Who is the frail consumer and how do we reach them? Engaging consumers in frailty research

Increasing rates of chronic disease and an ageing population make frailty relevant to everyone. It is important for researchers and health professionals to partner with consumers to achieve better outcomes. Still, it can be challenging to determine who the ‘frail consumer’ is and how to reach them. Coined by the disability community, and adopted by other marginalised groups, ‘nothing about us, without us’ is used to describe the importance of including those impacted by the research in decision-making.1 Founded in ethics and human rights, this sentiment mandates that we should conduct frailty research in the community's interest. Consumer and community involvement (CCI; also known as Patient and Public Involvement) in research has matured considerably, especially across the last decade. Numerous CCI statements and principles offer organisations, researchers and consumers guidance in involving consumers across research cycles, including several specific to older consumers. However, it is unclear how to apply these guidelines to engage people living with frailty. That is because, by definition, people who live with frailty experience a state of increased vulnerability that is associated with adverse health outcomes.2 In frailty research, it is essential to understand the lived experience of consumers and their caregivers to inform research questions, design and dissemination. Frailty is a dynamic continuum from ‘slowing down’ through to ‘very severely frail’ and is associated with ageing.3 However, frailty is a concept that transcends chronological age, with some younger people experiencing accelerated ageing due to chronic disease (e.g., kidney disease4 and severe mental health illness). Consumers impacted by frailty make up a broad constituency; therefore, CCI should aim to recruit across the spectrum of diversity in age and frailty severity. Despite researchers' increasing awareness of the concept of CCI, consumer awareness can be lacking. Consumers are often unaware of CCI opportunities in research. Moreover, many do not want to associate with the term ‘frailty’ due to stigma.4 Overcoming this requires working with the community to develop a shared understanding of frailty and the research process, and a communication plan to invite diverse consumers to become engaged in research. Communicating about frailty has been a recent focus of work by the newly established Australian Frailty Network, with plans to develop guidance for researchers and health professionals on how to communicate with diverse audiences about frailty. Additional strategies may include supporting CCI in research promotion initiatives by researchers in community, and frontline health-care workers with patients. Moving beyond tokenistic attitudes of ‘any consumer is better than no consumer’, we must be discerning in who we recruit for specific frailty research projects. The risk for research areas with broadly relevant areas of lived experience is the commodification of CCI—selecting consumers with any frailty experience, rather than the frailty experience aligned to the research. Engaging people who are moderately to severely frail is often challenging due to their health status (e.g., communication difficulties and cognitive impairment). Despite these challenges in recruitment and engagement, to remain genuine to ‘nothing about us without us’, their perspectives must be included to ensure frailty research is truly consumer informed. Even within the same broadly relevant lived experience area, how can those who are not impacted by the research decide on behalf of those who are? Caregivers of people living with frailty are an important but distinctly different consumer group. Caregivers should not speak for people living with frailty, but their lived experience of caregiving needs to be included when planning and implementing frailty research. CCI in frailty research must be agile and dynamic with increased focus on peer-researchers and place-based engagement. CCI is founded on trust and relationships built over time through sustained regular engagement. Maintaining relationships for extended periods may not be possible with the inevitable increase in frailty and adverse health outcomes over time, precluding people from CCI. Experience in dementia also suggests that those capable of sustained engagement over years are likely not representative of the larger experience, where decline is a hallmark. Many traditional CCI methods are inaccessible to people living with frailty.5 They require, for example, that people sit on steering committees and attend regular meetings with large groups. The way these CCI activities are structured automatically excludes many people living with frailty, who are severely frail, digitally excluded, live in remote areas and/or experience communication or cognitive impairments. Prioritising choice and engaging flexibly to meet them where they are may help to overcome these barriers. Consumers should be offered payment for their time and contribution, with CCI included in all grant and research budgets in line with established guidelines. Whilst consumer motivation to be involved in research is often for ‘the greater good’, asking consumers to volunteer their time can further exclude those who are financially disadvantaged or need to forgo paid or unpaid work or roles to participate in CCI. Implementing dynamic strategies that prioritise choice, peer-researchers and place-based CCI may improve the ability to engage and build trust with people from intersectional backgrounds where it is critical to overcome power imbalances and historical exclusion from research. Not all frail people are the same, and we need to elevate the perspectives of people who are frail and belong to other marginalised groups (e.g., First Nations people, people from culturally and linguistically diverse backgrounds, people living in rural and remote areas or are digitally excluded). Incorporating intersectional perspectives across the research cycle will reduce the chance that consumers will ‘fall through the gaps’ in CCI and research. We need to think differently about how we find consumers. Typically, consumers involved in research are sought through consumer advocacy organisations and networks,5 which can promote participation of people who are at the more ‘robust’ end of the frailty spectrum and those who are highly health and digital literate. Models where researchers go to places where frail people are (e.g., aged care services, community centres, in their homes) will likely yield more representative and authentic CCI. Building and supporting a consumer research workforce may help us to link into new consumer networks and develop new CCI methods better suited to people living with frailty (based on their lived experience with CCI and frailty), allowing us to enter new spaces where we can engage people living with frailty where they are. Consumer motivations for research engagement are often altruistic, so must be supported by a research workforce that welcomes, appreciates and acknowledges their contributions. Being genuinely committed to hearing from, learning from and working in partnership with people living with frailty will ensure our research meets community needs. Researchers need to be ready to be challenged about our perception of ‘the big research’ questions and to truly listen and be ready to adapt our plans in response to consumers, acknowledging that our academic knowledge of frailty is not superior to a person's lived experience with frailty. A change in culture and strong leadership is necessary to create and enable a research workforce that is innovative, flexible and mobile, and that goes outside our academic ivory tower to meet with and be part of the community. Organisations such as Australian Association of Gerontology and the Australian Frailty Network are key to creating opportunities for researchers, health professionals and community to come together to set research priorities and learn from each other. Adopting a ‘nothing about us, without us’ approach to frailty research partnerships can be compared to universal design—if we design CCI and research so that it is benefits people living with frailty, it should benefit all. The authors would like to acknowledge all consumers and people living with frailty that they have had the privilege of working with and learning from. No conflicts of interest declared.

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