Data + Delivery = Best Practice Health Outcomes
Cystic Fibrosis Canada’s mission is to help people with cystic fibrosis (CF). Cystic Fibrosis Canada funds research and supports high quality CF care
About You
About You
First Name
Katherine
Last Name
Blake
Twitter URL
http://twitter.com/#!/CFCanada
Facebook URL
About Your Organization
Organization Name
Cystic Fibrosis Canada
Organization Website
Organization Country
Canada
Country where this project is creating social impact
Canada
Is your organization a
Non‐profit/NGO/citizen sector organization
How long has your organization been operating?
More than 5 years
Has the organization received awards or honors? Please tell us about them
References - Please provide two references with a two-sentence biography, email address, and phone number for each
Charles Ivey, Director on the Charles H. Ivey Foundation- businessman and volunteer
charles_ivey@firstclass.com
(416)520-0957
Debra Berlet
parent of two children with CF, President of the Board- Cystic Fibrosis Canada
debraberlet@mac.com
403-318-2063
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Innovation
Select the stage that best applies to your solution
Scaling (the next step will be growing impact on a regional or even global scale)
How long have you been in operation?
Operating for more than 5 years
The Need: What problem are you trying to solve?
Cystic Fibrosis is a genetic disease that effects a small population. Even though it is life threatening, it typically does not warrant a lot of support or interest from the medical community. Because of the serious repercussions of having the disease and the issues that individuals with cystic fibrosis must deal with it is difficlut to guarantee high quality and affordable health care.
The Solution: What is your solution? Be specific!
To combine technology with principal care to improve health outcomes.
-in the early 1970's Cystic Fibrosis Canada created the Canadian Patient Data Registry (CPDR). The registry was designed not only for the research interests of cystic fibrosis but to track the needs and trends of individuals with cystic fibrosis. The registry for over 25 years has tracked individuals from birth/ diagnosis to death and only 7 individuals have abstained from allowing information to be entered.
- registry is linked to a network of Cystic Fibrosis health clinics across the country.
- information is standaradized and clinics monitor the health outcomes for their patients
- CFC set up a a peer review accreditation program for the clinics.
-clinics maximize quality of care and have this reflected in the information provided through the registry. We have also provided an incentive for the clinics to enter data in the registry by providing clinic grants for educational purposes of staff.
The Model: Walk us through a specific example of how your solution makes a difference; include your primary activities
The CPDR is used by clinicians in 42 clinics across the country to improve their knowledge of disease patterns and care for individuals with cystic fibrosis.
Data collected includes pulmonary and nutritional outcomes of the individuals which can be factored for quality improvements at a clinic based on the national median value.
Quality initaitives are developed and tracked to show improvement over time.
An example is CF- related diabetes. The clinics are tracking the prevelance and age of diagnosis for CF-related diabetes. In 2009 , 13.1% of individuals reported CF-related diabetes and in individuals 35 years of age and older, the prevelance of CFRD is 25.9%.
This tracking has resulted in initiatives like the one through the University of Montreal which is studying best practices in Quebec clinics for managing CF-related diabetes. Along with studying health outcomes they are providing workshops and peer learning about the complication in CF patients. This in turn will affect the peer review accreditation process for clinics and create standards for quality of care in managing the complications of CF- related diabetes..
The Marketplace: Who are your peers and competitors? Identify others also working to address the needs you are and what differentiates you from them. What challenges could these players pose to your success or growth?
Cystic Fibrosis Canada's peers are Canadian researchers and clinicians,and Candian institutions - Universities and Hospitals. We also share a space with other genetic disease organizations which might also be viewed as competitiors depending on the stakeholder.
There is really no other agency in Canada that is addressing the needs of individuals with cystic fibrosis. Independently hospitals and universities have research programs regarding cystic fibrosis but until now have partnered with us as a lead advocate and funder on their intitiatives. If this were to change and they began operating independently then that might effect success and growth.
This Entry is about (Issues)
Social Impact
Founding Story: We want to hear about your "Aha!" moment. Share the story of where and when the founder(s) saw this solution's potential to change the world.
Cystic Fibrosis Canada's founders were parents of children with cystic fibrosis. They wanted to see their children live and saw in the development of the Canadian Patient Data Registry and the support of clinics an opportunity to effect change on behalf of their children. The founders did a significant fundraising campaign to support and build the database. They also forced the networking and collaboration of clinics. They demanded on behalf of their children the best health care and the best information so they could realize their mission.
Please describe the goal of your initiative; outline what you are trying to achieve
Ultimately Cystic Fibrosis Canada is working towards a goal of cystic fibrosis not being a life threatening and life shortening disease. Part of the process along with exciting breakthrough scientific discoveries is to have a systematic and reliable approach to managing the disease. Through the database trends and new learnings can be montiored which will effect the health outcomes of patients. Clinics sharing best practices and ensuring staff have access to the newest and most reliable education means that there can be impact at the bedside. The results are a better quality of life and a longer life for individuals living with cystic fibrosis.
What has been the impact of your solution to date?
Probably the greatest impact is that Canadians with cystic fibrosis have a median age of survival of 46.7 years. Internationally the median life expectancy is 37 years of age. The difference is quite remarkable and ultimately points to quality of care and montioring advances in care. The integration of montioring trends and pairing this with best practices in care has had a real impact for individuals with cystic fibrosis.
What is your projected impact over the next five years?
One would expect that we would mainatin and grow the median age of survival for individuals with cystic fibrosis. It is also expected that the quality of life and the management of the disease would improve.
Winning entries present a strong plan for how they will achieve and track growth. Identify your six-month milestone for growing your impact
Secure Support for updating the Technology
Identify three major tasks you will have to complete to reach your six-month milestone
Task 1
Create a case for Support for the CPDR.
Task 2
Develop a list of funders potentially interested in the project.
Task 3
Secure funds for the project.
Now think bigger! Identify your 12-month impact milestone
Update CPDR through clinic collaboration
Identify three major tasks you will have to complete to reach your 12-month milestone
Task 1
Collaborate with clinics and clinicians on needs of CPDR
Task 2
Work with database experts on a draft for new technology
Task 3
Share changes and gain consensus for the project
Sustainability
Tell us about your partnerships
We have significant partnerships with the clinics, their hospitals and the academic institutions that support the gathering of information through the CPDR. The partnerships are collaborative and much of the work is done through consensus and a peer review process. Partnerships have effected the best practices of clinics and ultimately the well-being of individuals with cystic fibrosis. We also partner with families and indiviuals to raise funds and further learn about their needs.
Are you currently targeting other specific populations, locations, or markets for your innovation? If so, where and why?
In the last 10 years we have specificaly targeted rural communities with an outreach strategy for clinics to ensure everyone is served who needs care. Our scope has been limited to Canada, although information has been shared at international conferences.
What type of operating environment and internal organizational factors make your innovation successful?
There is an organizational simplicity to the design of the database, the collection of data through the clinics, the collaboration of patients and clinicians, and the support and peer review process of clinics that makes this program work. often organization's overlook the simple answers on how to do things. Overall the program is strengthened by the conviction of the experts and the patients - that if something is working don't fix it.
Please elaborate on any needs or offers you have mentioned above and/or suggest categories of support that aren't specified within the list
 | 29 weeks agoKatherine Blake updated this Competition Entry. |
| 29 weeks agoKatherine Blake updated this Competition Entry. |
| 29 weeks agoKatherine Blake updated this Competition Entry. |
| 30 weeks agoKatherine Blake updated this Competition Entry. |
| 30 weeks agoKatherine Blake submitted this idea. |
