Consumer engagement—Beyond the usual approaches

We have become familiar with environmental and climate change advocacy involving consumer participation and recently there have been comparable advances in this field in health care that merit reflection. In this Commentary, I highlight some of these developments in Australia that can be considered for potential application in the Asia-Pacific and beyond. Recently the Australian Government budgeted for investment of $267 million in a national targeted lung cancer screening program funded by increasing the tobacco excise 5% per annum for the next three years. The screening program is the culmination of advocacy by the Lung Foundation Australia (LFA) and other organizations that has built on decades of work by health care professionals (HCPs). Working together with HCPs and patients was critical in using both evidence and practice to support this process. Placing patients with lung cancer at the centre of an extensive health promotion and government relations campaign was the missing ingredient that ultimately may have persuaded the government of the day to invest in the first new screening program in 20 years in Australia. The voices of patients won the day because they introduced a human face to lung cancer and helped to identify a solution to funding the program; an increase in tobacco excise. Many HCPs and researchers are hamstrung within individual health systems and bureaucracies to advocate for new or additional resources, treatments or policies that improve the quality of life for their patients. This is where harnessing the energy of the patient community to activate and amplifying our collective voices for change is vital in lung health. Many HCPs and researchers comprehend the value of meaningful partnerships and the value of consumer engagement, particularly in research proposals. However, this is still often a neglected aspect of many advocacy programs and research applications. Shared decision-making with patients is something HCPs do every day in the clinic but it is often not implemented as a part of research or patient advocacy. It is important to seek out opportunities. For example, COVID-19 gave the respiratory community a once in a generation opportunity to engage the community and amplify the lived experience of both patients and HCPs. It was a chance for decision-makers to appreciate the need for investment in lung health. During the COVID-19 pandemic, LFA fundraised $17 million towards a $50 million ‘Hope in Every Breath’ Research Fund. A consumer engagement strategy was used as the centrepiece of organizational reform and community trust and investment in the organization has grown markedly. Shared advocacy by health care providers and organizations such as LFA has increased investment in lung disease research. The two most recent successful funding rounds of national Australian research future fund (MRFF) to support the Chronic Respiratory program ($45 million AUD) highlight how civil society and health promotion charities can be effective advocates on behalf of both HCPs and patients. Working together as consumers and health promotion charities helped to increase investment and persuaded government to do more. It would surprise many to know that those in government did not know that total burden of lung disease in Australia is approximately 11%, yet research investment has not risen above 2.5% for over a decade. The active engagement of people with lived experience in research project design and implementation is increasingly the defining factor in grants success. Many outstanding research ideas fail because of a lack of time, thought and funding that is invested to meaningfully integrate consumers within the project. The LFA receives many requests to support funding applications across a range of chronic and rare lung diseases. Often these requests are ‘tokenistic’ rather than integrated attempts to include consumers in research indicating that many investigators still fail to appreciate the value of this approach. Consumers can be and should be considered as Investigators with health promotion charities able to source and train patient or consumer advocates to participate as Associates and to be part of consumer panels. Shared workshops can help to develop concepts and priorities that tally with lived experience. For projects that engage specific patient groups the additional criteria of self-determination and cultural safety and sensitivity apply including: In terms of best practice, I recommend the article ‘Top 10 research priorities for people living with pulmonary fibrosis, their caregivers, healthcare professionals and researchers’1 as an outstanding example of inclusive, meaningful end-to-end consumer engagement. Active engagement of consumers significantly contributed to the recently announced grant funding success. In conclusion, health promotion charities can help to engage consumers to partner with and support HCPs and research plans. Working together we can achieve better outcomes for lung health globally. None declared.