The realities and expectations of community involvement in COVID-19 research: a Consumer Reference Group perspective.

BACKGROUND: Older adults have been disproportionately impacted by the COVID-19 pandemic. COVID-19 restrictions such as stay at home orders and physical distancing measures have been implemented to reduce older adults' risk of infection, however, such measures can have negative effects on older adults' mental health and social wellbeing. In 2020, the research team received funding as part of an Australian COVID-19 research grants program to investigate how services can better meet the mental health and social support needs of older adults during COVID-19. A Consumer Reference Group (CRG) was established to provide a community perspective on all research activities. MAIN BODY: The CRG comprised of eight older adults aged 65 years and older living in Western Australia. Two members of the CRG were involved in the initial grant proposal, and one member worked for a not-for-profit organisation that provides support and advocacy for older adults. The CRGs role was to provide consumer and community perspectives on the research design, advise on study materials, facilitate links between consumers, the community, and researchers, and advocate on behalf of consumers and the community. The CRG was encouraged to reflect on the research project, their contributions, and the outcomes obtained. In this commentary, we document the CRGs contributions to the project, and record their reflections, including what went well, what were some challenges, the realities of conducting research during COVID-19, and lessons learnt. CONCLUSION: The CRG were active participants in the research process. They shared their perspectives and made important contributions to the project. Through collaboration with the CRG, we were able to reach four key messages, underpinned by consumers lived experiences, that were used to co-develop knowledge translation products. These were disseminated to service providers and older adults.

Since the start of the COVID-19 pandemic, health and social measures have been introduced to reduce the spread of the virus, including lockdowns, physical distancing, and mask mandates. Older adults (aged 60 years and older) are considered particularly vulnerable to COVID-19 and have therefore faced some of the greatest restrictions to reduce their risk of infection. These restrictions can have a negative effect on older adults social and emotional wellbeing. In 2020 the research team received funding to investigate how services could better meet the mental health and social support needs of older Australians during the pandemic. To enable a community perspective on all research activities, a Consumer Reference Group (CRG) of eight older adults living in Western Australia was established. Two of the eight CRG members were involved in the initial grant proposal. The CRG's role was to share their thoughts on the research design, study materials, and to provide links to and advocate for consumers and the community. This commentary reports reflections from the CRC on what went well, what some of the challenges were, the realities of conducting this research during COVID-19, and what lessons were learnt. Through collaboration with the CRG key messages for the research project were reached and used to inform infographics, which were then disseminated to inform service delivery providers and older adults of the research outcomes.

Consumer involvement in emergency medicine research: Lessons from engaging sepsis survivors.

Collaboration with consumers is an emerging focus for medical researchers worldwide. Public involvement is increasingly encouraged, and in some cases stipulated by funding bodies, in order to secure financial support. While consumer involvement could be viewed as another hurdle in the funding application process, it can add immense value to research outcomes. However, given the diverse and transient nature of our consumer group, how can we develop meaningful public engagement in emergency medicine research?

Long-term use and cost-effectiveness of secondary prevention drugs for heart disease in Western Australian seniors (WAMACH): a study protocol.

INTRODUCTION: Secondary prevention drugs for cardiac disease have been demonstrated by clinical trials to be effective in reducing future cardiovascular and mortality events (WAMACH is the Western Australian Medication Adherence and Costs in Heart disease study). Hence, most countries have adopted health policies and guidelines for the use of these drugs, and included them in government subsidised drug lists to encourage their use. However, suboptimal prescribing and non-adherence to these drugs remains a universal problem. Our study will investigate trends in dispensing patterns of drugs for secondary prevention of cardiovascular events and will also identify factors influencing these patterns. It will also assess the clinical and economic consequences of non-adherence and the cost-effectiveness of using these drugs. METHODS AND ANALYSIS: This population-based cohort study will use longitudinal data on almost 40,000 people aged 65 years or older who were hospitalised in Western Australia between 2003 and 2008 for coronary heart disease, heart failure or atrial fibrillation. Linking of several State and Federal government administrative data sets will provide person-based information on drugs dispensed precardiac and postcardiac event, reasons for hospital admission, emergency department visits, mortality and medical visits. Dispensed drug trends will be described, drug adherence measured and their association with future all-cause/cardiovascular events will be estimated. The cost-effectiveness of these long-term therapies for cardiac disease and the impact of adherence will be evaluated. ETHICS AND DISSEMINATION: Human Research Ethics Committee (HREC) approvals have been obtained from the Department of Health (Western Australian #2011/62 and Federal) and the University of Western Australia (RA/4/1/1130), in addition to HREC approvals from all participating hospitals. Findings will be published in peer-reviewed medical journals and presented at local, national and international conferences. Results will also be disseminated to consumer groups.