The Way Forward – A New Disability Policy Framework For Australia
Appendix G: Australian Institute of Health and Welfare 2008, Scan of disability databases in the non-government sector, December
Summary
The Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) engaged the Australian Institute of Health and Welfare (AIHW) to carry out a scan for disability-related data holdings in the non-government sector—private sector and non-profit organisations—on behalf of the Disability Investment Group (DIG). The scan was undertaken in late October and November 2008.
Using agreed key words for online searching the scan revealed a substantial number of government-funded disability databases or databases with disability-related data items, managed by government. A relatively low number of private sector data holdings were located: 23 substantive holdings of person-level data and an additional 4 holdings of data about disability goods and services, described in the following pages. This confirms the findings of another search for disability resources by the University of New South Wales (Edwards & Fisher 2008). A large number of service directories (lists of disability support agencies and addresses) were also located but were considered out of scope.
The nature of data items contained in the various databases is diverse and the level of formal and accessible documentation ranges from scant to good. The general lack of comprehensive metadata and documentation hampered the assessment of data comparability. Most databases appear to contain standard demographic data items but there is considerable variation in disability measures and related data items. Data comparability problems, patient/client consent issues, and a general lack of good quality documentation are likely to pose obstacles to use of these databases for other than their intended purposes.
Table 1 lists the databases for which more detailed information was sought and received and the type of information that was made available to the AIHW. An ‘X’ indicates that the information was not provided and could not be located online.
| Publicly available data quality information |
Number of records |
Co-morbidity data |
Listed data items |
Funding information |
Appropriate collection years |
National data |
|
|---|---|---|---|---|---|---|---|
| Multiple Sclerosis Databases | 
|
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|
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| National Joint Replacement Registry |
|
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| IDEAS Disability Info Line Service User Records |
|
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|
|
|
| Intellectual Disability Exploring Answers (IDEA) Database—WA |
|
|
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|
|
|
|
| Australian Cerebral Palsy Register |
|
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|
|
|
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| The Spastic Centre Client Database |
|
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| WA Register for Autism Spectrum Disorders |
|
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| Motor Neurone Disease Database |
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| Australian Motor Neurone Disease Registry |
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| Australian Twin Registry |
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| National Trauma Registry Consortium (Australia & New Zealand) |
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| Australian Cystic Fibrosis Data Registry |
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| Australian Longitudinal Study on Women’s Health: Older Cohort, Wave 4, 2005 |
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| Patients of NSW Developmental Disability Health Unit |
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| I-CAN Instrument for the Assessment and Classification of Support Needs |
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| Epilepsy Action, Australia |
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| Tasmania Epilepsy Register |
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| |
| Australian Rheumatology Association Database |
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| Australian Rehabilitation Outcomes Registry |
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| National Genetic Heart Disease Registry |
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| Australian Spinal Cord Injury Register |
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| Victorian State Trauma Registry |
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| Victorian Orthopaedic Trauma Outcomes Registry |
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Project aim
To identify non-government disability databases in Australia, including information on database scope, content and data comparability.
Methods
The scan for disability databases relied primarily on internet searching, using criteria agreed between AIHW, FaHCSIA and the DIG and direct approach to peak bodies, research and other organisations.
In the initial phase an online keyword search was used to locate organisations with disability data holdings. Around 50 organisations were identified as potential data owners/custodians. These organisations plus 15 member organisations on the AIHW Advisory Committee on Functioning and Disability Data (ACFADD) were contacted by letter to ascertain any data holdings and seek referral to other potential data owners. Responses varied from vague to highly informative.
Following the mail-out, an online search was used to locate readily accessible information on disability databases and annual reports containing disability data.
A second phase involved follow-up communication to obtain further detailed information. Around 30 potentially relevant databases were identified through this process; for various reasons some databases are not included in this report, for example, a lack of sufficiently detailed information or because they were deemed not sufficiently relevant.
Findings
The project encountered difficulty in obtaining detailed information on some databases, which may have limited the number of existing databases that could be relevant. The overall picture is one of very limited publicly available (or any) metadata about data holdings, leaving personal contact as the only way to obtain detailed information.
Not all data owners/custodians were willing to share information about their databases. While some organisations returned multiple responses for requests for information about known databases, some did not respond at all and others said they would respond but did not. Due to the nature of the request of information, which was in part the identification of other organisations’ databases, the snowball effect of information gathering was somewhat restricted by the need to complete the scan in November 2008.
Online searching for disability databases highlighted several issues. Firstly, the majority of databases on disability and community services are government-owned or sponsored. Key words and phrases to identify databases and registers returned far more links to government sites and organisations than for non-government organisations.
Many of the non-government organisations with data holdings stated that they receive government funding for data collection, for example, through an educational or research grant. Other non-government organisations use charitable donations to fund data holdings, or do not collect data due to lack of funding for ongoing maintenance. As many of these organisations rely on philanthropy, the cost of maintaining a database or register could divert financial and human resources away from service delivery into administration. This appears to be a main reason for the predominance of government-funded disability databases.
Secondly, few non-government organisations have database or registry information that is readily available for online use. The accessible sites tend to have registration pages and contact information for people who would like to join a register. Any metadata that might exist does not seem to be available for public viewing, at least not through online searching. Data holdings are similarly not publicly available in de-identified form such as online data cubes. Data may be provided by some organisations upon request, though this was not explored.
Some organisations provide summary information about their databases in annual reports. These summaries tend to be brief and contain little if any information about data quality. The Cystic Fibrosis Data Registry is an example of publicly available information management policy, a rare exception in the field of non-government disability data.
Most organisations collect and hold data for their own purposes, such as keeping account of the client base. Therefore, as long as they are able to obtain the information they need to operate effectively, data quality statements would not appear to be an issue in the operational sense. Many disability data registers operate through a person registering their interest, online or via telephone, with an organisation in order to receive information or practical support. A person from the organisation then contacts the person and enters all required information into the database. Data quality control is essentially monitored at the point of data entry.
Further information on the databases is available on request.
Data comparability
Many of the databases contain similar types of information, such as patient/client demographic data, specific types of disability, and treatment outcomes. While there is some commonality across databases, at a detailed level the data holdings are in fact quite diverse. For example, many collect name, sex, and date of birth though some choose not to include name and record age instead of date of birth. In general though, the demographic data items appear to be similar across the board.
The comparability of data depends on the purpose or intent of the database, and many organisations appear to collect information for their own purposes: to facilitate improved service provision; to estimate prevalence of certain disabilities; to monitor and report on the experiences of people with a specific disability; or to generate a database of information in order to conduct research to advance knowledge about a type of disability.
In some cases, organisations collect their own data in addition to elements defined for the Commonwealth State Territory Disability Agreement (CSTDA) National Minimum Data Set (NMDS). The CSTDA information is already reported by government, and the remaining data need only suit the organisation’s own information needs. In this respect, much of the information about specific disabilities and diseases is not comparable.
A few databases included in the report are not disability databases as such but are more accurately described as injury and rehabilitation databases. These databases could be useful in terms of disability incidence and disability-related functional outcomes.
In terms of collection periods for the data, most databases have existed since 2005 or earlier, though some were more recently established. Almost all are ongoing collections or were established with that intention. Geographic coverage is somewhat varied; around half of the reported databases operate at a national level and the other half collect data on individual states/territories or regions.
Other relevant research
The Social Policy Research Centre (SPRC) at the University of New South Wales published a report in September 2008 titled ‘Disability Policy - Sources for Evidence’. The SPRC report examines disability policy development in New South Wales and provides key information in both government and non-government sectors on journals, publications, academic bodies conducting research, data sources, and listings of peak bodies and government disability agencies (current as at June 2008). Section 5 contains information about data sources in New South Wales, noting AIHW, the Australian Bureau of Statistics (ABS) and the CSTDA NMDS as three main sources of disability data.
The SPRC survey of information sources covered both government and non-government data and information. However, only government collections were identified as having ‘core’ information on disability. Though quite brief and with a focus mainly on New South Wales, the SPRC report is recommended for consideration by the DIG.
Reference and contact details for the SPRC report are as follows.
Contacts
Karen Fisher and Robyn Edwards
Ph: 61-2-9385 7800;
Email: karen.fisher@unsw.edu.au, robyn.edwards@unsw.edu.au;
Fax: 61-2-9385 7838
Reference
Edwards R. & Fisher KR. (2008), Disability Policy – Sources for Evidence, SPRC Report 15/08, Social Policy Research Centre, University of New South Wales, Sydney.
Report URL
http://www.sprc.unsw.edu.au/reports/2008/Disability_Policy.pdf
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