Transcript Title

Dementia conference
Write up of ideas
October 22-23, 2012
Draft for Discussion
Executive summary of this document
This document attempts to capture and build upon the main themes and ideas discussed
during the course of the two day conference convened on 22 & 23 October by the Evington
Initiative. It also incorporates post-conference feedback we have received over the last week.
The list of participants is shown on page 17 of the appendix.
There are eight main ideas (listed on page 2) which have been worked up into one page
summaries which describe the core idea, the objective, rationale, key actions, key success
factors and risks.
In all cases these summary pages deliberately go beyond what was discussed on the idea in
order to try to flesh out these ideas further and to build a bridge into the next phase of the
Evington Initiative, which needs to be about implementation with a view to having an impact on
Dementia as a disease and those who live with it, whether as a patient, carer or wider family
and friends.
As a participant in the conference, we would ask you to read through the document and send
us your feedback (or for those who have kindly given feedback, your additional thoughts) and
ideas to improve these descriptions as to what we should be doing next, as well as offering
where you would like to play a leadership role in working groups which will be formed to take
these ideas forward.
We have also included a blank template (page 15) which could be used to work up any other
theme or idea to the equivalent level as the others in this document. We would very much
welcome this input.
1
Key initiatives and actions discussed at the Conference
1
Virtual Research Institute
2
Supporting scientific research through large scale cohort studies
and big data
3
Diagnosis and sign-posting (care pathway)
4
Self-care and at home care (care pathway)
5
Model care community (care pathway)
6
Workforce development and training (care pathway)
7
Incentives and scale
8
Raising awareness and improving perception of dementia
9
Suggested role and actions for business and government
10
Other suggestions
2
1 Virtual Research Institute
1.
Objectiv
es
To improve significantly collaboration and facilitate knowledge sharing between organisations involved
in research and management of dementia through a Virtual Institute for Dementia Research
Rationale
Actions to take
▪
▪
Multiple organisations involved in research and management of dementia
today so clear need to:
– Develop a jointly agreed agenda of the several key organisations
– Align and coordinate work and knowledge, data and resource
sharing of these organisations
– ‘Manage and connect the whole picture, not work in silos’
▪
Description
▪
▪
Review the model and experience of Cancer Research UK to define the scope
for the new organisation (collaborate with Mike Richards)
Prepare, review and refine proposal on
– Joint objectives and agenda of the virtual institute (including developing a
large scale cohort)
– Organisational design and leadership structure of the new organisation
– Required funding
– Enhanced processes for collaboration and knowledge sharing
– Change management and implementation plan
– Engagement of stakeholders and other organisations
Development of an overarching virtual organisation encompassing all
key stakeholder organisations
Strong leadership to align multiple organisations involved (bringing
together scientists from the Dementia Research Champion group,
pharma, Alzheimer's Society and ARUK plus CEOs of large businesses
with change management expertise)
Key success factors
▪
▪
▪
Strong leadership
Broad-scale change management to ensure implementation
Collaboration and support from broad range of organisations involved
Potential working group participants
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this
group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
Constraints/risks
▪
Different agendas, processes and structure of the key stakeholder
organisations
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
3
1
An important steps to improve collaboration is defining specific
changes needed in mindsets, behaviours and practices
From …
Sector will
benefit from
change in
behaviour
and
approach to
collaboration
…
… To
…
…
…
…
…
…
…
…
… allowing
the sector to
make a step
change in its
effectiveness
4
2
Supporting scientific research through large scale studies
and big data
To develop the best possible large scale cohort study with open access to researchers, ensuring breadth
and depth of data on dementia development
Objectives
Rationale
Actions to take
▪
▪
▪
▪
▪
Current large scale cohort studies do not always have the right
characteristics/information or large scale population to study
dementia
Current studies limited to medical and biomedical data which limit the
opportunities of researchers in potential insights into dementia at the
early, pre-symptom stages
Current cohort studies are non-standardised
▪
▪
▪
Description
▪
Building on existing cohorts (e.g., Biobank/combination of other
cohorts), developing a large scale cohort study for dementia using data
from variety of sources including NHS records, biomedical samples as
well as user generated, commercial data, utilities and mobile data etc.
▪
Strengthen DeNDRoN (and ideally sign up every person diagnosed with
dementia)
▪
Gain permission for access to non-medical commercial/consumer
data which is over 2 years old for research use. Also, to potentially to
complement cohort studies
Define what is needed from a large cohort study
Map existing landscape of cohort studies and understand the advantages and
disadvantages of each study
Identify the best possible combination of existing cohorts to develop the
dementia study on
Prepare, review and refine proposal on
– Ways to improve and build out the ‘new’ cohort for the study of dementia
(e.g. how to add non-medical data)
– Requesting access to outdated non-medical data from 1-2 organisations
Liaise with cohort developers, government and business to implement
Key success factors
▪
Collaboration and support from developers of existing cohorts, academic
scientists in the field, pharma, government and data owners
Constraints/risks
Potential working group participants
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this
group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
▪
▪
▪
Resources available to shape then fund improvements/additions to the
existing cohorts
Unwillingness of organisations to share sensitive data
Technological and organisational issues in adding new types of data to existing
cohorts
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
5
3-6 Several initiatives were linked to improving care pathway for dementia
Independent
Presymptom/
Early
symptoms
Visible
symptoms
At-home care and
social care support
Diagnosis
Appropriate
medical &
social
support
Increasing
medical
and social
needs
Hospital
care
Acute
medical
treatment
Care home
residence
Institutional
care
6
3 Diagnosis and sign-posting (care pathway)
To ensure timely, accurate detection and diagnosis of cognitive impairment, with increased post-diagnosis support for patients, families
and care-givers
Objectives
Rationale
Actions to take
▪
▪
▪
▪
▪
Current detection and diagnosis of dementia is inconsistent and often
not in line with national guidelines
Over 60% of dementia patients are never diagnosed
Health system needs to focus on brain health throughout life, not just
in light of cognitive impairment
Some doctors sceptical about the value of diagnosis, given poor
prognosis and especially limited effective intervention
Description
▪
▪
▪
▪
Key success factors
Development of a Dementia Disease Registry (similar to diabetes in
Scotland) to track benefits of early diagnosis, support large scale
research (specifically, DeNDRoN) and en-able better tracking of patient
outcomes and care received
Significant improvement in the dementia diagnostic process and
diagnostic rates
A change in the terminology and focus to cover cognitive impairment
(beyond exclusive focus on dementia)
Campaign to educate doctors and public regarding the benefits of
early detection and diagnosis
Potential working group participants
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this
group
Please also let us know who you believe are essential members of this
group
Next steps
▪
Prepare, review and refine proposal for
– Development of national registry for dementia patients, linked to a broad
disease management system to track patient outcomes
– Upgrading of memory clinics to BRAIN HEALTH CENTRES, with direct
patient access not limited to GP referral
Liaise with government and other stakeholders to implement
▪
▪
▪
▪
▪
▪
▪
Collaboration and support from doctors, government and researchers
Universally accepted care pathway for dementia diagnosis
Broad-scale behaviour change to ensure implementation of new proposals
Greater awareness and clear case for benefits of early diagnosis for the public
and patients
Constraints/risks
▪
▪
Differences in CCG/Trust resources, structure and processes make it difficult to
apply universal guidelines
Resources available to fund Registry and increase scope of memory clinics
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
7
4 Self-care and at home care (care pathway)
To propose interventions and innovations that could improve independent and at-home care, empower and assist carers and conduct
research required to assess impact and effectiveness of these approaches
Objectives
Rationale
Actions to take
▪
▪
▪
▪
▪
▪
Currently self-care and at home care are highly variable and often feel
to the patient like ‘no man’s land’
There is no training / advice for carers
There are pockets of best practice across the country, with
interventions and innovations that could be scaled up
A consistent approach needed to assess impact of various
interventions, prior to large-scale rollout
Improved care in the early stages could potentially slow disease
progression and allow patients to stay at home for longer
▪
Description
▪
▪
▪
▪
Research focused on development/identification of the most effective
interventions and innovations, including:
– Assessment tools to measure effectiveness of services and
technologies designed to help patients living at home
– Individualised, longitudinal approach to assessing patient
outcomes, to understand individual patients’ progress or
deterioration relative to their own baseline
– Consistent quality standards for memory clinics and other
medical and social services
Public/private partnerships to create and improve communities for
patients living at home and in the community
Education to help patients and their carers to improve care at home
Key success factors
▪
▪
▪
▪
▪
▪
▪
Next steps
▪
▪
▪
Collaboration and support from CCGs, government and NGOs/patient groups
Development of credible policy proposal and business case for proposed
changes
Constraints/risks
Potential working group participants
To be decided
Please let us know if you would like to play a leadership role in this group
Please also let us know who you believe are essential members of this
group
Prepare proposal for improvements in at home care including:
– Development of new tools and approaches to facilitate better research into
care effectiveness and patient outcomes
– Recommendations of proposed standards of care for patient services
– Draft policy document on impact of planning and other regulations on
patients living with dementia
– Explore possible centre for development and evaluation of psycho-social
interventions
Engage with the dementia community to test and refine proposed schemes and
initiatives
Liaise with government and CCGs to implement
Time required to implement proposed changes, particularly changes requiring
amendments to legislation
Variances in CCG/Trust resources, structure and processes make it difficult to
apply universal best practices
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
8
5 Model care communities (care pathway)
Objectives
To improve existing quality of life and care in the care homes based on the new model care communities
Rationale
Actions to take
▪
▪
▪
▪
Significant improvements are needed in existing care home models
and structures which are typically not designed with the needs of
dementia patients in mind. 67% of people in care homes have dementia
Care homes are ‘stand-alone’ institutions with insufficient links to the
community
Care homes need new talent management models to ensure
continuity and improved care
▪
▪
Description
▪
▪
▪
Development of model care community with:
– Buildings and estate designed to be a community
– Social and leisure activities that keep elderly residents engaged
as part of the community
– Increased awareness of patients’ natural body rhythms and
defining best practice for medication, including timing and use of
light
– Use of other technologies to improve patient well-being
– Close links with local schools to deliver education and advice to
families and carers
– Improvements in staffing model to ensure continuity of care
Care home assessed through continuous research and an evidencebased toolkit to inform scaling and rollout
Transparent ratings of care homes to inform patient and family
decision-making
Potential working group participants
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
Prepare proposal and business case for the development of model care
community pilot
Approach private and public sector stakeholders for funding, collaboration and
partnerships
Engage with researchers and others to develop best-practice approach for all
aspects of the care home e.g.,
– Dementia-friendly communities
– Innovations in patient care
– Patient care technologies
– Staff training
– Impact assessment and record keeping
– Carer training for interaction with loved ones in care
Key success factors
▪
▪
Securing of funds to finance pilot and prove the concept
The development of a cost effective business model to appeal to payors (GGCs,
insurers, families)
Constraints/risks
▪
▪
▪
Prohibitive cost of many innovations, technologies and best practices
Planning permissions to develop and build care community
Talent sourcing and management
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
9
6 Workforce development and training (care pathway)
To develop skills and increased awareness of dementia among medical professionals, care workers, community workers and family or
other non-paid caregivers of dementia
Objectives
Rationale
Actions to take
▪
▪
▪
▪
▪
▪
▪
▪
The vast social care workforce has limited supervision, low education,
poor training and high employee turnover resulting in sub-standard
patient care
Medical staff in acute settings not equipped to work with dementia
patients and often over-medicate patients to manage behaviour
Unpaid carers have insufficient skills/knowledge but conduct the
majority of care work
There is opportunity to involve volunteers
▪
Create training modules, materials and for various stakeholders
Pilot training programmes and refine prior to full roll-out
Use insights from pilot to develop proposal for national rollout
Engage with private sector (e.g., retail) to secure space for delivery of family
and community training
Liaise with government and other stakeholders to implement
Description
▪
▪
Rethinking the workforce model at all levels of dementia care to ensure
the right calibre of people are staffed in key positions
A workforce training model (e.g., a pyramid model) to cascade learning
to all levels of dementia care-givers
– Training module for consultants and senior level care experts,
including a train-the-trainer component
– Blended learning (incl. e-learning) programmes for various levels
of care workers, all staff in care homes and volunteers
– Learning packs/apps to train families and unpaid care-givers
using blended learning, with classes delivered by volunteers and
social care workers
Key success factors
▪
▪
▪
▪
▪
Collaboration and support from doctors, care industry players, government and
NGOs/patient groups
Development of scalable, cost effective programme
Funding for pilot programme to demonstrate proof of impact
Broad-scale behaviour change to ensure implementation of best practices
Large-scale community engagement
Potential working group participants
Constraints/risks
▪
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this
group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
▪
▪
Differences in CCG/Trust resources, structure and processes make it difficult to
apply universal best practices
Limited public and private funding for training
Ability to scale and deliver nationally
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
10
7 Scale and incentives
To create the best incentive structures to facilitate the broad behaviour changes needed to scale up new innovations and best practices
nationally
Objectives
Rationale
Actions to take
▪
▪
▪
▪
There are pockets of best practice across the country, with innovations
that could be beneficial nationally
In order to scale innovations and best practices nationally, broad
behaviour change is needed, starting with medical and social care
professionals
Appropriate incentive structures need to be developed to help shift
behaviour and encourage adoption of best practices that will improve
patient care
▪
▪
▪
▪
Understand economics of dementia, including cost of dementia for society and
potential benefits of interventions
Prepare proposal for development and introduction of incentive initiatives
Outline incentive schemes in detail
Engage with the dementia community to test and refine proposed schemes and
initiatives
Liaise with government and CCGs to implement
Description
▪
A series of incentive programmes to drive the adoption of innovations
and best practices from local to national level, for example
– Financial incentives e.g., GP payments, tax breaks, benefits etc.
– Formal recognition e.g., awards for excellence in dementia care
– Care banks to encourage people to care for dementia patients in
the community in return for bankable ‘care hours’ e.g., Care4Care
in the UK, similar system in Japan
Key success factors
▪
▪
▪
Collaboration and support from CCGs, government and NGOs/patient groups
Development of credible policy proposal and business case for proposed
changes to payment and commissioning approach
Large-scale community engagement
Potential working group participants
Constraints/risks
▪
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this
group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
▪
▪
Time required to make proposed changes to financial incentive structure of GP
and hospital payments
Existing fragmentation of healthcare system
Credibility and impartiality of any proposed awards
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
11
8 Raising awareness and improving perception of dementia
To significantly raise public awareness, create and communicate a compelling story to improve current perception of dementia and
caring for parents generally
Objectives
Rationale
Actions to take
▪
▪
▪
▪
▪
Rising but still low public awareness about the disease, its
symptoms, progression and costs to society
Fear, stigma and overwhelmingly negative story currently
associated with dementia in society
Clear need to mobilise society, including younger generation,
through more compelling and caring story of hope
Need to recognise that dementia is part of larger issue regarding
caring for your parents
▪
Prepare, review and refine proposal for
– National social marketing research project to identify current levels of
awareness and perception of dementia
– Setting up a group of professionals to work on the new compelling story
and unique ideas for dementia
– Funding required for development and implementation of the campaigns
– Implementation plan for the new campaigns and ideas
Liaise with all stakeholders to implement
Description
▪
▪
▪
Development of a broad awareness campaign based on a new
compelling story of hope and caring for older people and intergenerational connections within families
Development of a unique fundraising/awareness raising idea for
dementia (e.g. Race for Life)
Bringing together groups of professionals with relevant expertise to
develop and implement such campaigns :
– government and charities currently working on dementia
campaigns
– top creatives and brand experts from marketing / advertising
agencies
– Business leaders with experience in large scale campaigns for
social causes)
Potential working group participants
▪
▪
▪
To be decided
Please let us know if you would like to play a leadership role in this group
Please also let us know who you believe are essential members of this
group
Next steps
▪
▪
▪
Key success factors
▪
▪
▪
Collaboration and support from all groups involved
Access to professionals with relevant expertise to design and especially
execute the campaigns
Ability to find compelling ideas that would mobilise society
Constraints/risks
▪
▪
Resources available to fund campaigns and new ideas
Strong existing negative perceptions of dementia in the society based on the
gruesome symptoms of the disease
Identify working group for this initiative by November 5, 2012
Convene working group participants by November 16, 2012
Develop draft proposal by December 14, 2012
12
9
Suggested role and actions for business and government
(post-it notes)
Suggested role and actions of business
Suggested role and actions of government
Help to raise awareness and engage public:
▪ Help us access the wider public for awareness raising,
development and research
▪ Work with the charities on awareness campaign
▪ Head the awareness campaign
▪ Create broad marketing campaign
▪ Work on awareness raising and joint projects
▪ Support shared resource / info for next generation
▪ Get the next generation involved
Provide funding for research and innovation:
▪ Bring investment
▪ Provide funding for development of assays to assess impact of
treatment / intervention
▪ Mobilise resources – financial and human
▪ Fund innovation and innovative ideas
▪ Sponsor
▪ Support innovation
Bring business skills and expertise:
▪ Bring business skills and outlook to dementia care and research
▪ Help us understand / build commercial case for action
▪ Help develop scale
▪ Speak out (when appropriate)
Facilitate access to commercial data
▪ Release data after time to allow organised data-mining for
research
▪ Form data partnerships for research
▪ Partnership with research community to develop and implement
validated care services
▪ Facilitate / share (when possible)
Other: Make all business dementia friendly
Continue support and focus on Dementia:
▪ Dementia is very urgent and needs bigger actions now
▪ Continue support for dementia - more urgently
▪ Keep the priority high and get international support
▪ Stay committed to real change, not have this as short term fad, stay the
course
Increase investment:
▪ Provide more funding
▪ Provide new ring fenced funding for strategic awards in dementia BY
groups spanning patient care (truly multidisciplinary, Mouse models)
▪ Invest in education of health workers, carers, the public
▪ Provide strategic investment in research
Develop policies and regulations for dementia:
▪ Plan regulation for dementia
▪ Work on reimbursement policy for provision of care services
▪ Develop evidence based policy
▪ Make commissioning flexible
▪ Develop directives to encourage de-commissioning risks
▪ Stimulate and facilitate investment into dementia:
▪ Create incentives for investment
▪ Incentivise
▪ Provide economic development grants for development of ‘ageing
communities’
▪ Encourage entrepreneurial approach in all sectors
Develop further awareness campaigns:
▪ Raise awareness
▪ Create national campaign / debate
Other:
▪ Pull in big pharma
▪ Support a Register
▪ Develop smooth and coherent pathway to support carers at home
13
10 Other suggestions
▪
Emulate the successful practices in other sectors and countries:
– Re-branding of dementia in Japan
– Cancer in the UK and USA
– Management of diabetes in Scotland
▪
Engage with other potential partners, including:
– Oxford e-Research Centre
– Economic and Social Research Council
– UK e-Infrastructure Academic Users
– Alzheimer’s Disease International
▪
Strengthen peer-to-peer collaboration:
– Increase links between academia, big pharma, biotech and government
– Ensure structured sharing of data, methodologies, software and expertise
– Develop infrastructure for data collection, quality control, analysis, storage and sharing to ensure
good governance and protect patient privacy
▪
Investigate proposals to streamline regulation of clinical trials to facilitate more phase 3
pharmaceutical trials:
– Address reimbursement for dementia-related drugs
– Extend patents for dementia drugs to make pharma investments more commercially viable
▪
Conduct more research on non-pharmaceutical interventions
▪
Actively encourage broader data collection:
– Use surveys, social machine (online, mobile devices), tracking of patient care outcomes
– Big data e.g., retail data
– Data on carers
14
10 Initiative X
Objectives
...
Rationale
▪
Actions to take
▪
…
…
Description
▪
…
Key success factors
▪
…
Constraints/risks
▪
…
Potential working group participants
▪
…
▪
…
Next steps
15
Proposed initial structure to lead initiatives (before establishment of a
Virtual Research Institute)
▪
▪
▪
▪
▪
▪
▪
▪
Liaise with
patients and
represent patient
interests
Support and
endorse initiatives
Ensure links with
other relevant
stakeholders
Help to secure
funding
Help to raise
awareness
and engage the
public
Provide funding
for research and
awareness
Contribute
business expertise
Offer use of
commercial data
for research
▪
Patients
▪
▪
▪
Working
group –
Initiative n
Working
group
initiative
n-1
Working
group –
initiative
…
Working
group –
Initiative
1
Central
steering
committee
(TBD)
Working
group –
Initiative
5
Support and endorse
initiatives
Provide investment
Develop policies and
regulation
Continue to raise
awareness
Working
group –
Initiative
2
Working
group –
Initiative
3
Working
group –
Initiative
4
▪
▪
▪
Offer research
capabilities, facilities
and expertise
Provide leadership in
the design of
innovations and
impact assessment
Encourage talented
young researchers
and professionals to
take part in working
groups
16
Conference participants
Name
Organisation
Name
Organisation
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Ms. Jan Hall
JCA Group
Kings College London
Clayton Dubilier Rice
Prof. Carol Brayne
University of Cambridge
Mr. Marc Bolland
Marks & Spencer
Dr. Arlene Astell
University of St Andrews
Mr. Stephen Grabiner
Private investor
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Prof. Clive Ballard
Sir. Terry Leahy
Prof. Derek McAuley
University of Nottingham
Mr. Bruce Altevogt
Institute of Medicine
Prof. Russell Foster
University of Oxford
Prof. David De Roure
University of Southampton
Prof. Peter Rothwell
University of Oxford
Prof. Rory Collins
University of Oxford
Prof. Alistair Burns
University of Manchester
Prof. Ken Turner
University of Stirling
Dr. Franka Meiland
Amsterdam Center on Aging (VUmc-VU)
Prof. Tom Kirkwood
University of Newcastle
Dr. Claire Surr
University of Bradford
Prof. Emma Reynish
University of Stirling
Prof. Nick Fox
University College London
Dr. Marina Zvartau-Hind
GlaxoSmithKline
Dr. Mene Pangalos
Astra Zeneca
Mr. Roy Twyman
Janssen Research & Development, LLC
Ms. Tina Boggiano
Novartis
Mr. Quentin Cooper
Broadcaster / BBC Presenter
Dr. Derek Hill
UCL, IXICO
Dr. John Hall
IXICO
Mr. Bahbak Miremadi
Red and Yellow Care
Mr. Jamie Cattell
McKinsey
Mr. Huw Rowley
Author of upcoming book, Dementia Essentials –
Lessons from Carers
▪
▪
▪
Ms. Halima Khan
Nesta
Mr. Clive Humby
DunnHumby
Mr. Richard Cousins
Compass Group
Mr. John Drew
McKinsey
Dr. Graham Stokes
BUPA
Mr. Stuart Fletcher
BUPA
Sir. Mark Walport
Wellcome Trust
Dr. John Williams
Wellcome Trust
Dr. David Lynn
Wellcome Trust
Mr. William Greenacre
Wellcome Trust
Dr. Robin Buckle
MRC, Lead on Dementia
Mr. Jeremy Hughes
Alzheimer’s Society
Mr. Andrew Chidgey
Alzheimer’s Society
Ms. Shirley Cramer
Alzheimer’s Research UK
Mr. David Mayhew
Alzheimer’s Research UK
Dr. Eric Karran
Alzheimer’s Research UK
Prof. Malcolm Grant
President & Provost UCL
Mr. Paul Bate
Cabinet Office
Ms. Rebecca Wood
Alzheimer’s Research UK
Mr. Mark Treherne
UKTI
Dr. Hakim Yadi
UKTI
Mr. Greg Nugent
London 2012
Prof. Peter St George Hyslop
University of Cambridge
Prof. Simon Lovestone
Kings College London
Prof. Martin Rossor
UCL
Prof. Martin Orrell
UCL
Prof. Barbara Sahakian
University of Cambridge
Mr. Theo Costain
17
Back up - flipcharts
18
Discussion: High impact innovations in research (Day 1)
For the next 30 mins, please discuss the following topics in your tables groups
Please nominate 1 colleague to present a synthesis of your discussion to the group
Questions to discuss:
What are the highest priority/highest impact
innovations in dementia research?
What needs to happen to make an impact on
dementia research?
What could this group contribute to advancing
these high potential initiatives?
19
Discussion: High impact innovations in research (flipcharts)
▪
▪
▪
Q1.
– Understanding mechanisms, develop biomarkers,
–
Q1.
▪
Q2.
Q2.
– Collaboration across disciplines
– Regulation needs review
▪
Q3.
– Sharing and frank discussion in a structured way
– Implementation – why is research not being taken
–
–
▪
efficient, cheap, good for screening
More accurate progression measure
▪
up?
Sustain pharma interest – how?
Caregiving crisis looming – will soon be more
people with condition than possible carers
▪
Q2.
▪
Q3.
Diagnosis
Early
Robust
Phenotyping
Business data cohorts
stakeholders
– Learn from other diseases and nations
– Synergy instead of duplication; landscaping
silos)
Q3.
– This group to lead / help to work together
– Regulation and streamlining – putting pressure to
barriers and propose solutions
▪
▪
▪
– Animal models – new, alternatives, pathways
– Broad social engagement, coordination from
– Collaborative ethos – Public Private Partnerships (less
– Domains to invest in
Q1.
–
–
–
–
–
– Sharing of data
– Marker like smoking for lung cancer
▪
Q1. Better understanding of the disease biology:
– Funding
– Attracting people to the field (change the image)
– Linking with other diseases
– Diversity of hypotheses
Q2.
What can we do with patients now?
– Pharmacological (symptoms)
– Non-pharmacological (lifestyle, psycho-social)
– Better clinical tools:
– Identify patients (clinical trials, info clinic)
– Differential diagnosis at presentation
Q3.
– Engage with other countries
– Consensus
– Raise money
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Discussion: Gift for the Future (Day 1)
For the next 30 mins, please discuss the following topics in your tables groups
Please nominate 1 colleague to present a synthesis of your discussion to the group
Questions to discuss:
Is the Gift for the Future cohort study a good
idea?
If so, what would it take to successfully
implement a cohort study?
If not, what would an alternative be?
Is this cohort study the best use of resources?
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Discussion: Gift for the Future (flipcharts)
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
▪
Private commercial data available
Interesting concept that might be piloted in individuals
where we see change (e.g. memory clinics)
Link to existing cohorts and NHS
Alert the group that there are large consortia operating
already (S.Lovestone)
Q1. Good idea:
– Sort out natural history or other
– Too traditional??
– Should it be about intervention?
– Individual risk focus on broader environmental
questions – age friendly environments
– What is the holistic integrative opportunity?
Possible groups: People who might develop dementia
Risk of technology assumption
Q3. Link cohorts?
Need data that can be analysed across decades
without being reliant on specific technology
Integration of existing cohorts with NHS and others
We want access to data from all providing services
(HC and SC)
Bigger pool of people who can be recruited into
therapeutic trials
GOTF for primary, secondary and tertiary prevention
Study on value
Everyone with dementia into a study (from memory
clinic)
▪
Q1. It’s a good idea but try to build on what already exists
– Biobank
– EPIC
– ‘1 million women’
– Then add GP extraction services, user-generated data,
GP QAF points
▪
Q2.
▪
could be added to enable a large scale cohort study,
e.g. cognitive inpatient test (CI)
– Potential to link social research on the diagnosed
Q4. Yes!
▪
▪
▪
▪
– Identify what is missing from existing cohorts which
Gaps:
– Concentrated on cognitive health
– Continuous monitoring
Leverage biobanking experience and infrastructure
Up to 75 y.o. and include those in d…
Can we get these data without cohort study – individual
study
▪ Real opportunity to work together closely
▪ Real opportunity in the UK (it does punch above its weight)
▪ Getting patients early diagnosis so drugs can get to them
▪
▪
early is essential
Making regulatory environment easier is also essential
Looking at re-imbursement for pharma and healthcare
providers is key
22
Discussion: Perspectives on the Gift for the Present (Day 2)
For the next 30 mins, please discuss the following at each numbered table
Please nominate 1 colleague to present a synthesis of your discussion to the group
Questions to discuss:
Diagnosis and sign-posting
Self-care and at-home care
“Model care home”
Workforce (training, economics, quality, regulation)
Incentives and scale (behaviour change,
commissioning)
Acute care
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Discussion: Suggested actions for Gift for the Present (flipcharts)
Self-care and at home care
Workforce (development and training)
▪
▪
Assessment tools
– Inform services and technologies
– Longitudinal view of individuals
– Understanding what is “normal” for that person?
– What constitutes a deviation?
– Quality standards for memory services
– Improve planning services, housing models
to smooth transitions/relocations
– Public/private partnership to facilitate these
communities
Cost effective pyramid training model
– Experts master level (top level)
– Train the trainers (flexible e-learning, blended elearning): various professionals, dementia specialists,
other staff, e.g. cleaning
– Paid workforce : care home support, home workers
– Family carers / volunteers (bottom level): support,
pack/app level 1-4 (for different phases of dementia
journey), M&S Coffee shops
Model care community
Incentives and scale
▪
▪
▪
Planning regulations
The village red not artificial
– Building / estate especially, ‘campus’ feel
– Activities: social, leisure, ‘everyday’, exercise
– Rhythms (e.g. sleep, light, medications)
– Education and advice for families
– Link to local schools
– Staff turnover profile and development for continuity
and quality
– Ongoing research (evidence based toolkit)
– Economic model of care
– Ratings
▪
Incentives:
– Money (payments benefits, tax breaks, GP payments,
etc.)
– Satisfaction (peace of mind, solutions to a problem)
– Recognition (“Good Carer award”, etc.)
– Care Bank (C.F. Japan vouchers)
Scale:
– Family
– Community
Business
– Local government etc.
– National
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