Established in 2012, CANFib provides research and Data to Physicians, Pharmaceutical Firms and Government that will help advance the of treatments of Uterine Fibroids.
While CANFib Moderates 1000s and 1000s of Patient Discussions on Fibroids, the goal of this work is to accumulate and extract relevant data that can be relied upon for decision makers. This helps to ensure those decisions take as much information into account as possible, while presenting that information in a condensed and well vetted format. CANFib also works to advance the understanding of all those involved toward each others role in the conditions of Fibroids and Endometriosis.
While CANFib has several large and popular “private” patient groups, the main Public Channels consist of more than 24,000 voices. The focus of CANFib is to develop a clear and direct conduit to accurate data (be that from the Public Channel Group or the Private Member Groups. Members are enthusiastic about the concept of contributing information to provide a collective set of data that provisional groups such as Pharmaceutical Companies, Insurers, Government and Physicians can draw upon. (and clear communication of those needs) equaling results. Because of this openly communicated purpose, members freely participate in discussion about symptoms as well as the top frustrations with regard to treatments and timelines. Patient collective information is shared to formulate concise directions and desires about now and the future of Uterine Fibroids diagnosis and treatment in Canada.
At the same time, the Private Groups at CANFib are split up into Surgical Treatments, Drug Treatments and other categories allowing women to relate to each other at the stage they are currently experiencing and at the same time, allowing CANFib to accumulate more specific data from these sectioned off groups.
Social Media Discussion and Moderation
One of our main discussion boards is shown on the home page. Just click like and you are in on come of the public talk. Keep in mind that your comments are appreciated and important information, strategies, surveys are all curated through these comments. This makes Patient Participation in CANFib much more than that of a patient group. Your information goes much farther, albeit completely confidential.
Proven and Approved
Fibroids information on the internet is fraught with a myriad of miracle cures, promises and places that purport to know how to eliminate Fibroids naturally. Many of these sites take great strides to appear as news or medically supported. Currently the only cure for Fibroids is a hysterectomy. To that end the treatments for both Fibroids and Endometriosis go through rigorous procedures to gain approval in Canada. Some are for heavy bleeding and some for fibroids themselves, but without fail, all listed treatments in CANFib are Health Canada Approved.
About the Data Produced by CANFib
CANFib is a group of 24,000+ women in varying stages of Uterine Fibroids (or working with someone in a stage of Uterine Fibroids).
At the same time CANFib offers surveys to Research (CADTH) and Pharmaceutical Companies by way of requesting the views of members and formatting the results into reports that help further research, medicine and understanding of Uterine Fibroids.
And in addition, CANFib offers studies and impact statements to Health Canada, Specialists and Surgeons, during drug reviews or by other invitation.
The improvement to quality of life, in Canada, stems from a combination of treatments as well as reasonable access to diagnosis and ongoing care.
Members of CANFIb agree their views are important to the process, and, for this reason understand views collected are shared with one or more of the groups within the set in which CANFib works to improve Women's quality of life when carrying Uterine Fibroids.
CANFib Code of Ethics
- Treat all members with respect, dignity, and fairness
- Contribute to Patient well-being
- Avoid harm
- Be honest and trustworthy
- Be fair and take action not to discriminate
- Honor confidentiality
- Perform work only in areas of competence
- Acknowledging all people are stakeholders in public health
- Acknowledge diverse social and cultural needs
Managing conflicts of interests
+ Website Hosting provided by COOLCOM | DOMAIN.CA
+ Funding for Production of Materials funded by Patricia Lee (ongoing)
+ Funding for Extended Materials and Outreach Actavis (2016) Allergan (2017-19) Bayer (2019) CADTH Research (2019)
While often funding comes from Research or Pharmaceutical firms, CANFib Data is collected through members that understand and agree the information is best distributed rather than kept proprietary. For the most part the development of materials and funding for travel is provided by Patricia Lee. Every year CANFib is fortunate enough to be considered by one or more firms for funding and by providing data that will help each body individually; a true win - win as CANFib can then offer expanded production with more results for Members.