A unified voice for aphasia

Linda WorrallEllayne GanzfriedNina Simmons-MackieJackie HinckleySarah 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 unified voice for aphasia

International health and disability agendas increasingly shape services.

Links with peak global health and disability organizations are important for advocacy and awareness of aphasia.

The World Health Organization has approved the World Stroke Organization as one of their non-governmental organizations in official relations.

Aphasia United is a member of the WSO.

WHO

WSO

AU

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

Aphasia AllianceBASSpeakability

AIA, Verein der Aphasiker Sitz Bad Segeberg e.V. etc

NAA, Aphasia Hope Foundation, International Aphasia MovementANCDS, ASHA, CASLPA, etc

AAA, Talkback, Aphasia NSW,

AphasiaNZ

Uniting existing national and international organizations and individuals

ConsumerAIA

Aphasia AllianceNAA

Professional ANCDS, ASHA,

SPA, RCSLT, IALP

ResearchIALP

The Academy of Aphasia

IARC/CAC/BAS

Progress to date

The concept for Aphasia United was first discussed at CAC in Fort Lauderdale, Florida

Website created www.aphasiaunited.org

2011

2012

Inaugural summit held after IARC in Melbourne, Australia

Discussion paper published in World Beat, ASHA Leader.

January 2013

October 2012

Governance modelled on Movement for Global Mental Health

May 2013

Key features: 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:Combine existing knowledgeDevelop processes for transferring knowledge across

cultural and national boundariesIdentify 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

A recent study determined the research priorities of a group of Americans with aphasia (Hinckley et al., in press).

This study will be replicated elsewhere with other stakeholders.

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

SecretariatThe voluntary secretariat is responsible for Aphasia

United’s administration.

The current secretariat is Linda Worrall, Nina Simmons-Mackie, 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.

The roles of the secretariat are to:Support and advocate for Aphasia UnitedMaintain the websiteCo-ordinate or lead key strategic working groups of the

Advisory GroupPropose new members of the advisory group, with a

focus on maintaining and increasing diversityProvide, 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

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

AffiliatesAffiliates 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

AAA, CCRE Aphasia Rehabilitation, Australian Society for Aphasia

AphasiaNZ

ANCDS, ASHA, NAA

Association Internationale Aphasia

Advisory Committee

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 Sandt-

Koenderman, The Netherlands

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 paperTitle: Stroke and aphasia: unilateral neglect? /The marginalization of aphasia within stroke research, practice and policy/ Stroke and aphasia: the parting of the ways.

BackgroundPractice – 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 paperMethods Literature reviews? What type?

Practice Do PWA have poorer outcomes? 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?

Speech pathology time and resources - Aphasia swallowed up with dysphagia in acute settings?

Lack of guidelines for clinical practice? Information available in other languages or interpreter required. No policy for

aphasia. 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?

$ to stroke versus aphasia support organizations – 30%

Others?

Stroke and aphasia paper

Potential recommendations

1. All stroke clinicians and researchers have mandatory aphasia training (by PWA).

2. All stroke publications require justification for non-inclusion 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.

Stroke and aphasia paper

Process and timelines

Authorship

Others?