Transcript Document

Linda Worrall
Ellayne Ganzfried
Nina Simmons-Mackie
Jackie Hinckley
Sarah J. Wallace
Rationale for A
unified voice for aphasia
 A unified voice for aphasia – to promote unity
across national and international stakeholder
groups (researchers, clinicians, consumers)
 A unified voice for aphasia – to unite people
living with aphasia, researchers, and clinicians
to create one “voice”.
Rationale for A
WHO
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International health and disability
agendas increasingly shape services.
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Links with peak global health and
disability organizations are important for
advocacy and awareness of aphasia.
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The World Health Organization has
approved the World Stroke Organization
as one of their non-governmental
organizations in official relations.
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Aphasia United is a member of the WSO.
WSO
AU
unified voice for aphasia
A new peak international
organization that aims to bring
together the global aphasia
community and represent its
voice to the World Stroke
Organization.
Googled aphasia organizations
NAA, Aphasia Hope Foundation,
International Aphasia Movement
ANCDS, ASHA, CASLPA, etc
AIA, Verein der Aphasiker
Sitz Bad Segeberg e.V. etc
Aphasia Alliance
BAS
Speakability
AAA, Talkback,
Aphasia NSW,
AphasiaNZ
Uniting
existing national and international
organizations and individuals
Consumer
AIA
Research
IALP
The Academy of
Aphasia
Aphasia Alliance
NAA
IARC/CAC/BAS
Professional
ANCDS, ASHA,
SPA, RCSLT, IALP
Progress to date
2011
The concept for Aphasia
United was first discussed
at CAC in Fort Lauderdale,
Florida
2012
Website created
www.aphasiaunited.org
October
2012
January
2013
Inaugural summit held
after IARC in Melbourne,
Australia
Discussion paper
published in World Beat,
ASHA Leader.
May
2013
Governance modelled
on Movement for
Global Mental Health
Key features:
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The Movement is a coalition whose
individual and organizational members
invest their own resources to carry out
activities that will advance the goals of the
Movement. They can also raise additional
resources for this purpose.
The Movement does not have a
chairperson, bank account or budget.
The Movement is managed by a secretariat
and an advisory group.
Summit outcomes
The Summit
 An opportunity to identify a common
purpose and develop strategic goals
 Consumer, research and professional
representation from Australia, Austria,
Canada, Hong Kong, New Zealand and USA
 Task forces created to expand interest in
involvement in Aphasia United and establish
discussion groups
Goal 1 : Build capacity among consumer
organizations
People with disability must play a central role in
decisions that affect them (WRD, 2011).
People with aphasia must be comprehensively and
authentically involved in the process of advocacy.
Role for Aphasia United: Build capacity in aphasia
consumer organizations to support the involvement of
people with aphasia at an international level.
Goal 2: Build consensus about best practices
for aphasia
No formal evidence-based clinical guidelines exist for
aphasia rehabilitation.
No consensus on what constitutes a rehabilitation
pathway for people with aphasia.
Role for Aphasia United: Guide a best practice
consensus process.
Goal 3: Raise awareness
Aphasia United Summit endorsed by the World Stroke
Organization (www.world-stroke.org).
Role for Aphasia United: Work closely with the WSO
in its awareness campaigns and advocacy roles.
Goal 4: Set an international research agenda
There is a need to:
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Combine existing knowledge
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Develop processes for transferring knowledge across
cultural and national boundaries
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Identify research need areas that can be productively
addressed by the international community.
Role for Aphasia United: Combine the perspectives of
researchers, clinicians, and consumers in determining
international research priorities.
Goal 4: Set an international research agenda
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A recent study determined the research priorities of
a group of Americans with aphasia (Hinckley et al., in
press).
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This study will be replicated elsewhere with other
stakeholders.
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An e-Delphi study will determine a ranked order of
research priorities in aphasia.
Taskforce developments
Research Taskforce
www.aphasiaunited.org developments
 Research in progress
◦ List current research projects
◦ Project alerts
◦ Issue “call” for participants
 Evidence links
◦ links to guidelines and
databases relevant to EBP
Governance taskforce
Secretariat
 The voluntary secretariat is responsible for Aphasia
United’s administration.
 The current secretariat is Linda Worrall, Nina SimmonsMackie, Jackie Hinckley, Ellayne Ganzfried and Sarah
Wallace.
 The www.aphasiaunited.org website has been funded by
the CCRE in Aphasia Rehabilitation and the current hub
is at The University of Queensland.
Governance taskforce
The roles of the secretariat are to:
 Support and advocate for Aphasia United
 Maintain the website
 Co-ordinate or lead key strategic working groups of the
Advisory Group
 Propose new members of the advisory group, with a focus on
maintaining and increasing diversity
 Provide, from time to time, summaries and analyses of
Aphasia United’s activities, including plans for future actions.
 Plan and conduct Aphasia United summits
Governance taskforce
Advisory group
 A voluntary Advisory Group is being assembled to guide
Aphasia United’s activities and strategic direction.
 Working groups will be formed from this group to enable
achievement of goals.
 The Advisory Group will also represent the views of their
stakeholder group in shaping strategic directions.
 Membership on the Advisory Group will change over
time (3 year terms).
Governance taskforce
Affiliates
 Affiliates of Aphasia United may be either
organisations or individuals.
 There are no fees, rather affiliates are invited to
invest their own resources to carry out activities that
will advance the goals of the Aphasia United.
 Register as an affiliate at www.aphasiaunited.org
Current Aphasia United Affiliates
Association
Internationale
Aphasia
ANCDS,
ASHA, NAA
AAA, CCRE Aphasia
Rehabilitation,
Australian Society
for Aphasia
AphasiaNZ
Advisory Committee
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Dr Aura Kagan, Canada
Dr Miranda Rose, Australia
Ms Ruth Patterson, Canada
Dr Anthony Kong, USA/China
Dr Tami Howe, New Zealand
Dr Ilias Papathanasiou, Greece
Ms Janet Brown, USA
Professor Brooke Hallowel, USA
Dr Subhash C. Bhatnagar, India
Dr Simon Horton , UK
Professor Stacie Raymer, USA
Professor Marian Brady, UK
Dr Mieke van der SandtKoenderman, The Netherlands
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A/Prof Deborah Hersh, Australia
Dr Julie Morris, UK
Professor Laura Murray, USA
Mr Keith Lincoln, Sweden
Ms Sarah and Joanie Scott, UK
Professor Anu Klippi, Finland
Dr Donald Weinstein, USA
Dr Jaqueline Stark, Austria
Dr Fabiane M. Hirsch, USA
Dr Glenn Goldblum, South Africa
Dr Clare McCann, New Zealand
Dr Margaret Rogers, USA
Professor Silvia Rubio - Bruno,
Argentina
Dr Katerina Hilari, UK
For discussion today
Aphasia United Summit endorsed by the World Stroke
Organization (www.world-stroke.org).
Role for Aphasia United: Work closely with the WSO
in its awareness campaigns and advocacy roles.
 Aphasia United paper on the relationship between
stroke and aphasia - in a major stroke journal International Journal of Stroke?
Stroke and aphasia paper
Title: Stroke and aphasia: unilateral neglect? /The marginalization of aphasia within
stroke research, practice and policy/ Stroke and aphasia: the parting of the ways.
Background
 Practice – PWA have some of the worst long term outcomes –
why?
 Research – Are PWA included in stroke research? Is sufficient
research going into aphasia research compared to stroke research?
 Policy - Stroke can lead to many types of impairment, but only
aphasia has its own local, national and international associations
i.e. aphasia organizations and centres have developed
independently of stroke organizations – why?
Aim
 To determine whether people with aphasia are equally included in
stroke practice, research, and policy.
Stroke and aphasia paper
Methods
 Literature reviews? What type?
Practice
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Do PWA have poorer outcomes?
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Do PWA get the same quality care as stroke patients without aphasia - More likely
to have an adverse event? Cost more (longer length of stay ). Across the
continuum of care, do they get quality of care? - FAST, TpA, acute care, discharge
destination, secondary prevention?
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Speech pathology time and resources - Aphasia swallowed up with dysphagia in
acute settings?
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Lack of guidelines for clinical practice?
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Information available in other languages or interpreter required. No policy for
aphasia.
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Others?
Stroke and aphasia paper
Methods - Research
 $ spent in aphasia research ~ 30% of $ spent in stroke research?
 # publications in aphasia versus stroke (particularly in mainstream stroke
journals)
 Are guidelines for aphasia rehab as strong as guidelines for hemiplegia,
etc?
 Inclusion of PWA in stroke research? (Ali & Brady articles)
 Many stroke outcome measures are not designed for people with
aphasia, either because they do not include content relevant to
communication or PWA, or because it is not accessible.
 Others?
Stroke and aphasia paper
Methods – Policy & Support
Aphasia associations emphasize accessibility, self determination,
awareness and support. Stroke associations emphasize prevention,
rehabilitation. Thematic analysis of websites?
 Accessibility of stroke organization websites?
 Inclusion of PWA in stroke groups
 # of aphasia specific associations etc – ask them why not join stroke
associations?
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 $ to stroke versus aphasia support organizations – 30%
 Others?
Stroke and aphasia paper
Potential recommendations
All stroke clinicians and researchers have
mandatory aphasia training (by PWA).
2. All stroke publications require justification for noninclusion of PWA in studies.
3. Stroke associations need to advocate for or adopt
aphasia associations.
4. Consider affirmative action for PWA e.g. priority
for stroke unit admission.
1.
Stroke and aphasia paper
 Process and timelines
 Authorship
 Others?