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SUMMARY, CHALLENGES AND RECOMMENDATIONS


the factors may be modifiable.


• Additional epidemiological research is needed to investigate the observation that the incidence of IBD is increasing, especially in children, (for currently unknown reasons) fairly rapidly, that is, within generations rather than over generations.


• Prevalence estimate updates and new estimates for remaining provinces using the administrative database methodology would provide improved national estimates.


• National estimates will further be improved by establishing modified and tested pediatric prevalence estimation approaches.


• More studies are needed to measure the direct and indirect costs by severity of illness, to update the costs/practice patterns associated with biologicals, and to provide more current hospitalization rates (post-impact of biologicals). In addition, new methods to measure other direct costs (such as, non-health care professionals, labs) will help to improve economic impact estimates for IBD.


RECOMMENDATIONS


The CCFC has undertaken a public policy priority-setting exercise to identify its key initiatives. The options were derived from a number of sources including: the 2008 Burden of IBD Report; a strengths, weaknesses, opportunities and threats (SWOT) analysis undertaken in 2009 by the CCFC senior staff and Board of Directors; discussions in CCFC-related social media channels and direct requests for support from CCFC members and people with IBD. A framework was developed to filter and assess these public policy priorities. Given the results of this assessment and the organization’s mandate and resources, in 2011, the Board of Directors of the CCFC committed to advancing three specific public policy priorities: increase government funding for IBD research and awareness; ensure timely and equitable access for IBD medications and treatments; and improve public bathroom access for those living with IBD. The CCFC has taken a leadership role in advancing these priorities, and is committed to working with key stakeholders to address the recommendations highlighted in this report.


THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 85


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