If not now, when? COVID-19, lived experience, and a moment for real change

Abstract

In a Position Paper published in The Lancet Psychiatry, Carmen Moreno and colleagues 1 recommended bolder language and framing with respect to the meaningful involvement of service users in mental health planning, policy, and research in the wake of COVID-19. It is always gratifying to hear enthusiasm for goals the user and survivor research movement has long fought for. We were similarly gratified to read an Editorial in The Lancet Psychiatry arguing for pressure from service users to more actively shift societal discourse. 2 And yet, as welcome as these statements are, we worry that the primary problem we are all up against is not a paucity of articulated support for service-user involvement but rather the gap between rhetoric and reality. Our collective experience suggests that both before, and now many months into, the COVID-19 pandemic, meaningful service-user involvement remains unevenly implemented in some places, and non-existent in others. In some regions, involvement could be reduced from pre-COVID-19 levels, whereas in others, attestations to the importance of inclusion might have long been unaccompanied by concrete action. The same sentiment—anger and frustration about decades of inaction—has also been at the forefront of the Extinction Rebellion, March for our Lives, and Black Lives Matter movements. At a specific point, one feels the need to say “enough talk”. And if there was ever a moment when we, as a field, might take deeper stock of where we really want to head, it is arguably now. Involvement efforts are too often accompanied by empty promises, insufficient funding or commitment, and superficial gestures (eg, membership on advisory boards), with no real power to set agendas, influence decision making, or bring about structural change.3, 4, 5 Concretely then, what actions might be taken at this pivotal cultural moment? As activists across multiple under-represented social groups have long argued, leadership roles and power over decision making are fundamental.4, 5 From a systems perspective, this situation means addressing barriers specific to both academic training and advancement and research funding. Beginning with addressing barriers in academia, explicit proactive support for students and investigators with lived experience must be provided across the training pipeline, from undergraduate studies through to independence as mid-career investigators. Ideally, such support would be pursued with the primary goal of supporting junior scholars to ultimately obtain their own grants as primary investigators, particularly in fields in which extramural funding is sine qua non for promotion and advancement.6, 7 In supporting such trajectories, senior researchers must take care to ensure that service-user trainees and researchers, when included in studies and grants, are not there primarily to check a box or shore-up involvement plans, but to substantively shape research activities and, above all, advance their own careers and research agendas. Attention to diversity within this pipeline is also important, certainly of race, ethnicity, gender, sexual orientation, and class, but also with respect to level of disability and intersectional experiences of homelessness, incarceration, discrimination, addiction, and poverty. 8 Research funders, in turn, must implement safeguards against discrimination, communicate and enforce robust expectations for service-user involvement and leadership in research proposals, and ensure that established bodies of research do not become barriers to authentic community-led innovation.4, 9 Too often, funding processes re-inscribe existing hierarchies and established interventions by rewarding proposals that build on, and hew to, existing published work. High-risk high-reward funding streams are typically present in the basic and translational sciences or new research areas such as digital health, with such language rarely used to refer to or fund user-led innovations. To achieve deeper change, funders must be open to new ideas and new directions, guided by those on the receiving end of services. Is the above pipeline merely a pipe dream? Our belief is that senior researchers, large research centres, and training programmes could readily take the steps described above, including substantially greater hiring, mentoring, and support of under-represented students and researchers with lived experience. Were it a priority, research funding bodies could—with relatively minor modifications to programme announcements—directly support meaningful involvement and leadership. Failure to do the above is neither a fault of structures over which the field has no control nor stigma among some other group, but it is an individual choice on the part of those in positions of power to remain stagnant and perpetuate processes and lines of research that marginalise the experiences and knowledge of the very populations this research aims to serve. Rather than bold language, we call for bold action. © 2020 Wilsan U:Unsplash 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.