Health Data Research Network Canada (HDRN Canada) is committed to including members of the public in decisions about health data through its Public Advisory Council (PAC). Currently, the PAC is comprised of 12 members with diverse experiences related to geography, age, gender identity, occupation, language, culture, ethnicity and other characteristics.
The purpose of the PAC is:
- To advise HDRN Canada about its short-term, medium-term, and long-term priorities
- To advise the HDRN Canada about how to inform the public about its achievements, challenges, and plans
- To identify and discuss new kinds of data, especially “patient-generated data”, that some or all data collectors and holders within HDRN Canada might consider acquiring
- To advise HDRN Canada on how to go beyond the PAC and engage with, and take advice from, the public at large or particular “publics”
Frank Gavin, Chair, Public Advisory Council
I have been involved with HDRN Canada since early in 2018 when I helped prepare the application for the CIHR grant for the SPOR Canadian Data Platform. I chaired the interim Public Advisory Council and is a member of the HDRN Executive and the Public Engagement Working Group. Since 2016 I have been the Director of Citizen Engagement for the CHILD-BRIGHT SPOR Network, which focuses on research to improve the lives of children and youth with brain-based developmental disabilities and their families. For different periods since 1995 I have chaired the Family Advisory Committee at SickKids Hospital and the Canadian Family Advisory Network and served as a public member of the Canadian Drug Expert Committee at the Canadian Agency for Drugs and Technologies in Health.
I was made aware of HDRN Canada early 2020 through the Maritime SPOR Support unit. I began volunteering as a patient partner in 2020 to act as an advocate to improve patient input in research. When learning about the Health Data Research Network Public Advisory Council I was ecstatic at the opportunity to be involved. 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 had the pleasure of working in Australia and Canada, and as a result of my clinical experiences, I have developed a deep appreciation for health data to not only inform clinical practice but also act as a driver to improve community and public health outcomes. I am grateful for this opportunity to act on this council and I am incredibly excited to be involved in these efforts to help improve health outcomes in Canada and further my knowledge about health data.
As a recent graduate of the BA in Health Sciences at Simon Fraser University, I have experience spanning quality of life research, healthy cities, and social enterprise work. For over 6 years, I have been privileged to coach alpine skiing in BC. Currently, I am a research assistant with the Health Economics Research Unit at the BC Centre for Excellence in HIV/AIDS. I am passionate about improving population health, wellbeing, and social justice. I am looking to use health economics, intersectoral, and intersectional approaches to facilitate a shift toward healthy and equitable public policy.
I am a volunteer with several organizations involved in patient research and patient engagement, including the following: Community Representative, Health Research Ethics Board (HREB); Patient Representative, Patient Advisory Council (PAC), NL Support, Faculty of Medicine, Memorial University; Patient Representative, Citizen Advisory Committee for CIHR Strategic Planning 2020; Patient Partner, NL and Diabetes Action Canada - Virtual Care Demonstration Project and Patient Partner, 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.
I first came to Quebec in 1956. I studied in Trois-Rivières and Montreal. I went on to work at Université du Québec à Montréal (UQAM) for 23 years. 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. In the course of my career, I also 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 about 3 years I hosted a kitchen for people living in a residential setting. The activity was called Cuisinons entre aînés (cooking with seniors) and led me to sit on the board of the Groupe Promo-Santé Laval (GPLS), a health-promotion non-profit in Laval. I am also a member of DAC Canada.
In 2015, I had my first contact with the world of health research. First 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 particularly interested and passionate about all measures / ideas / 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 (CRCHUS) », 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 2 research projects with Diabetes Action Canada. I recently become interested in the issue of managing citizens' digital health data. Up to 2019 I was a computer engineer specializing in geomatics. I am now retired.
I grew up in a small town in Southwestern Ontario. After moving to the city to study Social Justice and Peace, I recently returned to join my families’ Financial Planning practice. I am a Certified Financial Planning professional with a passion for understanding how behavioral economics impacts people’s decisions. Soon after my first child, I had the opportunity to join the ICES Public Advisory Council, and was impressed with the dedication, transparency, and true desire to do good that I found. This was where I first learned about health data and the work that is going on surrounding it. I was privileged to be part of that group from its inception throughout the last two years. Being a new mother inspired me to get involved but engaging with other enthusiastic individuals who are excited about making positive impacts is what has propelled me to continue further on this journey.
Lucille Duncan is Indigenous Carrier from Binche Whut’en in Northern Interior of BC. In 2005, she received her Social Work Diploma from the College of New Caledonia and furthered her education and received her Mental Health & Addiction certificate from University of Northern British Columbia. Since her graduation Lucille has been employed at Central Interior Native Health Society (CINHS) as the Indigenous Support Worker and now as an Elder Wellness Worker. In 2014 Lucille was elected to sit on Board of Education for Nechako Lakes for School District 91. Lucille served on the board for one term which allowed her to gain experience in developing and implementing policies in a collaborative team of educators and administration. Lucille is an elected board member of Pacific AIDS Network and also sits on the committee Advisory for research studies with EQUIP, University of British Columbia.
Marianne is an experienced facilitator, researcher and advocate having worked in the gender based violence field for over 30 years. She has also been involved for 26 years in health regulation as a public member on self-regulating professions gCoverning councils. She was interim chair of Echo Improving Women’s Health in Ontario-a knowledge translation agency hence exposed a bit to health data. Marianne has the distinction of being a woman with a disability (albinism low vision). She holds a Masters in cultural/medical anthropology from the University of Tennessee. Marianne is the founder of Network of Women with Disabilities NOW, a Facebook group dedicated to the issue of sharing information on the issue of violence and women with disabilities. She lives in Woodstock, Ontario.
Mpho is an engineer passionate about healthcare technology and how it helps improve people’s lives. Her curiosity uprooted her from a rural village in Botswana to Canada where she graduated with a Master’s degree in Computer Engineering from the University of Manitoba. She volunteers her time with various organizations including Immigrant and Refugee Community Organization of Manitoba (IRCOM), George and Fay Yee Centre for Healthcare Innovation (CHI) and SPOR Primary and Integrated Healthcare Innovations Network (PIHCIN).
After graduating from Laurentian University in Law and Justice and Business Administration, I started working in British Columbia. I stayed there several years before returning to my home province, at which point I entered the field of law as a bail supervision program coordinator, a provincial prosecutor and a regional manager of the child custody and support enforcement program. In 1990, I was called to the bench as a bilingual justice of the peace, a position I held until retiring in 2016.