EuroBioForum 2013 2nd Annual Conference 27-28 May 2013 - Hilton Munich City, Munich, Germany http://www.eurobioforum.eu/2013 ======================================= # NATIONAL PERSPECTIVES # Canada: Genomics and personalised health in Canada Dr Pierre Meulien, President and CEO at Genome Canada ======================================= http://www.eurobioforum.eu

1. EuroBioForum 2nd Annual Conference
A Collaborative Approach to Personalised Medicine
Pierre Meulien, President and CEO
Genome Canada
May 27th -28th 2013
Munich

2. Canadian Environment
●Publically funded health care system
●Provincially delivered (Regional Health Authorities)
●Costs the country around $160 Billion per year
●Growth in cost is around 4-7% annually (NOT sustainable)
●Biomedical research very strong in Canada
●Canada spends about 2% of government funded global research but
produces 3% of the highest impact factor publications
●Strong clinical networks across the country and - for some diseases - has
among the best outcomes in the world
●However our ability to move the latest technology into healthcare delivery
is low and the way technology is assessed across the country is very
heterogeneous
●New technologies are often seen as just an added cost and economic
analyses performed are not convincing enough for the payers

3. The Heart of Canada’s Genomics Enterprise
The Metabolomics
Innovation Centre
U. Vic./Genome BC
Proteomics Centre
Vancouver
Toronto
Montreal
Victoria
Genomics Innovation
Centre at the BCCA GSC
Edmonton
The Centre for
Applied Genomics
B.C.
Alberta
Prairie
Genome
Canada
Ontario
Atlantic
McGill University &
Genome Quebec
Innovation Centre
• 6 Regional Genome Centres
• 5 Science and Technology
Innovation Centres
• 160+ Genomics Projects
• $2 Billion Investment
• 7 Key Economic Sectors:
Agriculture, Energy, Environment,
Fisheries, Forestry, Health and
Mining
Québec

4. Sequencing Genomes is truly disruptive
• Technology that has – over the past 10 years-
decreased in cost by 1 million fold
• Is perturbing the status quo as reflected by many,
many questions being asked
What can your genome tell you about your health
status?
What can it tell you about your health future?
Who owns your genome data?
Who has access to it?
How will it be used?
• Will require massive change to an already stressed
system if we want genomics to be part of personal
health records

5. Personalized Medicine
Spectrum of Genetic Contribution to Disease
Very rare single gene
disorders
More common single
gene disorders
• Cystic Fibrosis
• Hemophilia
• Huntington’s Disease
• Muscular Dystrophy
Disorders with prominent
genetic contribution
• Childhood cancer
• BRCA 1/2 Breast cancer
• Some forms of autism
spectrum disorders
• Adverse drug reactions
Genetic susceptibility to
certain common diseases
• Colon cancer
• Certain cardiovascular
diseases
• Certain forms of Alzheimer
Most common
chronic diseases
with many genetic
factors but also
major
environmental
factors contributing
to disease onset

6. So how do we translate when we need to
consider a lot of complex issues?
• How good is the technology? (clinical validation)
• In a fast moving field, when do we decide that “now is
the time for transfer”
• Is it easy to adapt existing clinical laboratory
structures?
• Who will be making these decisions? (and based on
what criteria?)
• Technology assessment based on sound economics
and clinical benefit?
• Who will pay?
• How can behavioural change be accelerated

7. What we need now
• Demonstrations that the technology can
deliver real value to patients
• Demonstrations that integrating the
technology within the healthcare system will
be cost effective

8. How many human single gene
disorders remain to be discovered?
Single-gene disorders
gene known
~2900
gene unknown
~3600
suspected single gene
disorders
~4500
300
Disorders
Proposed

9. 1 Story… Undiagnosed Neurodegeneration
http://www.ottawacitizen.com/technology
December 4, 2011

10. 2012 Large-Scale Applied Research
Project Competition
Genomics and Personalized Health
• Program partnered with the Canadian Institutes of Health
Research
• $71 Million of federal money more than doubled through
partnerships for a total of $150
• Required teams to provide an economic analysis and rationale
for why their particular application will demonstrate value to
the health system
• Required relevant Economic, Environmental, Ethical, Legal and
Social (GE3LS) research
• Teams were requested to provide detailed development plan
for integration into the HC system
• Teams had to have buy-in from the payer and clinicians and
must have considered the regulatory frameworks existing in
Canada
• 17 projects funded – announced – March 26th.

11. Some examples of approved projects
Increasing effectiveness of drugs, lowering adverse drug
reactions and/or defining intervention strategies by
stratifying patients according to molecular profiles
 Epilepsy
 Autism
 Lymphoma, Breast Cancer, Glioblastoma, and
other cancers
 Rare diseases
 Stroke
 HIV
 Inflammatory Bowel Disease
 Cardiovascular

12. Integration of Genomics into
the Healthcare System
• Develop receptor capacity for technology pull (capacity for
clinical and translational research)
• Involvement of the private sector
• Educate and train healthcare professionals to be proficient
users of the technology
• Ensure information systems are modern and harmonize
e-patient records
• Role of patients and advocacy groups in demanding evidence
based medicine
• Robust technology assessments focused on improvement on
clinical outcomes and economic benefit analyses
• More balance between prevention and treatment
• Legislation to “encourage” behaviour change in the younger
population

13. •Partnership
•Case studies including economic rationale
• Canadian model of health delivery (publically
funded- provincial- central regulation)
WHAT CAN WE OFFER?

14. Learning what other jurisductions are doing
• E-health records and how genomics data can be
integrated
• How data from large cohort studies can be
interrogated (new international platform being
considered?)
WHAT ARE WE LOOKING
FOR?

15. 1. We need many demonstrations (to payers) that
PM offers sustainable value (this will be the only
way to generate “pull” in the system)
2. We need to “solve” health the informatics
conundrum
3. We need to move genomics to the clinical space
in a more “urgent” manner
TOP 3 recommendations
for achieving tangible results

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