Cystic Fibrosis Canada 2024-27 Strategic Plan

What We Did To Inform This Strategy

Led by the Board of Directors and Cystic Fibrosis Canada (CF Canada) staff, we developed this strategy over the past year. We were informed by the experience of other cystic fibrosis (CF) organizations and charities, by researchers and clinicians, by volunteers, and by people living with cystic fibrosis and their families. Staff attendance at the North American CF Conference provided a good opportunity for us to speak to many key informants and learn about current and future issues. In addition, we conducted interviews with 12 clinicians working in Canadian CF clinics, held discussions with our Health Advisory Council and Adult CF Committee members, and conducted a survey with over 600 people affected by CF.  

Previous work on our research strategy and our volunteer strategy also provided us with needed context and information. CF Canada staff throughout the organization participated in workshops to identify opportunities and challenges and three Board meetings were dedicated to discussions on needed direction. Our global colleagues were consulted and our learning over the past four years on delivery of our previous strategy greatly informed this plan.

Our Strategy

The essence of this strategy is one of learning, adapting and investing for the future. We need a strategy that is clearly focused on the needs that are known, but also one that is nimble, and positions the organization for a future that will look significantly different than its past.

Our approach is intentional in focus. We have built this plan so that we leverage our unique qualities and strengths. While our desired impact is bold, we will prioritize areas of greatest need, focusing on closing gaps, all in the interest of improving the health and well-being of all people diagnosed with CF in Canada.

CF Canada is at the centre of the CF ecosystem and we heard clearly that our stakeholders value CF Canada’s leadership in mobilizing our community to address issues they see and experience. Having the trust of and direct access to this community and having health data (through our Registry) on almost every person diagnosed with CF in Canada, provides us with a unique ability to be deeply anchored in real-world evidence and experience. Further, with an over 60-year track record of success, we have the drive and ability to ensure progress is pursued. Each of these elements will be critical to delivering on our plan.

Other key strengths to leverage:

• Our advocacy abilities, which will be be important as federal and provincial/territorial governments are currently focused on rare disease drugs and disability supports
• Our clinical trials network
• Legacy work in clinical care and advancing research
• Our committed community
• Our global networks and connections - for instance, we will be able to benefit from the learning of other countries in their thinking on what changes are needed in clinical care, in what data should be collected in Registries and in what new supports or programs are needed for the CF community

What’s Required To Deliver On This Impact?

We have named four Strategic Imperatives that elevate the things we believe we must do to achieve the impact we seek in the next three years. These Imperatives guide the major initiatives we will choose to focus on, and will inform our decision making and ways of working across the organization.  

1. Harnessing Data

By investing in this imperative, we will ensure we have the right data systems to support our operations and people are equipped and have the right data to make needed decisions. This will allow our teams to make better decisions in fundraising, to better connect with our stakeholders and in people and to have better information for financial management. Importantly, our improved efficiency will allow us to reinvest more to our mission of helping Canadians with CF live healthier lives. A focus on this imperative will also result in CF Canada having a cohesive data framework, one that includes adaptations to our Registry, and is complemented by other Canadian data systems, so that we can best understand the changing health and social needs of our community. 

2. Cultivating Connections

Our investment in this imperative will see us engaging with our community with more relevance  and intentionality. We will test out new models of connection and stakeholder engagement to determine which are optimal for driving impact. Through our learning, our evolved community engagement model will help us recruit new members, including people living with CF and a variety of demographics, while also retaining existing community members by providing them with a value-add experience that is truly meaningful to them.

3. Enabling a Thriving Culture

By delivering on this imperative, we will have our people set up with the right roles and responsibilities, and aligned to the priority work that needs to be executed. We will continue to nurture a culture that supports diversity, equity and inclusion, and human resource supports and structures will be in place to enable effective recruitment, engagement and retention.

4. Simplifying And Modernizing

By delivering on this imperative, we will have a strategic approach to our enabling tools and a simplified technology structure in place to execute on our work. Our processes will be optimized to deliver on our work in an efficient manner and we will have an effective way to share and collaborate across the organization and with our stakeholders. This will build an environment where staff will spend more time focusing on the most important work as well as an organization that can better leverage technology to connect with our community.