vision for the telethon institute - uwa · 2013. 5. 7. · vision for the telethon institute fmdhs...
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Vision for the Telethon Institute
FMDHS Research Day 04 December 2012
Professor Moira Clay
Director, Academic & Research Services
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Outline
• Context for WA research • Telethon Institute Strategic Planning • Translational research • Where to from here?
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WA % of National NHMRC Funding
Source: NHMRC
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Health and Medical Research Funding 2011
• 88% of all HMR funds in WA came from Commonwealth ($77.2M) – NHMRC, ARC etc
• 12% came from the state ($10.7M) – MHRIF, Dept of Health
Source: Science Matters report 2012
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WA Research – observations • National profile – Australians of Year / Nobel Prize • Strengths in basic science and observational studies • Child health, data linkage, cancer, eye health, immunology • Insufficient collaborations, too much internal competition • Aging researchers • Growing cynicism about usefulness of research focus • Enormous potential, but currently at risk
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Telethon Institute context • 22 years old. • Great reputation, high quality research, amazing founding
Director, outstanding community support • Many of the “old guard” retiring over next 5 years • Now is a great opportunity to take stock and develop a new
vision.
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Telethon Institute – Strategic Planning • Set direction for next five years • Facilitated / consultative process
– Staff Survey – One on one interviews – Focus groups – Faculty retreat with External Scientific Advisory Committee – Internal / external stakeholder workshop
• Aim is to have plan ready for Board sign off in February – Living document that is adaptive, flexible and measurable
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Principles
• Research is all about: – Partnerships – Answering important questions – Making sure that research makes a difference to
health and wellbeing – Communication and engagement – The people who do the work, and those with
whom we work
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Vision • Improving the health and wellbeing of children and young
people • “Big thinking” / Excellence • Board challenge - Tangible outcomes in the next five years
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How? • Excellent research that asks the right questions, uses the best
people, and gets put into action. • Cast a new concept for a medical research institute – one that
embraces its community and judges itself by its ability to make a difference in that community.
• Be an important part of making Western Australia a leading centre of translational research.
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Institute Priorities
Translation
Discovery
People Engagement
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Traditional model Knowledge transfer
Research Research findings
Policy and practice
Research Push
User Pull
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Limitations
• Hit and miss uptake – Especially research push
• Buy in from those responsible for implementing • Miss opportunities to identify and/or mitigate
against barriers to uptake
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Knowledge exchange
Research Research findings
Policy and practice
Research Push
User Pull
Exchange
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Research translation
Integrated approach
Research
Policy Practice
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Research translation model
• PARTNERSHIPS • Multi-directional flow of information which begins at
project inception • Together:
– Develop research questions, set a research agenda and determine actions
• Partners help with and guide the research
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Models of research translation at the Telethon Institute
• Neural tube defects • Childhood cancer • Centre for Applied Research and Evaluation • Developmental Pathways Project • Fraser Mustard Centre
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0
0.5
1
1.5
2
2.5
3
1980 1982 1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010
per
1000
bir
ths
year of birth/TOP
Neural tube defects, Western Australia 1980-2010
Total
A
B C
A –introduction of promotion of folic acid supplement use B – introduction of voluntary fortification of some food with folic acid C – introduction of mandatory fortification of flour with folic acid
Source: WA Register of Developmental Anomalies
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Childhood Cancer
• Partnership between Telethon Institute and Department of Haematology and Oncology at PMH – Every child is on a clinical trial – Access to samples – Clinically relevant research
• Community drivers for research – Funding for Brain Tumour Laboratory – Medulloblastoma Down Under Feb 2013
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CARE = Collaboration for Applied Research and Evaluation
• Research underwritten by a contract • Trust between partners and CARE built up over the
years • Partners are part of the research in
– Identifying the research interest – Formulating the research question – Undertaking the research – Assisting in interpreting the findings – Disseminating the findings – Acting as advocates for change within the system
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The Developmental Pathways Project
Telethon Institute for Child Health Research The University of WA WA Department of Health WA Department for Child Protection WA Department for Communities WA Department of Housing WA Mental Health Commission
WA Department of Education WA Department of Corrective Services WA Disability Services Commission WA Department of the Attorney General WA Police WA Department of Treasury and Finance WA Department of Indigenous Affairs WA Curriculum Council
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Aims • multidisciplinary research • integration between health and education services with a
focus on child development • build capacity amongst public sector staff and academic
researchers to collaborate on useful research and • attract funding for shared priorities
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Consumer and community participation
• Focussed on increasing consumer and community participation in the research programs at the Telethon Institute
• Working together to shape decisions about research priorities, practice and policies
• An active partnership sensitive to changing needs and priorities
• Conducting research that is with the community rather than to or for the community
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Translation = Partnerships
Research Translation
Service providers
Policy makers
Funders Consumers
& Community
Academia
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Where to from here? Opportunities: • Research more directly influencing policy, practice
and outcomes • WA as a leader, particularly in translationally-driven
research – Basic science as the underpinning of great translation
• New generation of research leaders
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• Multi-disciplinary partnerships – Especially for complex problems
• Strategy – Driver should be important health problems and outcomes – Build on strengths – Identify strategic advantages (e.g. Asian Century) – Recruit/retain workforce
• Investment
Where to from here?
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• Group research into a small number of multi-disciplinary themes
• Partner with non-traditional collaborators • Build external strategic links, internal collaboration and
community participation – “An institute without walls”
• Build on strategies to develop and nurture our workforce
Next steps for the Telethon Institute
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Now and the Future