Occupational Lung Disease Priority Setting Partnership

To assist with the identification of top research priorities in occupational lung disease, Lung Foundation Australia are using a Priority Setting Partnership framework adapted from the James Lind Alliance. This widely used, consumer centred framework specifically promotes the inclusion of health consumers and health professionals in generating unanswered research questions and agreeing upon the top priorities for future research. Lung Foundation Australia has completed similar work with the Centre for Research Excellence in Pulmonary Fibrosis, which resulted in a peer-reviewed publication. This publication has been cited internationally and can be used by institutions and governments globally as part of establishing an informed research agenda.

Our workplan, approved by the Department of Health and Aged Care, focuses on silicosis in year one, with a phased approach for other occupational lung diseases in years two and three. The OLD Research Network will be integral in deciding the focus of Priority Setting Partnerships in later years.

The Occupational Lung Disease (OLD) Research Network will be a collaborative network of Australian researchers, multidisciplinary health professionals, consumers impacted by occupational lung disease, including family members and caregivers, and other key stakeholders.

The OLD Research Network will provide an opportunity for members to build connections with new colleagues, identify novel research opportunities, grow their knowledge and understanding of new and existing research, and establish collaborative research projects that will enhance the quality and impact of Australian occupational lung disease research. Members will also work together to agree upon the top priorities for future research and funding in occupational lung disease to ensure Australian research is better coordinated.

An OLD Network Steering Committee (ONSC) will be created to assist in establishing the wider OLD Research Network and will provide important expert-level guidance and decision making around:

• Defining the scope and purpose of the OLD Research Network and associated Research Forums
• Reviewing the Project Protocol to ensure the scientific rigour and potential impact of the proposed activities, including the Priority Setting Partnerships
• Participating in the Priority Setting Partnership activities to help agree upon the top priorities for future research funding and setting a more targeted and coordinated national research agenda
• Dissemination of the agreed upon research priorities for silicosis and other occupational lung diseases.

The ONSC will include a multidisciplinary array of Australian health professionals and academic researchers, such as Respiratory Physicians, Occupational Hygienists, Physiotherapists, Occupational Therapists, Epidemiologists, and Workplace Health and Safety Representatives.

The aim of the occupational lung disease Priority Setting Partnerships is to identify the top priorities for future research in occupational lung disease as agreed upon by the OLD Research Network. It is anticipated that findings will be used to drive a national research agenda and identify key areas for future research funding aimed at improving the prevention, detection, management, treatment, and survivorship of occupational lung disease.

An annual report to the Department of Health and Aged Care on the finalised priorities is the primary output of the Priority Setting Partnerships. It is intended that these reports will be used by the Department and other research funding bodies to inform funding priorities and grants.

A key recommendation from the National Dust Disease Taskforce’s Final Report to the Minister for Health and Aged Care was to build a strategic national approach to research. It is clear there remain significant gaps in our understanding of the prevention, detection, management, treatment, quality of life, and survivorship of occupational lung disease in Australia. Therefore, research needs to be more coordinated and targeted around priorities grounded in the diverse lived experience of people impacted by occupational lung disease.

The creation of an OLD Research Network will enhance the capability of, and collaboration between, Australian researchers working in occupational lung health. The resulting priorities, as agreed upon by consumers and other experts, will be disseminated to government and funding bodies. It is expected that this will result in a more coordinated and strategic approach to occupational lung disease research in Australia and will help ensure that occupational lung disease becomes better understood and prevented and that those impacted by occupational lung disease receive access to more effective evidence-based care.

Due to the resurgence of silicosis cases, and Lung Foundation Australia’s role in the development of the National Silicosis Prevention Strategy 2023-2028 and accompanying National Action Plan, the focus of the 2023 Priority Setting Partnership and associated Research Forums will be to agree upon priorities for coordinating future research into silicosis. The National Silicosis Prevention Strategy 2023-2028 and accompanying National Action Plan make preliminary recommendations to government following extensive consultation with a diverse range of stakeholders who strongly support the need for future research prioritisation around key evidence gaps and the development of an internationally relevant, coordinated research strategy.

Members of the OLD Research Network will decide which occupational lung disease should be the focus of separate Priority Setting Partnerships and Research Forums in years two (2024) and three (2025).

Biannual Research Forums will be held each year, beginning in 2023. The Research Forums will be the mechanism through which the OLD Research Network, including the OLD Network Steering Committee, can come together to collaborate, share information, and engage in priority setting activities. The first face-to-face Research Forum was held in October 2023 followed by a briefer virtual forum in November 2023. Subsequent Research Forums will be held in 2024 and 2025. The Research Forums may also be used to forecast funding opportunities and collaborate on new projects, as presenting opportunities for early career researchers, or other reasons as decided by the OLD Network Steering Committee. OLD Research Network members, as participants of the Research Forums, may also have the opportunity to contribute to the development of a National Rapid Response Protocol and other activities.

Lung Foundation Australia has over 30 years of experience in partnering with stakeholders to deliver high-quality research, including basic science, drug discovery, clinical trials, disease registries, consumer priority setting and engagement, as well as funding early and mid-career research and innovation grants. Lung Foundation Australia is also the health peak advisory body to the Department of Health and Aged Care. The Priority Setting Partnership work is part of funding received by Lung Foundation Australia from the Department of Health and Aged Care in December 2022 to strengthen national efforts directed at the prevention, support, research, and response to dust-related diseases.