Appendix B

Abstract - 2018 International Population Data Linkage Network

Conference, Banff (Canada)

Evaluation of the Western Australian population based data linkage Intellectual

Disability Exploring Answers (IDEA) surveillance system

Natalie Strobel, Jenny Bourke Helen Leonard3_{, Alice Richardson, Karen Edmond and}

Dan McAullay

Introduction (What is Known)

The IDEA surveillance system is a population-based data linkage system for

intellectual disability, which combines data from two state government departments. Due to recent policy changes the future of the IDEA system is unknown. Understanding the IDEA system's strengths and limitations will provide data custodians with the

opportunity to re-design the system.

Objectives and Approach

An evaluation of the IDEA surveillance system was undertaken to assess the quality, efficiency and usefulness of the system. The primary objectives were to evaluate systematically and objectively the attributes of the system and provide

recommendations to data custodians and stakeholders to strengthen the surveillance system.

The evaluation was based on the methods from the 2001 U.S. Centers for Disease Control and Prevention guidelines on evaluation of public health surveillance systems. We assessed the following system attributes: usefulness, simplicity, flexibility, data quality, acceptability, representativeness, timeliness, and stability. This was completed by process observation, semi-structured interviews and data analysis.

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Results

Our results found the IDEA system was flexible, acceptable, representative, timely and stable. Given data linkage process and maintaining confidentiality the data linkage process was considered relatively simple. We compared individuals in the IDEA surveillance system to a sub-group of individuals, cerebral palsy with ID, to the mandatory reporting surveillance system WARDA-CP. There were 582 individuals identified in the WARDA-CP surveillance system as having cerebral palsy and ID. Of those identified 501 (86.1%) were also in the IDEA database and 81 (13.9%) were not. There were little differences in Indigenous status, sex and place of residence for cases not identified in the IDEA system.

Conclusion/Implications

The IDEA system has successfully been used to understand prevalence rates, inform resource allocation, and identify those at risk of negligence or other adverse events for intellectual disability. Changes to engagement with community and stakeholders could play an essential role in the sustainability of the IDEA system. Additional variables or enhanced surveillance for functional capacity could also strengthen the system and provide important information for people living with ID and their families.

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Presentation - 2018 International Population Data Linkage Network

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Lay summary

The evaluation of The Intellectual Disability Exploring Answers (IDEA)

surveillance system

INTELLECTUAL DISABILITY AND THE IDEA SYSTEM

People living with an intellectual disability have impaired thought processes, learning, communication, and remembering. They are a vulnerable group who are at risk of maltreatment as children, have more co-morbidities and mental health problems than people without an intellectual disability. The IDEA system is a unique resource that collects data on the number of people living with a severe intellectual disability in Western Australia.

WHY EVALUATE THE IDEA SYSTEM?

The new National Disability Insurance Scheme will help families and people living with an intellectual disability. However, data will now be collected by the Australian

Government which means that data on intellectual disability will be missing in State Government data collections.

We wanted to know what the current strengths and limitations of the IDEA surveillance system. This way we could help stakeholders and data custodians understand how the system has been used and how important it is to maintain.

WHAT WE DID?

We interviewed stakeholders and looked at the data to determine whether the system was working well. We looked at eight different ‘attributes’ of the system (see below) to

136 see if the system was working well.

IDEA ACHIEVEMENTS

 There were journal publications, annual reports, stakeholder reports, reports for consumers or the public, policy briefs, government and minister reports,

newsletters, book chapters and conferences abstracts.

 There have been over 40 journal publications with approximately 740 citations and 70 conference presentations between 2004-2017 that have used IDEA surveillance data.

 IDEA data have been widely used in the international literature including the international estimates of years lived with disabilities published in the high quality journal Lancet 2012.

 In total, the dataset was pretty complete with 0.7% of cases (81/10674) with ID were not identified in the IDEA system when compared to the WARDA-CP system.

IDEA IMPROVEMENTS

Data from the IDEA system has resulted in

 Develop communication and translation strategies to promote outcomes from IDEA data

•How important is the collection of ID Usefulness

•Ease of understanding data processes Simplicity

•Ability of the system to adapt to changing needs Flexibility

•Is the data complete? Data quality

•The willingness of providers to participate in the IDEA system processes Acceptability

•Is the data generalisable to the wider population Representativeness

•Speed of which data is provided at all stages Timeliness

•Whether resourcing is sufficient Stability

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 Increase engagement with community and relevant stakeholders to promote awareness of current research.

 Use stakeholders and community organisations to generate priority setting for future research

WHAT THIS MEANS?

The IDEA management team believe that discussion and engagement with the IDEA advisory group on how we can bridge the gap between Australian and Western Australian data collection is necessary.

Engagement between IDEA management team, stakeholders and community organisations is fundamental to the future of the IDEA system. Advocating for the continuation of the IDEA system can have real world impact on the lives of people living with intellectual disability and their families.

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