Lived Experience, Research Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline

Jones, Nev; Atterbury, Kendall; Byrne, Louise; Carras, Michelle Colder; Brown, Marie; Phalen, Peter

doi:10.1176/appi.ps.202000468

Cited by 60 publications

(60 citation statements)

References 9 publications

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“…Researchers may even suppress or withhold information about their own drug use in order to protect their professional reputation and employment status from drug-related stigma. Therefore, to change the landscape of drug use research, we argue it is the responsibility of researchers to enact change by creating employment opportunities for PWUD in which their expertise is valued and respected and where they are seen as equals with their colleagues [9].…”

Section: Research As a Career Path For Pwudmentioning

confidence: 99%

Research led by people who use drugs: centering the expertise of lived experience

Salazar¹,

Vincent²,

Figgatt

et al. 2021

Subst Abuse Treat Prev Policy

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Background Research collaborations between people who use drugs (PWUD) and researchers are largely underutilized, despite the long history of successful, community-led harm reduction interventions and growing health disparities experienced by PWUD. PWUD play a critical role in identifying emerging issues in the drug market, as well as associated health behaviors and outcomes. As such, PWUD are well positioned to meaningfully participate in all aspects of the research process, including population of research questions, conceptualization of study design, and contextualization of findings. Main body We argue PWUD embody unparalleled and current insight to drug use behaviors, including understanding of novel synthetic drug bodies and the dynamics at play in the drug market; they also hold intimate and trusting relationships with other PWUD. This perfectly situates PWUD to collaborate with researchers in investigation of drug use behaviors and development of harm reduction interventions. While PWUD have a history of mistrust with the medical community, community-led harm reduction organizations have earned their trust and are uniquely poised to facilitate research projects. We offer the North Carolina Survivors Union as one such example, having successfully conducted a number of projects with reputable research institutions. We also detail the fallacy of meaningful engagement posed by traditional mechanisms of capturing community voice. As a counter, we detail the framework developed and implemented by the union in hopes it may serve as guidance for other community-led organizations. We also situate research as a mechanism to diversify the job opportunities available to PWUD and offer a real-time example of the integration of these principles into public policy and direct service provision. Conclusion In order to effectively mitigate the risks posed by the fluid and volatile drug market, research collaborations must empower PWUD to play meaningful roles in the entirety of the research process. Historically, the most effective harm reduction interventions have been born of the innovation and heart possessed by PWUD; during the current overdose crisis, there is no reason to believe they will not continue to be.

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Section: Research As a Career Path For Pwudmentioning

confidence: 99%

Research led by people who use drugs: centering the expertise of lived experience

Salazar¹,

Vincent²,

Figgatt

et al. 2021

Subst Abuse Treat Prev Policy

View full text Add to dashboard Cite

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“…Examining chronic pain from the perspective of the Neuromatrix Pain Theory ( 9 ), Pain Communication Theory ( 15 ), Cultural Somatization Theory ( 87 ), and person-centered action-research in chronic pain ( 23 , 32 , 37 ), we asked whether and how ICTs can improve research that can integrate these theories. We adapted Bateson's cybernetic approach to studying mind-body processes in ecosocial context.…”

Section: Discussionmentioning

confidence: 99%

“…We brought together an interdisciplinary team of clinicians, social scientists, bioethicists, designers, and computer scientists, with support from an intersectoral funding opportunity in the Province of Quebec (Canada), to develop an innovative ICT framework for play-oriented pain research. We held a 2-day public workshop in October 2019, bringing together research team members, clinicians, and individuals with lived experience of chronic pain ( 86 , 87 ). The workshop was held at Concordia University's 4TH SPACE, an open gallery designed to showcase research and seek engagement from the public who were invited with the following message: “ We are scientists, artists, therapists.…”

Section: Introductionmentioning

confidence: 99%

Play the Pain: A Digital Strategy for Play-Oriented Research and Action

et al. 2021

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The value of understanding patients' illness experience and social contexts for advancing medicine and clinical care is widely acknowledged. However, methodologies for rigorous and inclusive data gathering and integrative analysis of biomedical, cultural, and social factors are limited. In this paper, we propose a digital strategy for large-scale qualitative health research, using play (as a state of being, a communication mode or context, and a set of imaginative, expressive, and game-like activities) as a research method for recursive learning and action planning. Our proposal builds on Gregory Bateson's cybernetic approach to knowledge production. Using chronic pain as an example, we show how pragmatic, structural and cultural constraints that define the relationship of patients to the healthcare system can give rise to conflicted messaging that impedes inclusive health research. We then review existing literature to illustrate how different types of play including games, chatbots, virtual worlds, and creative art making can contribute to research in chronic pain. Inspired by Frederick Steier's application of Bateson's theory to designing a science museum, we propose DiSPORA (Digital Strategy for Play-Oriented Research and Action), a virtual citizen science laboratory which provides a framework for delivering health information, tools for play-based experimentation, and data collection capacity, but is flexible in allowing participants to choose the mode and the extent of their interaction. Combined with other data management platforms used in epidemiological studies of neuropsychiatric illness, DiSPORA offers a tool for large-scale qualitative research, digital phenotyping, and advancing personalized medicine.

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“…understanding perceptions of SRR among those in the field would facilitate efforts to improve acceptance and mentorship of people who engage in SRR (Victor et al, under review a). In these respects, studying SRR provides an important window into the profession's values, interests, and identities (including lived experience of mental illness) (Jones et al, 2021;Neblett, 2019).…”

Section: Stigmatizing Our Own: Self-relevant Research Is Common But Frowned Upon In Clinical Counseling and School Psychologymentioning

confidence: 99%

Stigmatizing our own: Self-relevant research (Me-search) is common but frowned upon in clinical psychological science

Devendorf¹,

Victor²,

Rottenberg³

et al. 2021

Preprint

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Researchers often have personal experiences that motivate engagement with a research topic. We performed the first systematic investigation of self-relevant research (SRR; “me-search”) among psychologists. The prevalence of SRR and attitudes towards SRRers were examined in a representative North American sample (N = 1,778) of faculty, graduate students, and others affiliated with accredited doctoral programs in clinical, counseling, and school psychology. Over half of participants had engaged in SRR. When judging experimentally manipulated vignettes, those who did not engage in SRR made more stigmatizing judgements of SRR and SRR disclosure than those who engaged in SRR. Psychologists and trainees had more negative attitudes towards SRR on mental health topics (suicide, depression, schizophrenia) than physical health topics (cancer). We discuss the implications of negative evaluations of SRR and mental illness on the health of applied psychology.

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Lived Experience, Research Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline

Cited by 60 publications

References 9 publications

Research led by people who use drugs: centering the expertise of lived experience

Research led by people who use drugs: centering the expertise of lived experience

Play the Pain: A Digital Strategy for Play-Oriented Research and Action

Stigmatizing our own: Self-relevant research (Me-search) is common but frowned upon in clinical psychological science

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