national institute for health research dementia research workshop 14 january 2011
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National Institute for Health ResearchDementia Research Workshop
14 January 2011
The Ministerial Advisory Group on Dementia Research
Chair: Professor Alistair Burns National Clinical Director Dementia
Department of Health
NIHR Dementia Research Workshop
14 January 2011
NIHR Dementia Research Workshop
14 January 2011
Priority Topics for Dementia Research
Professor Chris Kennard Chair, MRC Neurosciences and Mental Health Board
& University of Oxford
NIHR Dementia Research Workshop
14 January 2011
Membership and process
Membership• Research Councils• Govt Depts• Research Charities• National clinical networks• Expert chairs of Cause, Care, Cure sessions from 2009 Ministerial
Dementia Summit
Discussions of the Subgroup were informed by:• the 2008 MRC Strategic Review of Neurodegeneration Research• the 2009 National Dementia Strategy• updates from Subgroup members on current research activities• outputs from the Ministerial Dementia Summit held in July 2009
NIHR Dementia Research Workshop
14 January 2011
Priorities identified (1)
Understanding disease mechanisms and progression• to promote the development of new therapeutic strategies
• genetic and molecular pathways & interaction with the environment
• interaction of pathologies across the dementias
• predictive animal and cellular models - biomarkers of disease development and progression will be critical to this
• long-term promise of stem cell research for therapy, though in the near-term its impact will be in disease-modelling
• what is the most beneficial time-window for treatment efficacy?
• increased donation of brain tissue is needed, tied to detailed clinical data
NIHR Dementia Research Workshop
14 January 2011
Priorities identified (2)
Longitudinal population studies• to increase our understanding of the ageing process, and to identify
the risk and protective factors relating to dementia.
• near-term opportunity to better utilise existing population studies
Recruitment of research participants• creation of a national register of patients?
• routinely provide the patient with the opportunity to be asked to participate in research at the point of diagnosis?
• to increase clinical studies of people with mild cognitive impairment, need to address challenges of undertaking multi-centre studies, and the regulatory issues relating to the use of surrogate markers
• stratification of study participants, to separate out the various dementia sub-types, to better target and evaluate intervention studies.
NIHR Dementia Research Workshop
14 January 2011
Priorities identified (3)Prevention strategies• key preventative factors include a healthy diet, promoting physical
and cognitive activity and controlling cardiovascular risk factors -promotion through public health interventions focused on 'healthy body, healthy mind'?
Behavioural and psychological symptoms and interventions• increase focus on research into behavioural and psychological
symptoms, particularly with regard to managing challenging behaviour and improving quality of life.
• need better evaluation of non-drug interventions for behavioural disturbance, including improved training in care homes.
• translating efficacious psychological and non-drug interventions to real-world settings
• evaluation of the impact of care received by people with dementia in general hospitals.
NIHR Dementia Research Workshop
14 January 2011
Priorities identified (4)
Promoting research in care homes• to address comorbidity, especially in relation to vascular disease,
and to improve the physical health of patients with dementia
• research into falls prevention
• assessments of the effectiveness of interventions undertaken by carers - improved outcome measures are needed.
• the development of research networks in this sector would assist access to research populations and encourage care homes to share expertise and information
• relatively little research on end of life and palliative care for people with dementia - current hospice care models need to be developed for transfer to social care settings.
Increasing Public Support and Participation
Rebecca Wood Chief Executive, Alzheimer’s Research Trust
Professor Clive BallardHead of Research, Alzheimer’s Society
NIHR Dementia Research Workshop
14 January 2011
NIHR Dementia Research Workshop
14 January 2011
Workgroup 2
Identifying ways of raising public awareness of, and support for, dementia
research and increasing public engagement in dementia research via recruitment to trials and other studies
or via tissue donation
Workgroup members: Dr Craig Ritchie, Joe Korner (Stroke Association), Steve Ford (Parkinson’s UK), Professor James Goodwin
(Age UK)
NIHR Dementia Research Workshop
14 January 2011
Key topics• Communication
• Prevention of dementia
• Engagement of more people in research– Case registers (Work Group 4)– Brain Banking
NIHR Dementia Research Workshop
14 January 2011
Communication• Targeted communications
– Develop specific communications to improve awareness of importance of dementia research– Ensure communications are relevant to all audiences e.g. focus on prevention to engage a
younger audience
• Develop key messages– Messages based on robust evidence– Work closely with journalists and communications experts to refine and improve key
messages and optimise their use
• Communication channels– Utilise diverse channels and communication methods to reach more audiences e.g new
media including social media, audio-visual channels, interactive engagement – Tailor communication channel to target audiences
• Seek partnerships– Develop partnerships with likeminded organisations to strengthen communications– Capitalise on significant overlap between messaging for cardiovascular health and
prevention of dementia
NIHR Dementia Research Workshop
14 January 2011
Prevention
• Develop evidence-based, engaging public health messages
– Exercise, weight, diet
– Proper management of medical risks
• Recognition of role of primary care and secondary services
– Management of blood pressure, cholesterol and additional conditions (depression, diabetes) for primary, secondary and tertiary prevention
– Healthy lifestyle messages
• Explore opportunities for implementation of research into prevention of dementia
NIHR Dementia Research Workshop
14 January 2011
Brain Banking• Clear communication of scientific importance
• Develop strategies to increase number of donors
• Develop as platform for building capacity amongst neuropathologists
• Standardise brain banking processes to enable widespread use of material – Provide a valuable resource to enable researchers to address
the most important research questions
Improving Access for Funding and Support
Dr David Cox Deputy Director, NIHR Research Faculty
Department of Health
NIHR Dementia Research Workshop
14 January 2011
NIHR Dementia Research Workshop
14 January 2011
Improving access to funding
The task
• Identify factors inhibiting access to existing resources
• Consider how partners might address these issues
• Identify potential quick wins
• Work up plans for short term deliverables
• Develop specific proposals for less tractable issues
NIHR Dementia Research Workshop
14 January 2011
Improving access to funding
Issues considered
• Funding opportunities
• Research capacity and capability
• Organisation and culture
• Infrastructure
NIHR Dementia Research Workshop
14 January 2011
Improving access to funding
Funding opportunities
Issue: perception that dementia research funding bids less successful • Access to funding: highlight opportunities for different types of
research short term• Access to information/advice on developing more competitive
applications quick win• Advance warning of strategic requirements of calls quick win• Dementia research web portal short term deliverable• Publicise opportunities e.g. this workshop quick win• Communicate importance of dementia for FP7 funding short term
and adequate funding in FP8 longer term
NIHR Dementia Research Workshop
14 January 2011
Improving access to fundingResearch capacity and capability
Issues: specific capacity limitations and shortages of key staff• Increase exposure to dementia research issues e.g. attract clinical
trainees into research at an early career stage (ACF) quick win
• Involve nursing academics in planned dementia workshops short term
• Identify needs for capacity building in key disciplines and settings longer term
NIHR Dementia Research Workshop
14 January 2011
Improving access to funding
Organisation and cultureIssues: industry links, data sharing, pooling of funds, leadership
• Round table academic/industry/charity discussion on data sharing quick win
• Role for NOCRI (National Office for Clinical Research Infrastructure)
• Suggest to industry targets for new drugs and devices quick win
• Disseminate existing protocols for data sharing quick win
• Map data resources short term
• Charities to discuss partnership on case by case basis longer term
• Leadership – being taken forward by ‘Better ways of working’ group
NIHR Dementia Research Workshop
14 January 2011
Improving access to fundingInfrastructure
Issue: stronger industry links with experimental medicine facilities
• Convene industry brainstorming session also involving charities quick win
Conclusion• We continue to work together to identify ways in which the community
can gain easier access to funding and support.
• The working sub-group has identified a number of quick wins and short term deliverables.
• These actions form part of a wider programme of MAGDR- sponsored activity
NIHR Dementia Research Workshop
10/04/23
Developing Better Ways of Working
Professor Martin Rossor Director, NIHR Dementia and Neurodegenerative
Diseases Research Network
14 January 2011
NIHR Dementia Research Workshop Priority Setting2 ministerial meetings, 4 subgroup meetings with wide representation and broader consultation
Key priority areas identified:• Integration of patient care and research
– Consistent, coordinated local research support networks embedded in core care services
– Prospectively identifying patients interested in research and signposting from core care services
• Research in care homes
• Increasing leadership
NIHR Dementia Research Workshop
Project ManagementKey priorities being developed via project management boards with key stakeholders involved
RAFT(Recruitment and Feasibility Tools)
INTERACT(Integrating Networks and Embedding Research in Clinical Practice)
ENRICH(Enhancing Research In Care Homes)
LEADERSHIP
Project Key deliverables
•Map existing and emerging leadership
• Identified leaders onto NIHR Leadership programme
•Tool kit for researchers and care homes
•Network of research enabled care homes
•Toolkit for development of local registers
•Capability to federate local registers
•Coherent, consistent set of local research networks across country
•Capacity & capability in core services to consent patients to registers
Improving the Impact of Research on Treatment and Care
Barbara Woodward-Carlton Quality Research in Dementia
Alzheimer’s Society
NIHR Dementia Research Workshop
14 January 2011
NIHR Dementia Research Workshop
14 January 2011
Applying the Research
Specific task:
To suggest ways to improve the “translation” of research into better treatment and care by developing stronger links between academics and research “end users” and working with existing bodies to improve knowledge transfer across the health and social care sector.
NIHR Dementia Research Workshop
14 January 2011
MembershipClive Ballard: Alzheimer’s Society
Alistair Burns: National Clinical Director for dementia
James Goodwin: Age UK
Martin Green: English Community Care Association
Joe Korner: Stroke Association
Louise Robinson: University of Newcastle
Noreen Siba: International Longevity Centre
George Tadros: Royal College of Psychiatrists
Rebecca Wood: Alzheimer’s Research Trust
Barbara Woodward Carlton: Lay member
NIHR Dementia Research Workshop
14 January 2011
Outcomes of the group• Two face to face meetings• Three general themes emerged:
key importance of educational curricula
dissemination of research findings
linking research to outcomes• Central role for carers at all stages • Barriers to implementation
make best use of existing infrastructure
absence of mandatory sanctions
need for incentives
lack of awareness with commissioners
NIHR Dementia Research Workshop
14 January 2011
Specific suggestions for translationIn line with the current outcomes focused dementia implementation plan:
General Hospital Care: better dissemination of research evidence for improved care
Reduction of antipsychotic use: dissemination of research evidence
Support for carers: publication of the independent evaluation of demonstrator sites programme
Timely diagnosis: promotion of e-GP resources to primary care, adoption of a screening tool (eg GPCOG)
Care Homes: Training of staff using workforce advisory group
Others: prevention
end of life care
NIHR Dementia Research Workshop
14 January 2011
Next steps
Wider consultation
Harmonisation with NHS and social care architecture
Translation of research in social care
National Institute for Health ResearchDementia Research Workshop
14 January 2011
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