Cystic Fibrosis Canada’s 17th Broken Arrow Conference, hosted in Toronto from May 2nd – 4th, was a great success. The event brought together many of the key players in Canada’s cystic fibrosis (CF) community, including physicians and nurses from CF clinics across Canada, as well as CF researchers, scientists, pharmaceutical industry representatives, CF Canada Board members, individuals living with CF and their family members.
The theme of this year’s conference was Patient Engagement. Day one started with the funny and charismatic duo from Sickboy Podcast Jeremie Saunders and Brian Stever, who use humour to get to the “meat” of the conversation helping those with life threatening illnesses feel comfortable to share their stories. Day one continued with exploring patient-orientated research focusing on patient perspectives and preferences, building capacity, working with patients as partners and involving patients in the design and deliveries of research and clinical trials. In the afternoon, the conference broke into working groups, facilitated by the morning speakers, where discussions on how to implement patient engagement strategies into one’s practice continued. Speakers on day one included Esther Halton from PaCER, Deborah Marshall from IMAGINE SPOR Network, Annette Majnemer from CHILD-BRIGHT, Lisa Stewart from PCORI and Jennifer Preston from GenerationR.
Day two of the Broken Arrow Conference continued with the theme of Patient Engagement focusing strongly on patients as partners. The underlining message of the day was that patients bring a tremendous amount of knowledge and experience to the table – and that they should be recognized for this. Speakers on day two included Nicolás Fernandez, a member of the CIHR Standing Committee on Ethics and Claire Edmondson who shared research on the CLIMB-CF study.
Day two continued with two panel discussions with the CF community. The first panel included CF patients and caregivers continuing the conversation on patient engagement in research. The panel included two patients, Ronnie Sharpe from Cystic Life and co-founder of Savvy Cooperative, Sandy Sufian, a PCORI ambassador and a Co-Founder of the Cystic Fibrosis Reproductive Sexual Health Collaborative, and Lina Bhardwaj, a mother of a 13-year-old with CF. Topics discussed were quality improvement, research, clinical trials, patient experience and breaking down barriers.
Day two finished with a panel discussion on infection prevention and control with two CF physicians, Dr. Valerie Waters and Dr. Elizabeth Tullis, along with two individuals living with CF, Chris Kvam and Brenda Chambers-Ivey. Dr. Waters and Dr. Tullis focused on the safety concerns of infection prevention and control, and discussed how the guidelines came into action and why they are so vital to the health and safety of those living with CF. Chris and Brenda shared their opinions on the guidelines speaking to the importance of understanding the consequences of infections and how they quantify risks everyday by choosing risk versus reward when they leave their home.
Graphic artists from Think Link Graphics were present throughout the conference, capturing key themes of the presentations visually live on-site, which can be found in the following links:
- Ethics Guidelines and CLIMBCF
- Infection Prevention and Control
- Involving Young Patients
- Listening to Patients
- Patient and Caregiver Panel
- Research patient Engagement
A full live stream of the conference can be found here.
The 17th Broken Arrow Conference was sponsored by Vertex Pharmaceuticals (Canada) Inc., Horizon Therapeutics, Merck Canada Inc., Gilead Science Inc, AbbVie, Inc., Mylan, Trudell Medical International and Innovative Medicines Canada. We are grateful for their support.