From ‘publish or perish’ to ‘publish with purpose’: perspectives from young adults with lived and living experience on transforming academic publishing in patient-oriented research

 Abstract

This commentary article critically assesses the inclusion and recognition of young adults with lived and living experiences (YALLE) in academic publishing. Stemming from our involvement in a health research study, this analysis interrogates the disparity between the stated importance of YALLE contributions in health research and their actual recognition, specifically in academic publications, which serve as the principal “currency” in research. This tokenism limits the potential for their unique insights to substantially enrich the discourse and dissemination of knowledge. Set against a backdrop of systemic biases and structural barriers, this discussion underscores the persistent minoritization of YALLE, despite increasing nominal recognition within academic and health research communities.

The commentary begins by placing the engagement of young adults in health research within its current context, showing that this inclusion often remains superficial, serving more as a symbolic gesture toward inclusivity rather than fostering genuine participatory research. It critiques the implicit biases within institutional frameworks that continue to shape research culture detrimentally, thus stifling the transformative potential of research led and partnered by young adults. The core of the narrative addresses the complex challenges faced by YALLE, including discrimination, underrecognition, and inadequate participatory roles in research processes. These issues are magnified by the prevalent “publish or perish” culture in academia, which prioritizes the quantity of scholarly output over the quality and inclusivity of research contributions.

The commentary advocates for a crucial shift in academic publishing to genuinely appreciate and integrate the contributions of young adults. We call for a transition from a “publish or perish” model to a “publish with purpose” approach, which necessitates rethinking what is considered valuable knowledge and who is acknowledged as its creators. This shift aims to cultivate an academic culture where knowledge is treated as a communal resource, and publications are used as tools to advance societal understanding and progress.

Keywords: Patient-Oriented Research, Young Adults, Youth Engagement, Mental Health Research, Participatory Research, Academic Publishing

The measure of meaning: redefining success in patient-oriented research

Abstract 

Keywords: Engaged Scholarship, Evaluation, Measurement, Participatory Research, Patient-Oriented Research

Primus Inter PARES: First among equals—practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES

Abstract

This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures.

The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them.

This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.

Keywords: Patient Research Partners, Patient-Oriented Research, Canada, Young Adults, Mental Health, Equality, Trauma-Informed, Reciprocity, Meaningful Engagement, Compensation