NATIONAL ASTHMA RESEARCH AGENDA:

WHAT QUESTIONS DO END-USERS WANT ANSWERED?

The NAS identified research as a key enabler of progress in Australia but emphasised there is a lack of overarching strategic direction.

Thus, the primary focus was to develop a research agenda to understand and support investment in the areas that are most important to end users of asthma research. End users of asthma research include people with asthma, carers, healthcare professionals and policy makers.

NATIONAL ASTHMA RESEARCH AGENDA: WHAT QUESTIONS DO END-USERS WANT ANSWERED?

In Australia, one in nine people are living with asthma, and it has a major impact on individuals, their carers and the health system.2,3 Asthma is responsible for more than 30,000 hospitalizations2 and approximately 400 deaths each year in Australia.2

The 2018 National Asthma Strategy (NAS) highlighted the need for a National Asthma Research Agenda to help “focus, coordinate and translate quality health research into policy and practice.”1 The NAS identified research as a key enabler of progress in Australia but emphasised there is a lack of overarching strategic direction.1

The National Asthma Research Agenda project was established, which aimed to adopt a model developed and implemented internationally, known as the James Lind Alliance (JLA) priority setting partnership model.4 This model embeds the research ‘end-user’ at its core and in doing so arrives at priorities most important to them,

1 https://asthma.org.au/wp-content/uploads/About_Us/NationalAsthma-Strategy-2018.pdf

2 Australian Bureau of Statistics. A National Health Survey 2020–2021: asthma. Canberra:ABS2022. Available from https:// www.abs.gov.au/statistics/health/health-conditions-and-risks/ asthma/2020-21

3 Australian Institute of Health and Welfare. Australian Burden of Disease Study: impact and causes of illness and death in Australia 2018. Australian Burden of Disease Study Series no. 23. Cat. no. BOD 29. Canberra: AIHW; 2021.

4 https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps. htm independent of the views, preferences and influences of the research sector. Asthma Australia proposes this agenda to be the focus of asthma research investment, collaboration, and translation across Australia.

“We want to know what really matters to people who live with asthma, who care for someone with asthma, or who treat people with asthma”, National Asthma Research Agenda executive committee.

SO WHAT DID THIS INVOLVE?

The research priority setting exercise was a partnershipbased process involving end-users at each stage. An online survey was sent to Asthma Australia’s consumer and health professional databases, and shared by peak professional societies and organisations across Australia through email and social media. The survey included demographic questions and two free-text questions:

• What would you like to see answered by research to improve living with asthma on a day-to-day basis?

• Are there any other issues you’d like to see answered by research, in addition to the above?

593 people responded to the survey which included people with asthma or a personal connection to somebody with asthma (91%), and healthcare professionals (HCP) or policy makers (9%).

This outcome was a strength of the survey, which ensured a proportionate representation of HCPs in this process, compared with the ratio of HCPs to people with asthma in Australia.

The results of the survey were thematically analysed, resulting in a shortlist of 18 themes which were then taken to a series of 3 online consensus workshops. These workshops were mostly made up of people with asthma or their carers, from a range of backgrounds, as well as a significant number of HCPs or policy makers (approx. 30%). The purpose of these workshops was to gain consensus on the priority importance of the 18 themes.

The workshops were facilitated by a skilled advisor with experience in using a modified JLA process. She guided the sessions and prioritisation based on an adapted nominal group technique (NGT) approach, which is a wellestablished and well-documented approach to decisionmaking in community-based action research. Each workshop resulted in a prioritised list. These lists were then collated and averaged, resulting in a final ranked priority list which reflected and balanced the weight of priorities between the three groups. This process was completed independently by three members of the research team to confirm each resulted in the same outcomes.

AUSTRALIA’S NATIONAL ASTHMA RESEARCH AGENDA:

Figure 1 The top key research themes as prioritised in the priority setting workshops with the highest frequency research questions within themes.

Our results revealed broad themes reflecting a range of existing challenges faced by people with asthma, their carers and the insights and challenges faced by the people who care for them. Whilst they appear broad and arguably well researched when presented as themes, the questions posed within the themes point to the perseverance of fundamental issues faced by people with asthma and reinforce the evidence-practice gap highlighted in the 2018 National Asthma Strategy.1 Programs of research addressing these priorities have the potential to reduce the burden of asthma on the people with the disease, which is significant.

WHAT DOES THIS MEAN FOR RESEARCHERS?

Asthma Australia are working with partners, collaborators, and the broader stakeholder community to embed this set of priorities front and centre in institutional planning around asthma-related research. People with asthma are waiting for Asthma Australia to join forces with the research sector to deliver a targeted program of research activities that lead to tangible policy and practice outcomes against these priorities.

Author: Anthony Flynn, Senior Manager Research and Evaluation, Asthma Australia.

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