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Volunteer Advocate
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16th Biennial Broken Arrow Conference

Cystic Fibrosis Canada’s recent 16th biennial Broken Arrow conference, hosted in Toronto May 4-6th 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 the 42 CF clinics across Canada, as well as CF researchers, pharmaceutical industry representatives, CF Canada Board members, and family members of people living with the disease.

The theme of this year’s conference was Clinical Trials & the Digital Health Revolution. Day one explored clinical trials, with a focus on the potential to develop a clinical trials network in Canada. Access to clinical trials – studies that test the safety and efficacy of potential new treatments – is important for the CF community because it could mean faster access to improved medications.

Speakers on day one included Dr. George Retsch-Bogart, Faculty Director of Network Operations at the Cystic Fibrosis Foundation’s Therapeutics Development Network (TDN) in the United States. TDN, the world’s longest running CF clinical trial network, began in 1998 with 8 research sites, and has scaled up since then, currently sitting at 89 research sites.

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Day two of the conference explored the digital health revolution, which is about bringing information technology to healthcare. An overriding theme of the discussion was how to bring patients and families into the centre as active participants in their own care, with patient engagement referred to as “the blockbuster drug of the 21st century”.

Speakers on day two included Dr. Edward Brown, founder and CEO of the Ontario Telemedicine Network (OTN), who spoke about the impact of programs such as telehomecare, where patients can connect daily with a healthcare professional through virtual technology in the comfort of their own home. Other digital health platforms include home video apps and remote support groups, which are ideal for people with CF who cannot meet in-person due to infection prevention and control issues.

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Graphic facilitators from Think Link Graphics were present throughout the conference, capturing key themes of the presentations visually live on-site, which spurred further small-group discussion on conference topics. Cystic Fibrosis Canada also created a series of posters on key CF topics that were unveiled at the conference, and can be viewed here.

For those interested in viewing the conference presentations, they are available here.

 

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