janice besch, director, nhmrc development of a targeted national dementia research and translation...

NHMRC National Institute for Dementia Research

Janice Besch

Director

Australian of the Year 2013 - Ita Buttrose

NHMRC Funding Commitments 2012 $35.1M Dementia

$192.3M Cancer

$121.8M Cardiovascular

$74.9M Diabetes

$70.4M Mental Health

2013 Election Policy – Taking the Initiative

• Dementia recognised as the third leading cause of death

• No cure & rapidly increasing prevalence

• $200M over 5 years

• Support work on treatment and cure

• Give hope to those living with, or caring for people with dementia

Research Initiative Objectives • Dramatically increase research capacity by supporting our best

new researchers to commence work on the key challenges

• Prioritise additional funding for dementia research projects in the health and aged care sector

• Ensure we make the most of what we already know by translating our research into better care for patients

• Invest in vital dementia research infrastructure to allow our scientists to develop the solutions we need

A New Approach • Top Down versus Bottom Up

• Desire for greater political and community engagement and involvement

• Presaging the MRFF

• Building on earlier ‘top down’ strategy-driven schemes: NHMRC Partnership Centres eg Cognitive Decline, Genomics

The New National Institute • Established by NHMRC with Alzheimer’s Australia in July 2015

• Unique and new model to better focus research and link to consumers

• Secretariat employed by AA - funding programs managed by NHMRC

• NNIDR Director role to advise NHMRC CEO

• Director informed by Expert Advisory Panel and Advisory Board

NNIDR Advisory Board • Prof Graeme Samuel (Chair), President Alzheimer’s Australia

• Ms Samantha Bailieu, Yulgilbar Foundation

• Mr Martin Cross, Medicines Australia

• Dr Penny Flett, Brightwater Group

• Mr Richard Grellman, KPMG

• Dr Jane Thompson, Consumer / Carer

• Prof Bob Williamson, Melbourne University

• Ms Janice Besch (Chair) • Prof Peter Schofield, NeuRA • Prof Kaarin Anstey (DCRC), ANU • Ms Catherine Rule, DoH • Prof Elizabeth Beattie (DCRC), QUT • Prof Henry Brodaty (DCRC), UNSW • Prof Annette Dobson, UQ • Mr John Doull, Consumer • A/Prof Eleanor Flynn, UMelb • Prof Jürgen Götz, UQ

• Ms Louise Heuzenroeder, Consumer • Prof Ralph Martins, ECU • Prof Colin Masters, UMelb • Professor Dimity Pond, UNewcastle • Dr Tammy Kimpton, Primary Care • Prof Susan Kurrle (CDPC), USyd • Mr Mike Rungie, ACH Group • Professor Perminder Sachdev, UNSW • Prof Graeme Samuel (Board), AA • Prof Bob Williamson (Board), UMelb

NNIDR Expert Advisory Panel

Prevention Assessment Diagnosis

Intervention Treatment

Living with Dementia

Care

There is increased understanding of the Australian population’s risk factors and how they change over a lifespan

Diagnosis is coordinated and supported

New understanding informs approaches to treatment

There is increased awareness and understanding of the rights, needs and experience of people with dementia living in the community

High quality clinical care that improves quality of life is provided for people with dementia and their carers in all environments

There are effective interventions to reduce the risk of dementia and lower the incidence of dementia

The accuracy and timeliness of assessment and diagnosis are continuously improving

There are effective interventions to sustain independence and improve quality of life and quality of care

The dignity, independence and self determination of people with dementia are supported

A multidisciplinary approach to individualised care improves quality of care and quality of life

There are effective new, innovative treatments to delay or prevent dementia progression

Consumer choice drives improvement in quality of care

Capacity Building and Training

Infrastructure Enabling Collaboration and Co-ordination

International Linkages

NNIDR National Institute for Dementia Research

Principles • Aligned priorities

• Powerful partnerships

• Coordinated programs with continuity

• Translation as an intrinsic part of program design

• New research

• A legacy of change

Investigators, governments, service providers and consumers are aligned through a shared narrative of change for consumer outcomes

Cross-sector, cross-domain and cross-disciplinary partnerships, thought leadership and the inclusion of different sectors of research inform the design of vital new research programs and new approaches to research. Research supports innovation and targets the areas where there is pressure to innovate

Research programs come together to form a cohesive effort, continuous learning and increasing levels of engagement

They are designed to achieve short and long term translation targets. Barriers are addressed in program design. Design also seeks short term care and practice innovation during longer term discovery and evidence creation

Vital new programs of research are established

Longevity is achieved beyond the life of the Institute’s initial investment

Outcomes • Researchers, governments, consumers and service providers are

aligned in their efforts to deliver genuine outcomes

• Boundaries between silos of research are blurred

• There is an increase in the pace and reach of innovation

• Australian research contributes significantly to the international effort

• There is measurable evidence of short term improvements in the experience of living with dementia, diagnosis, intervention and care for people with dementia and their families and carers

Investments • Made across all priority areas

• Advice from Expert Advisory Panel and Board, broader sector input

• Delivery through NHMRC funding schemes, procurement processes, targeted calls

• Involving consumers in the decision process

Capacity Building and Training • Matching funds to support Clem Jones Centre for Ageing

Dementia Research at UQ, $9M

• 6 Dementia Research Team Grants, $35M (bringing new researchers working collaboratively into the field)

• 76 ARC-NHMRC Dementia Research Development Fellowships, $46M (across all 5 priority areas)

• Dementia Research Leadership Fellowships (NHMRC CDF2 level awards across all 5 priority areas for award in 2017)

Intervention, Treatment and Care • Boosting Dementia Research Priority Round 2 Grants, up to $18M

(Grants will support applications that focus on implementing dementia research into clinical practice – Living with Dementia – and Care)

• Working closely with the Dementia Collaborative Research Centres to achieve translation to healthcare outcomes

Establishing Enabling Research Platforms • Addressing the need for improved dementia statistics to enable effective

planning, in collaboration with AIHW and ABS

• Building a national Dementia Registry, linked to international datasets, to chart, over time:

• The natural history, disease trajectory and outcomes of dementia and cognitive impairment

• The needs of particular population groups

• Addressing a major barrier to clinical research in dementia by identifying a national cohort of highly characterised individuals who are ‘clinical trial ready’

International Collaboration • Participation in the 2015 EU Joint Programme for Neurodegeneration

Research (JPND), $2.7M

• Participation in the 2017 EU Joint Programme for Neurodegeneration Research (JPND), up to $5M

• Leading the establishment of the WHO Dementia Observatory and International Research Network for Dementia Prevention (Prof Kaarin Anstey, DCRC)

• Dementia research - a key election promise

• $200M funding boost

• “Top Down” agenda

• What are the community outcomes?

• Dementia-related illness and care is a growing social issue

• Strong community support for more research & improved care

• We perform well in the science

• Researchers and sector on the same page

Government/political Community/science

Current Status of NNIDR

NHMRC National Institute for Dementia Research

A new and unique opportunity

for lifting public and political engagement to enhance dementia research