EuroBioForum 2nd Annual Conference A Collaborative Approach to Personalised Medicine

Pierre Meulien, President and CEO

Genome Canada

May 27th -28th 2013

Munich

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

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

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

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

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

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

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

1 Story… Undiagnosed Neurodegeneration

http://www.ottawacitizen.com/technology December 4, 2011

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.

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

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

•Partnership

•Case studies including economic rationale

• Canadian model of health delivery (publically funded- provincial- central regulation)

WHAT CAN WE OFFER?

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?

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

150 rue Metcalfe Street, Suite 2100

Ottawa, Ontario

CANADA K2P 1P1

Tel. : 613-751-4460

info@genomecanada.ca

www.genomecanada.ca