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FACULTY OF HEALTH SCIENCES CENTRE FOR DISABILITY RESEARCH AND POLICY Audit of Disability Research in...
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Transcript of FACULTY OF HEALTH SCIENCES CENTRE FOR DISABILITY RESEARCH AND POLICY Audit of Disability Research in...
FACULTY OF HEALTH SCIENCES
CENTRE FOR DISABILITY RESEARCH AND POLICY
Audit of Disability Research in Australia
Professor Gwynnyth Llewellyn
Research to Action
NDS/ CADR Conference
May 2014
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Overview
To produce a comprehensive picture of disability research in Australia over the last decade with a focus on social research
To determine the gaps in disability research evidence and ascertain research challenges
To consider an evidence evaluation framework applicable to disability research
Commissioned by Disability Policy and Research Working Group (now Research and Data Working Group)
Research Team – led by Centre for Disability Research and Policy with team members from People with Disability Australia (PWDA), National Disability Services (NDS) and University of Melbourne.
Advisory Group – cross sector representation – NGOs, DPOs and DPRWG
Disability Research in Australia
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Context for Audit
Informed by national strategic, policy and directions documents
NDA (2009), NDS (2011), Productivity Commission Inquiry (2011) and National Disability Research and Development Agenda (NDRDA, 2012)
NDRDA directions for research about disability in Australia
Disability demographic profile and trend information
Disability related social and economic inclusion research
Research to contribute to evidence base to improve service delivery and support options
Research on sector development and sustainability and organisational capability
Research about diverse and/or disadvantaged groups
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Conceptual framework
8 domains of everyday life with specified dimensions
Community and Civic Participation
Economic Participation and Security
Education
Health
Housing and the Built Environment
Safety and Security
Social Relationships
Transport and Communication
Informed by UN Convention and national policy documents
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Conceptual framework
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Method and processes
Scientific and grey literature
Scope
Persons with disabilities definition as per UN Convention
2000 to 2013 in Australia
Research defined as reporting the aim of an investigation, method, findings, and conclusions and/ or recommendations
Scientific literature
11 databases using search strategies developed from conceptual framework
Grey literature
9 sources including government and statutory agency reports, research centre reports, reports from non-government organisations and doctoral theses
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Scoping – scientific and grey literature
Detailed inclusion and exclusion criteria results of investigation with aim, method, findings and conclusions/ recommendations
Time period 2000-2013 and with data that pertains to Australia
11 data bases including Informit and 8 data sources of grey literature – the following three yielded results for inclusion
Federal, State and Territory Government Department Reports
Federal, State and Territory and Statutory Agency Reports
Research Centre Reports
NGO/ DPO Research Reports
Doctoral Theses
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Descriptive mapping and analysis
The distribution of research evidence
By domains of everyday life
By focus on people with disability, family/carers or servicesBy diverse and/ or disadvantaged groups of people with disabilityBy environmental and contextual factors
The distribution by type of investigation
17 types including legal, policy analysis, historical analysis and media/ creative arts/ cultural analysis
Four major foci
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Descriptive mapping and analysis
The representation of key policy concepts in research
Using keywording analysis to determine attention given to concepts such as choice, person-centred support
Detailed narrative analysis in selected topic areas
Aboriginal and Torres Strait Islander peoplesPolicy analysis studiesStudies utilising administrative datasetsStudies utilising population surveysReports from AIHW, ABS and Productivity Commission
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Summary of findings
Finding 1
2011 research documents met criteria
1658 from scientific literature, 353 from grey literature
Fragmented and diverse across topics and study designs
NOT a critical mass of research on topics of priority in disability reform agenda
Finding 2
Disability research in Australia is not easily accessible
Under-utilisation of open access journals and difficult to negotiate websites
Invisibility and lack of free access severely limits usefulness to information the disability reform agenda, people with disability, their family and carers
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Summary of findings
Finding 3
Greater concentration of research in areas of health, and to a lesser extent education, where there are established funding bases
Significantly less research on
inclusive and accessible communities,
rights protection, justice and legislation,
economic security, and personal and community support
Primarily one-off, stand alone studies in areas of researcher or organisational interest
Not a mature sustainable research base
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Summary of findings
Finding 4The disability reform agenda leans heavily on human rights and social equity
principles with a values base about choice and control, empowerment, and person-centred support
These concepts are relatively absent from the research evidence base
Finding 5 Greatest proportion of research DOES NOT address the four diverse/
disadvantaged groups that is
Aboriginal and Torres Strait Islander communities
People from culturally and linguistically diverse backgrounds
Women with disability
People with disability living in regional, rural and remote areas
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Finding 6The higher proportion of study designs essentially describe ‘the problem’.
These designs cannot produce evidence based solutions (although they may suggest propose solutions to be tested in the future)
Much less research testing interventions or solutions or evaluating policy initiatives
Encouraging signs of uptake of study design using secondary analysis of population data and administrative datasets
These studies examine larger samples which are more likely to be representative and permit comparison of the circumstances of people with disability with those of their non-disabled peers
Critical to understanding whether the policy initiatives of the disability reform agenda are working, and in the desired direction, and for whom.
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Finding 7
Safety and security, transport and communication, housing and the built environment, social relationships and community and civic participation
Inclusion and participation of children and young people with disability in everyday life
Experiences of people with disability as
Specialist service users in relation to preference, choice, control, goals and , desired outcomes– in health, education, employment, housing, sexuality, personal relationships, marriage and family, transport, communication technologies
Users of mainstream services in relation to preference, choice, control, goals and desired outcomes – in health, education, community and civic participation, transport and communication, safety and security and housing and the built environment
Effective models of accessible and adaptable mainstream services which deliver useful outcomes for people with disability
Under-represented areas in research evidence base
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Under-represented areas continued
Longitudinal studies that follow people with disability over time to better understand the potential drivers (social, economic, cultural, impairment-related) of inequalities
Issues specific to the Aboriginal and Torres Strait Islander people with a disability, women with disability, people with disability from culturally and linguistically diverse backgrounds and people with disability living in regional, rural and remote areas
Co-production of research with people with disability – the involvement of people with disability in the design, implementation and dissemination of research
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Where to from here?
Commissioning secondary research – systematic reviews, secondary analysis of population and administrative data
Commissioning a formal research priority setting exercise
Dedicated investment to stimulate disability research which explores the experience of policy
Including funds within disability research to ensure wider dissemination
Investment in maintenance and biennial update of the Audit as an ongoing resource to
Identify research gaps,
Monitor disability research over time
Assist in developing research collaborations to build capacity, coherence and critical mass in disability research
Recommendations – in the short term
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Recommendations - medium term
Dedicated funding for co-production of research with people with disability and DPOs
Collection of more comprehensive data and stimulating research on diverse and/ or disadvantaged groups and children and young people
Increased efforts and investment to develop a ‘disability identifier”
Routine reporting on disability statistics
Programmatic funding to a network of centres with specific expertise and focus to build disability research capacity (training and research production) in agreed strategic and priority areas
Centre for Disability Research and Policy
www.sydney.edu.au/health_sciences/cdrp/
Email: [email protected]