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Frank Gavin

Frank Gavin

I have been involved with HDRN Canada since 2018 when…

Amanda Doherty-Kirby

When I was introduced to the concept of patient engagement…

Billy Pratt
Chair

Bill Pratt

I have worked and volunteered in the charitable sector with…

Brian Cho

Brian Cho

I began volunteering as a patient partner in 2020 to…

Cris Carter

Cris Carter

I am a volunteer with several organizations involved in patient…

Daniele Remy

Danièle Remy-Lamarche

I moved to Quebec in 1956, studying in Trois-Rivières and…

Denis Boutin

Denis Boutin

I had my first contact with the world of health…

Emily Gallant

Emily Gallant

My interest in health research began in 2022, when I…

Hani A. Al-Ubeady

Hani A. Al-Ubeady

I have extensive experience working with diverse populations in Manitoba…

Jason LeBlanc

Jason LeBlanc

My heritage is Inuk (Inuit) and Acadian, and I was…

Jaxon Diamond

Jaxon Diamond

I am in my third year of post-secondary study, focusing…

Lucille Duncan

Lucille Duncan

I am an Indigenous Carrier from Binche Whut’en in the…

Maureen Smith

Maureen Smith

I have a long history of collaboration with the health…

Mpho Begin

Mpho Begin

I am an engineer who is passionate about health care…

Rob Semeniuk

Rob Semeniuk

My endless curiosity combined with strong visual acuity led me…

Trinity Lowthian

Trinity Lowthian

I am a university student finishing my degree in Nutrition…

Frank Gavin

Frank Gavin

I have been involved with HDRN Canada since 2018 when I helped prepare the grant application that brought it into being. I chaired the interim Public Advisory Council and am a member of the HDRN Canada Executive and the Public Engagement Working Group. My first volunteer experience in health care was as a member, and later chair, of the Family Advisory Committee to SickKids Hospital starting in 1995. I was a public member of the Canadian Drug Expert Committee at the Canadian Agency for Drugs and Technologies in Health (CADTH) for six years and recently became a patient member of the Advisory Committee for the Post-Market Drug Evaluation Program at CADTH. From 2016 – 2021, I directed the Citizen Engagement Program of the CHILD-BRIGHT SPOR Network, which focuses on research to improve the lives of children and youth with brain-based developmental disabilities. In 2017, I was named best patient reviewer for the BMJ and have published articles in Healthy Debate, Paediatrics and Child Health, and the BMJ. For nearly 30 years I taught English at Centennial College in Toronto.

Amanda Doherty-Kirby

When I was introduced to the concept of patient engagement in 2020, I knew that I was in the right place. As someone with a basic science background who became a full-time caregiver in 2006, I wanted to contribute to research in a way that was meaningful and impactful, using the knowledge I gained as a parent navigating the health and education systems with my children. From 2017 – 2022, I was a member of a local district advisory council for education, which gave me an understanding of the importance of data to inform policy and practice. I am currently partnering on several projects related to COVID-19 and others that involve sharing or developing materials for patient engagement. I have been a member of the HDRN Canada Public Advisory Council since September 2022 and I am excited to be part of the process of using data to improve health and to educate the public about health data. I live in Prince Edward Island with my partner and six children.

Billy Pratt
Chair

Bill Pratt

I have worked and volunteered in the charitable sector with a drive for excellence and inclusion that engages others in the pursuit of being better for the world. My experience comes from working in the areas of international development, homelessness and housing, community corrections, and health and social services. Professionally, I am the CEO of Eden Care Communities, one of Saskatchewan’s largest charities, and my charitable governance experience has been gained by serving on many boards, including Kids Brain Health Network and Kids Brain Health Foundation. I am Vice Chair for the Jane Goodall Institute of Canada and I am a volunteer not-for-profit coach with the JDC West business school competition at the University of Regina. I hold a Master’s degree in Leadership, am a Certified Fundraising Executive, and have completed the Institute of Corporate Directors Not-for-Profit Governance Essentials Program. I have an unshakeable belief that tomorrow will be better than today.

Brian Cho

Brian Cho

I began volunteering as a patient partner in 2020 to act as an advocate to improve patient input in research. When I learned about the HDRN Canada Public Advisory Council, I was ecstatic at the opportunity to be involved and further my knowledge about health data. In my professional life, I am a resident physiotherapist in Nova Scotia and a graduate of the Doctor of Physiotherapy Program from Melbourne University in Australia. Since graduation in 2015, I’ve worked in Australia and Canada and as a result of my clinical experiences, I have developed a deep appreciation for health data to inform clinical practice and act as a driver to improve community and public health outcomes. I am grateful for this opportunity to sit on the Public Advisory Council, and I am incredibly excited to be involved in these efforts to help improve health outcomes in Canada.

Cris Carter

Cris Carter

I am a volunteer with several organizations involved in patient research and patient engagement, including as a Community Representative on the Health Research Ethics Board; as a Patient Representative for the Patient Advisory Council, NL SUPPORT, Faculty of Medicine at Memorial University; as a Patient Representative on the Citizen Advisory Committee for CIHR Strategic Planning 2020; as a Patient Partner with NL and Diabetes Action Canada – Virtual Care Demonstration Project; and as a Patient Partner with the SPOR Evidence Alliance. My volunteer activity in health care began when I retired from Bell Aliant after a career in communications, marketing, advertising and training. I have lived experience as a caregiver and an interest in promoting patient engagement in research.

Daniele Remy

Danièle Remy-Lamarche

I moved to Quebec in 1956, studying in Trois-Rivières and Montreal. I went on to work at Université du Québec à Montréal for 23 years, where my first job was as a technician working on the automation of the library’s acquisitions department. I then worked in the IT department, during which time I also lectured at UQAM’s School of Management Sciences. Over the course of my career, I volunteered in a number of activities held by various organizations. Since retiring, I have helped out in a daycare centre and a children’s hospital. I have taught seniors, and for three years I hosted a kitchen for people living in a residential setting, called Cuisinons entre aînés (cooking with seniors). That led me to sit on the board of the Groupe Promo-Santé Laval, a health promotion non-profit in Laval.

Denis Boutin

Denis Boutin

I had my first contact with the world of health research in 2015 as a participant in a research project, then in 2017 as a committee member aiming at promoting and involving patients as research partners. I am interested in and passionate about all measures, ideas and projects leading to a participatory and dynamic integration of patients in research. I am currently the chair of the Comité stratégique patient-partenaire du Centre de recherche du centre hospitalier universitaire de Sherbrooke, a member of the Communauté de pratique des patients et citoyens partenaires de la recherche en santé au Québec (CPPCP-RSQ) de l’Unité de soutien SRAP du Québec, and part of two research projects with Diabetes Action Canada. I recently became interested in the issue of managing citizens’ digital health data. Before retiring in 2019, I was a computer engineer specializing in geomatics.

Emily Gallant

Emily Gallant

My interest in health research began in 2022, when I was diagnosed with Nasopharyngeal Carcinoma, a form of soft tissue cancer and became heavily involved in patient research and patient engagement. Since then, I have volunteered through several organizations including Young Adult Cancer Canada; I also sit on the Adolescent and Young Adult Cancer Priority Setting Partnership Steering Group as a patient partner. I hold a Bachelor of Science in Biochemistry and Chemistry and am in my final year of a Bachelor of Science in Nursing. I strive to use my advocacy role to help marginalized populations. I am both Mi’kmaq (through my dad) and a first-generation Canadian (through my mom), lenses I seek to utilize in my work with the Public Advisory Council.

Hani A. Al-Ubeady

Hani A. Al-Ubeady

I have extensive experience working with diverse populations in Manitoba and have served the settlement and integration sector for over 20 years. I am co-founder of the Ethno-cultural Council of Manitoba – Stronger Together, as well as co-founder of the Community Engaged Research on Immigration Network (CERI Network). I pioneered and directed the first comprehensive Indigenous Orientation Tool Kit for the settlement sector in Manitoba and beyond. I am a Certified Canadian Counsellor and marriage and family therapist, as well as a regulated Immigration Consultant. My current work as a Cross-Cultural Mental Health Specialist with Winnipeg Regional Health is to facilitate connections and bridge the formal mental health system with the ethnically-diverse newcomer population in Winnipeg. I have completed degrees in the areas of political science, religion and culture, and immigration consultancy as well as marriage and family therapy. My goal as a family therapist is to change the world one family at a time.

Jason LeBlanc

Jason LeBlanc

My heritage is Inuk (Inuit) and Acadian, and I was born and raised on the Eastern Canadian coastline of Goose Bay, Labrador. My life has been a mix of the traditions and modern realities of the Inuit in urban Canada. Growing up, I embraced Inuit traditions like hunting and fishing in my homelands, while attending school and later Acadia University. I have dedicated my professional life to the empowerment of urban Inuit, beginning my career with Tungasuvvingat Inuit in 1999, which grew as a leader in urban Inuit community matters and advocacy at a national level under my leadership. This facilitated many successes for the betterment of Inuit, including broad enhancement of services and programming to support economic development, housing, gender equality, anti-racism, cultural services, trauma-informed care, food security, research, policy development and many other critical issues. I co-founded Big Bay Consulting, where I offer executive-level services based on my experiences and knowledge. I am a passionate and proud father of two children.

Jaxon Diamond

Jaxon Diamond

I am in my third year of post-secondary study, focusing on Kinesiology at the University of Regina. When I don’t have my head in the books, you can find me in the small but diverse community of Nipawin, Saskatchewan. In this town, I have taken part in many experiences such as coaching youth soccer and Special Olympics, instructing swimming lessons, lifeguarding and working as a cashier at a local grocery store. From engaging with my community, I have developed a passion to improve the well-being of our population. Once I complete my studies, I hope to bring my training back to benefit my growing community. Being a part of the Public Advisory Council is an exciting opportunity to further improve health data and research in Canada.

Lucille Duncan

Lucille Duncan

I am an Indigenous Carrier from Binche Whut’en in the Northern Interior of British Columbia. In 2005, I received a Social Work Diploma from the College of New Caledonia and later received a Mental Health and Addiction certificate from the University of Northern BC. Since graduation, I have been employed at Central Interior Native Health Society as an Indigenous Support Worker and now as an Elder Wellness Worker. In 2014, I was elected to sit on the Board of Education for Nechako Lakes for School District 91 and served for one term, which allowed me to gain experience in developing and implementing policies with a collaborative team of educators and administrators. I am an elected board member of the Pacific AIDS Network and sit on the committee advisory for research studies with EQUIP at the University of British Columbia.

Maureen Smith

Maureen Smith

I have a long history of collaboration with the health care system following a rare disease diagnosis in childhood. For over 20 years, I have been bringing a patient or citizen perspective to provincial, pan-Canadian and international advisory groups and committees on topics such as research ethics, rare disease policy and involvement in clinical trials. I am an enthusiastic, committed patient partner on several patient-oriented research projects, with a special interest in patient and citizen engagement in methodological research. As chair of Cochrane’s Consumer Network Executive and a member of the COMET Initiative’s People and Patient Participation, Involvement and Engagement Working Group, I have the opportunity to learn and collaborate with international organizations. I am the chair of Ontario’s SPOR Support Unit’s Patient Partner Working Group and have served as a patient member on the Ontario Committee to Evaluate Drugs since 2014 and the Ontario Health Technology Assessment Committee for the past six years.

Mpho Begin

Mpho Begin

I am an engineer who is passionate about health care technology and how it helps improve people’s lives. My curiosity uprooted me from a rural village in Botswana and brought me to Canada where I graduated with a Master’s degree in Computer Engineering from the University of Manitoba. I volunteer with various organizations, including Immigrant and Refugee Community Organization of Manitoba, George and Fay Yee Centre for Healthcare Innovation and SPOR Primary and Integrated Healthcare Innovations Network.

Rob Semeniuk

Rob Semeniuk

My endless curiosity combined with strong visual acuity led me to an exciting career in television news as a video journalist. I spent 20 years in television newsrooms across western Canada exploring what makes the world, and people, tick. When I switched gears and entered corporate communications, I brought my storytelling chops and natural news sense to share compelling stories of entrepreneurial and business successes. I grew up in rural Alberta, where farm life nurtured a strong sense of family, community and a commitment to hard work. My deep connection to and respect for Indigenous culture was instilled by my maternal grandmother, a woman whose childhood memories as a Ukrainian settler include the kind help and fellowship of the Cree people. I am married to Sharon, a registered nurse and together we have three grown children.

Trinity Lowthian

Trinity Lowthian

I am a university student finishing my degree in Nutrition & Food Sciences at the University of Ottawa and have been involved in research and patient engagement since 2019. I started as a member of the Youth Advisory Committee for The Canadian Collaborative for Childhood Cannabinoid Therapeutics and have gone on to work on projects in patient engagement with organizations including CIHR, the Canadian Nutrition Society and Clinical Trials Ontario. Being a member of HDRN Canada’s PAC interested me because I want to contribute the youth perspective to this national group as well as learn more about health data in Canada. Aside from academics and research, I am also a Team Canada para-fencer and compete internationally in wheelchair fencing and nationally in para-nordic skiing.

Terms of Reference

Terms of Reference

Privacy and Ethics Guidelines

Privacy and Ethics Guidelines

Annual Report, 2020-2021

Annual Report, 2020-2021

Annual Report, 2021-2022

Annual Report, 2021-2022

Annual Report, 2022-2023

Annual Report, 2022-2023