Developmental Pathways Project

The Developmental Pathways Project has adopted a range of involvement methods and activities into its research projects which are listed in chronological order below.

Background

The Developmental Pathways Project is a landmark project taking a multidisciplinary and holistic approach to investigate the pathways to health and wellbeing, education, disability, child abuse and neglect, and juvenile delinquency outcomes among Western Australian children and youth.

The project has established the process of linking together de-identified longitudinal (long-term) population-based data collected and stored by a large number of WA government departments and the Telethon Kids Institute, to create a cost-effective research and policy planning/evaluation resource.

Some of the projects conducted by the Developmental Pathways Project include?

  • The use of cross-jurisdictional population data to investigate health indicators of child maltreatment
  • The impact of monetary incentives on general fertility rates in Western Australia
  • A whole-of-population study of the prevalence and patterns of criminal offending in people with schizophrenia and other mental illness
  • Contact with the juvenile justice system in children treated with stimulant medication for attention deficit hyperactivity disorder: a population study
  • Dimensions of delinquency: exploring group differences in the prevalence and frequency of offending
  • Social and racial inequalities in birth rates and infant outcomes in Western Australia
  • Developmental pathways to childhood literacy and numeracy: the role of early health
  • Towards prevention – a population health approach to child abuse and neglect: health indicators and the identification of antecedent causal pathways

2005 - 2006: Proposal for community involvement

  • The Consumer Advocate and the Project Manager for the first Developmental Pathways Project met with representatives from the partner agencies to propose a range of ideas for involving the community in the research
  • The proposal recognised the concerns of local and national community groups about research using linked data
  • There was limited uptake of the proposal and participation activities were limited to some projects having community representatives and some ad-hoc consultations
  • Two small workshops and meetings were held with community members and researchers.

2007 - 2009: Training for consumers and community members

Training workshops were held and they included presentations on the function of the Data Linkage Unit and the WA data collections. General information was also presented about the Developmental Pathways Project and the various individual research projects being conducted.

2009: Community conversation

A community conversation was held with the Program Manager, researchers, Consumer and Community Advisory Council members and other community members who had interest and involvement in the individual projects. The meetings discussed the new grant applications and suggestions from the community members included:

  • Inclusion of housing data for a more complete picture of what affects children’s outcomes
  • Need to implement the results of the research to initiate action and changes to practice
  • Better dissemination of research results to the community
  • Establishment of a reference group with community members representing different areas of the research

2011: Community forums and establishing the Community Reference Group

Two community forums were held to seek input into the development of the consumer and community involvement initiatives within the Developmental Pathways Project.

First forum

Attendees raised the following key points:

  • A reference group was the preferred model. This group should be a small group whose members can interact with relevant community groups when a wider perspective is required
  • A further meeting was requested to provide more information about the Developmental Pathways Project and the process of data linkage 

Second forum

Presentations were made about the Developmental Pathways Project and the data linkage process. A proposed outline of the community reference group was also presented and people were given expressions of interest to complete if they wanted to participate in the reference group

Establishing the Community Reference Group

The Community Reference Group was established with 14 community members with an interest in, or connection to, one of the 11 partner agencies. The purpose of the Community Reference Group is to provide a community perspective on the research activities associated with the Developmental Pathways Project.

2012: Community reference group

The Community Reference Group Terms of Reference were finalised. The Reference Group discussed the possibility of the Department of Planning and Infrastructure as a partner agency and requested it be considered by the Project Advisory Panel.

2014: Community expo

The Developmental Pathways Project joined with another large program of research at the Institute to hold the inaugural Community Research Expo (Expo) in 2014. The purpose of the Expo was to raise awareness of the research and projects being undertaken under the umbrella of the Program Grant and Developmental Pathways Project. It was an opportunity for consumers and community members to learn about the research, talk with the researchers and find opportunities to be involved.

Researcher’s comment on involving consumers and community members

"While this has been a long process, it has been a very useful one. We have established the ‘community voice’ in our work from the very outset of the second phase of this large program, and it has guided the direction of our research significantly. The value of having community perspectives on our work is immeasurable, and will only be truly seen once our work has been completed and disseminated. We look forward to a long and fruitful relationship with our reference group."

Dr Rebecca Glauert, Program Manager 2012