Julie Drury is a powerful voice for patients and their families who are navigating Ontario’s healthcare system. Recently named by the Minister of Health and Long Term Care of Ontario to be the Chair of the Patient and Family Advisory Council, Julie brings a uniquely personal lens to the job. A self described “CHEO Mom”, Julie and her family spent over eight years navigating the healthcare system with Julie’s beautiful daughter Kate, who died in 2015 of mitochondrial disease.
Since that time, Julie has been extremely active in raising awareness of rare disease, and raising funds – over $100,000 – for the MitoCanada Foundation. She also speaks publicly, and within the medical community, to promote understanding of the needs of families and patients as they struggle with a devastating diagnosis. Julie took the worst blow a human can suffer – the loss of a child – but stood back up to become a champion and advocate for families and patients when they need it most. For this, she is very much one of #150GreatPeople in Ottawa, and here, Julie Drury answers the questionnaire:
What makes Ottawa special to you?
Ottawa is a big city with a ‘small town’ feel. I came here from Prince Edward Island over 27 years ago to attend the University of Ottawa, and though I was nervous of coming to live in a big city, I never felt out of place. I’ve lived in many different Ottawa neighbourhoods; Sandy Hill, the Golden Triangle, the Glebe, Hintonburg, and now Westboro. There has always been such a strong sense of community wherever I lived. People who know one another, who say ‘hello’ on the street, and who help out when help was needed. Never was that sense of incredible community support and spirit more evident and important to me and my family as it has been over the past 10 years. It’s the incredible communities of Ottawa that make us so special.
What do you love most about living and working in Ottawa?
I’m a pretty active person, and I love the many ways we can access physical activity and the outdoors in our city. I often run and bike along the Ottawa River and Rideau Canal, and really enjoy our ‘Sunday Bike Days’ over the summer. I love that we have a beautiful ‘greenbelt’ area filled with trails for hiking, walking, biking, running, and cross country skiing. I’m excited that we now have groomed ski trails along the Ottawa River in the winter for both skate skiing and classic skiing.
As a family, we also take advantage of how close the Gatineau Park is. I really enjoy biking and trail running, and we are also a big downhill ski family and are often at the ski hills in the Gatineau Park over the winter. There are so many opportunities to be active in Ottawa and our National Capital area.
The work that you do helps to make Ottawa a better place – why is this important to you?
I’ve recently been appointed by the Minister of Health and Long Term Care of Ontario to be the Chair of his Patient and Family Advisory Committee. I am so pleased and honoured to be in a leadership position where I can be the voice of patients, families, and caregivers who are navigating our health care system in Ontario. Much of my experience has been as a ‘CHEO mom’ with my daughter Kate. We went through an incredible journey together over 8 years because of her rare mitochondrial disease. I’ve had many opportunities to share our story with medical students, nurses and staff, and to act as a patient advisor in Ottawa and for the province. I’m proud of that experience and what I have been able to contribute to make CHEO a better place for patients and families.
Through fundraising with Team MitoCanada during Ottawa Race Weekend, I’ve helped raise over $100,000 for awareness, support, and research with the participation of over 100 local Team Mito runners. This money helps support the MitoCanada Foundation, a national foundation for mitochondrial disease, and has also supported important mitochondrial disease research that is based here in Ottawa.
As a patient/family peer reviewer with the Rare Disease Foundation, I am part of a larger community of researchers, clinicians and patient/family advisors that help assess micro-grant applications toward important research interests in the rare disease community. Rare disease is an isolating experience, and helping to bring awareness to these conditions and the research needed brings a voice to Ottawa families living with undiagnosed and rare disease.
The Assessment Technical Committee of Health Standards Organization also allows me to speak and advise on behalf of patients and families on technical standards for assessing hospitals and other health care facilities. As a patient and family advisor, I have the opportunity to review, assess, and provide advice and feedback on the standards for assessing our health care facilities, including those here in Ottawa.
All of these roles and efforts combined help me to be a voice for patients, families, and caregivers who are experiencing our health care system. My hope is that by providing leadership toward better patient engagement, we can improve and build on quality, safety, and the patient/family experience of our health care system in Ottawa and across Ontario.
You give back to the Ottawa community in various ways – is there one Ottawa-related achievement of which you are most proud?
I am most proud of my work with Team MitoCanada Ottawa and our ongoing participation as a registered charity at Ottawa Race Weekend. We have an incredible team of over 100+ runners that has grown each year. Team Mito participates in all events at Ottawa Race Weekend, from the Family 2k Walk/Run, to the longer half-marathon and full marathon events. To date, our amazing team has raised over $100,000 for mitochondrial disease awareness, research and support. In 2016, 6 months after my daughter Kate died, Team MitoCanada Ottawa raised over $58,000 as part of the Ottawa Race Weekend Scotiabank Charity Challenge. This money was given as a grant to the CHEO Research Institute to conduct mitochondrial disease research toward better treatments and hopefully – one day – a cure for mitochondrial disease.
What do you hope for Ottawa in the future?
I hope that Ottawa continues to be a place where families can thrive and feel supported. Where we have excellent health care and access to services. And a place where everyone’s story matters.