Reimagining consumer involvement: Resilient system indicators in the COVID‐19 pandemic response in New South Wales, Australia

Abstract

Background: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. Methods:In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. Results:The pause in consumer engagement to support health service decisionmaking in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. Conclusion:The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system.

Editorial: Where to from here: Advancing patient and public involvement in health technology assessment (HTA) following the COVID-19 pandemic

“…Patient advocates, patient partners and leaders however continued to be active throughout the pandemic. An example is where Australian consumer representatives, including from rural and regional areas and diverse cultural backgrounds, organised themselves to work with communities to identify inadequate or inappropriate aspects of patient care during the pandemic ( 2 ). They filled an important information and communication void and were also able to mobilize support from communities and politicians to address specific healthcare issues in local areas.…”

Invisible no more: unpaid care giving in the shadow of covid-19

“…In situations where families would attend to the physical and emotional needs of patients, these duties were now left to overstretched staff. Consumer representatives in Australia described how the lack of family presence meant that patient information was less comprehensive, discharge home was less informed and coordinated, and patients experienced poorer mental and emotional health 4…”

“…Consumer partners who engage in health organisational design and governance were also excluded from decision making in response to covid-19. This resulted in pandemic decisions being made without consumer stakeholders to advocate for patients and families 4…”

Investigating Resilience in Healthcare: Easier Said Than Done? A Response to the Recent Commentaries

“… 5 For example, ecological systems must be capable of adapting, evolving, and transforming to face emergent challenges. Ecologists have developed concepts (eg, panarchy 16 , 17 ) that facilitate studying how these systems fulfill these requirements. These concepts have received little attention in healthcare and could represent an untapped resource to enhance our understanding of the systems in which we work.…”