professional leaders at home in Vancouver and right around the world.
Recognized as Honorary Lecturer in the Department of Family Practice at the University of British Columbia, inaugural 2014 Canada Patient Safety Champion, and runner-up in the inaugural 2017 BC Quality Award for Leadership in Advancing the Patient Voice.
My full-time commitment to healthcare improvement arises from premature widowhood in 2008 following preventable harm, unacknowledged as a system failure and ignored as an opportunity for organizational learning.
I am passionate about the content and forms of communication and about the people I communicate with! Communication facilitates the increase of knowledge and translates it to new domains. Both clarity and creativity are at the core of optimum communication. My communication-based work for various organizations, whether in the private, not-for-profit, or public sector, has included teaching and training, research and advocacy, team development and leadership, working across different cultures and languages, and writing and/or editing.
Denyse provided care for her Dad for 15 years from 1999 – 2014; she continues as a care provider for her husband, advocating for effective, quality care not only for him, but for others living with chronic conditions. Like many citizens across Canada, her health care challenges have been in obtaining timely and quality co-ordinated, integrated services across the following health system elements: Primary care, Specialists Services, wait times in ER, tests, surgeries, Home/Community care, Retirement home care, mental health care, Long Term Care and Palliative Care. Denyse’s experiences since 1999 have shown the Ontario “health system” to be complex and confusing to navigate. Processes, systems, procedures and communications have significant gaps and/or are ineffective and some elements also lack sufficient resources. Having a high need for both patient/caregiver education, support, Denyse believes there are solutions. To that end she joined Patients Canada in 2011, where she has been able to share experiences among other stakeholders enabling all of us to see the misalignment, common gaps in our health system and the consequences these have on the lives of patients and their caregivers, as well as immense and growing costs to our health system. She joined PAN to connect with others, like herself, who realize through our experiences we play a significant role not only contributing these, but also have constructive suggestions that can improve the quality, sustainability and cost effectiveness of our health care services.
Current Health Care Involvement:
- A Patient Advisor, Denyse participates in health related conferences and research projects, some of which included: Improving Palliative Care; TVN’s Care of the Frail and Elderly, and panel member re “ A National Health Strategy for Seniors”, at the OLTCA 2015 Conference, moderated by Andre Picard, Participant at the McMaster’s Stakeholder Forum on: Strengthening Care for people With Chronic Diseases.
- Volunteers at Taunton Mills, Schlegel Villages’ Long Term Care Home, facilitating residents’ programs and one-on-one visits with residents. She enjoys Schlegel Villages (RIA) Research In Aging pilot initiatives as their programs provide dignity and respect “creating meaningful and shared activities” among residents.
- Publishes Our Health Care, Our Choices – providing validated health related information to a controlled circulation comprising 600 subscribers
- Chaired a Living Well Committee in her community, engaging credentialed educators, to provide health management workshops, enabling patients/caregivers to make the best informed decisions for themselves and their loved ones
Areas of Interest:
Managing Chronic Diseases, Improving Long Term Care, Palliative Care and Supporting Caregivers
Emily Nicholas Angl
Emily’s patient journey has taken her through ER’s, OR’s, MRI’s and many acronyms in between. Her broad range of experiences led to a keen interest in how patients can become partners in their own care and in health system improvement.
Emily has been helping bring the patient voice to Canadian health for over eight years. She previously sat on the board of Patients Canada and has worked as a patient advisor and patient engagement consultant with hospitals, government agencies and other organizations across Canada. Emily also facilitates workshops for both patients and providers which explore strategies for, and barriers to, patient engagement.
Emily now works as Director of Health Engagement and Communication with Reframe Health Labs, founded by Dr. Mike Evans, where she specializes in bringing the patient perspective to RHL’s evidence-based approach to health and wellness communication.
Heather Thiessen has been a patient in receipt of care from our healthcare system for the past 25 years for two chronic neurological conditions. It is through this she has been able to gain insight into the inner workings of healthcare and began to see the good and bad. When Saskatchewan implemented the works of Patient and Family Centred Care, she helped by working closely with them and by sharing her own stories and experiences over the years. She was also able to bring that patient voice to other advisory committees and working groups.
She has been asked to speak at several conferences both nationally and internationally but also at the local level. Anywhere she can promote and illustrate the importance of patient partnership, she will go and help the understanding of this collaboration.
She has worked closely with the Canadian Foundation for Healthcare Improvement, as a coach to two teams as they incorporated ways to bring the patient voice into healthcare improvement. Most recently she enjoys mentoring health sciences students, sharing the work she is doing with her own hospitals and providers on the importance of Patient and Family Centred Care. Most of the mentoring is with medical, nursing and pharmacy students. Change for future patients will come when our future healthcare providers see the importance of patient partnership.
Mary Anne LeVasseur
Mary Anne Levasseur is Coordinator and facilitator of Peer-driven Family Support in the Prevention and Early Intervention Program for Psychosis (PEPP-Montreal), Douglas Mental Health University Institute. Mary Anne assists families of youth affected by psychosis-related mental health concerns to navigate the mental healthcare system. She also facilitates family support group meetings where families can share stories, ideas as well as exploring ways to overcome challenges and barriers in caring for a loved one suffering from mental illness, as well as exploring various ways to promote self-care.
Mary Anne helped establish and continues to contribute as a member-advisor of the ACCESS Open Minds Family and Carers (AFC) Council, part of the ACCESS OPEN MINDS SPOR (Strategies in Patient Oriented Research) Network, a joint initiative of Canadian Institutes of Health Research (CIHR) and the Graham Boeckh Foundation. The principal objectives of this national research project are to bring about a transformational improvement in youth mental health outcomes by making high-quality services more accessible in a timely manner to youth aged 11 to 25.
The AFC’s primary objectives within this project concern the crucial role families and carers play in caring for and supporting their youth with mental health concerns. The Council is comprised of family and carer representatives who collaborate on family engagement and family peer support initiatives with families and youth, mental healthcare providers, researchers, policy makers, community organizations at 16 sites across six provinces and one territory in Canada.
Mary Anne’s dedicated commitment to families and caregivers of persons affected by mental health problems stems from and reflects her ongoing care and support of her own son. Mary Anne has extensive experience in peer support work with family and caregivers, and participates in various family advisory committees and family and caregiver-focused research projects. She hopes that sharing her experience, knowledge and passion in supporting families and caregivers in navigating mental healthcare systems helps them as they assist their loved one, and helps ensure a needed focus on families and caregivers in mental health services and research.
Sandra Zelinsky is using her experience as a patient to change the philosophy of patient engagement in research which includes patients in all phases of the research process from decision-making, priority setting, data analysis through to dissemination and knowledge translation. She is a graduate of the Patient and Community Engagement Research (PaCER) program within the Institute for Public Health(IPH) at the University of Calgary. She is using her research skills to advance Patient Oriented Research and was recognized by the Canadian Patient Safety Institute as a Patient Safety Champion for her work on a PaCER study done on behalf of the Alberta Surgery Strategic Clinical Network.
Sandra has recently completed the Canadian Institute for Health Research (CIHR), Strategy for Patient Oriented Research (SPOR) National Foundational Train the Trainer Curriculum and is using her combined experience to build capacity amongst all stakeholders. She is a co-lead Patient Engagement Researcher on the National SPOR Chronic Disease Network, Inflammatory Bowel Disease study called IMAGINE, a Patient Research Partner on an Alberta SPOR study developing a framework for Patient Centered- Quality Indicators, a Patient Co-Investigator on a PhD study looking at A Value Driven, Co-Designed Framework for Sustained Patient Engagement and a member of the CIHR review committee.
Her work in research has provided her the opportunity to present at several National and International conferences as well she has been asked to chair and/or co-chair at various conferences and meetings. She hopes to be able to share her knowledge and experience to grow the area of Patient Oriented Research.