Embedding lived experience into mental health academic research organizations: Critical reflections

Background: As part of a growing emphasis on engaging people with lived experience of mental health conditios in mental health research, there are increasing calls to consider and embed lived experience throughout academic research institutes. This extends beyond the engagement of lay patients andalso considers the potential roles of academic researchers with lived experience. When the lived experience of academic researchers is applied to academic work, there is the potential to improve the relevance of the research, while destigmatizing mental illness within academia. However, there are different and often contrasting perspectives on the way a lived experience academic researcher initiative should be implemented. Objectives: This article describes some of the key issues to be considered when planning an initiative that leverages and values the lived experience of academic researchers, including the advantages and disadvantages of each potential approach. Discussion & Recommendations: Institutions are encouraged to reflect on the ways that they might support and value lived experience among academic researchers. In developing any such initiative, institutions are encouraged to be transparent about their objectives and values, undertake a careful planning process, involve researchers with lived experience from the outsetand consistently challenge the stigma experienced by academic researchers with lived experience. Patient or Public Contribution: Multiple authors are academic researchers with lived experience of mental health conditions

Addressing Ethical Challenges Related to Community and Patient Engagement in Health Research

Dans ce résumé post-atelier, nous décrivons trois défis éthiques liés à l’engagement des personnes ayant une expérience vécue en tant que partenaires dans la recherche en santé. Nous partageons les enseignements et les pistes de réflexion tirés de l’atelier organisé dans le cadre de l’atelier et du forum communautaire de la Société canadienne de bioéthique, qui s’est tenu en mai 2023.In this post-workshop summary, we describe three ethical challenges related to engaging people with lived experience as partners in health research. We share learnings and reflective prompts from our workshop delivered as part of the Canadian Bioethics Society Workshop and Community Forum held in May 2023

Unsubstantiated health claims for COVID-19 infections are led by cannabidiol: return of snake oil medicine

Abstract Background The United States Food and Drug Administration (FDA) monitors, inspects, and enforces the promotion of products by companies that claim to mitigate, prevent, treat, diagnose, or cure COVID-19. The introduction of COVID-19-related diagnostics and therapeutics during the pandemic has highlighted the significance of rigorous clinical trials to ensure safety and efficacy of such interventions. The objective of this report is to provide a descriptive review of promotional violations of health products for COVID-19 infection. Methods Warning letters issued by the FDA’s Center for Drug Evaluation and Research were retrieved over an 18 month period (March 6, 2020, to August 30, 2021) to identify promotional violations. FDA violation letters categorized as “Unapproved and Misbranded Products Related to Coronavirus Disease 2019 (COVID-19)” were reviewed. A content analysis was performed for each letter to identify categories for product type, promotional venue, violation type, and country of origin. For cannabidiol-related violations, a content analysis was repeated within its own product category. Results A total of 130 letters were reported. Across all letters, cannabidiol products were the most frequent subject of violation (15/130; 11.5%). Of the cannabidiol letters, all reported the promotion of unapproved products (15/15; 100%), misbranding (15/15; 100%), and/or had claims that lacked scientific substantiation (14/15; 93.3%). All promotional violations were linked to websites (15/15; 100%), along with other mainstream venues: Facebook, Instagram, YouTube, Twitter, LinkedIn, and email. Lastly, the cannabidiol products were described to provide therapeutic benefit to COVID-19, by acting as an anti-viral (5; 33.3%), pro-inflammatory (1; 6.7%), anti-inflammatory (7; 46.7%), immune-booster (5; 40%), immune-suppressor (2; 13.3%), and/or other (2; 13.3%). Conclusion Despite the urgent need for COVID-19 treatments, promotional material by companies must comply with standard regulatory requirements, namely substantiation of claims. As the pandemic persists, the FDA must continue their efforts to monitor, inspect, and enforce violative companies. Cannabidiol-related substances led the spectrum of products with unsubstantiated claims to treat COVID-19 infection. Improving awareness among the public, healthcare providers, and stakeholders highlights the value of drug approval process, while protecting public safety

Going virtual: youth attitudes toward and experiences of virtual mental health and substance use services during the COVID-19 pandemic

Abstract Background During the COVID-19 pandemic, youth mental health and substance use services rapidly moved to virtual modalities to meet social distancing requirements. It is important to understand youth attitudes toward and experience of virtual services. Objective This study examined the attitudes toward and experiences of virtual mental health and substance use services among youth drawn from clinical and non-clinical samples. Method Four hundred nine youth completed a survey including questions about their attitudes toward and experience of virtual services. The survey included quantitative and open-ended questions on virtual care, as well as a mental health and substance use screener. Results The majority of youth with mental health or substance use challenges would be willing to consider individual virtual services, but fewer would consider group virtual services. However, many have not received virtual services. Youth are interested in accessing a wide variety of virtual services and other supportive wellness services. Advantages and disadvantages of virtual services are discussed, including accessibility benefits and technological barriers. Discussion As youth mental health and substance use services have rapidly gone virtual during the COVID-19 pandemic, it is essential that we hear the perspectives of youth to promote service utilization among those in need. Diverse, accessible, technologically stable virtual services are required to meet the needs of different youth, possibly with in-person options for some youth. Future research, engaging youth in the research process, is needed to evaluate the efficacy of virtual services to plan for the sustainability of some virtual service gains beyond the pandemic period

Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities

Abstract Background Engaging people with lived experience of mental health or substance use challenges and family members (PWLE) improves the quality and relevance of the associated research, but it can be challenging to include them meaningfully and authentically in the work. Knowledge mobilization events After reviewing the literature on the science of lived experience engagement, we held two knowledge mobilization events to translate the findings to relevant partners and collect their feedback to guide our future research. A total of 55 people attended, bringing the perspective of people with lived experience, family members, research staff, research trainees, and scientists, as well as attendees holding multiple roles. We presented the scoping review findings, then held discussions to solicit feedback and encourage the sharing of perspectives. Attendee perspectives Through small and large group discussion activities, we found that our scoping review findings resonated with the attendees’ personal experiences with engagement in mental health and substance use research. Among the gaps highlighted in the discussions, the two that were most emphasized were the critical importance of improving diversity in engagement work in mental health and substance use, and the importance of addressing gaps around communication, relationships, rapport, and power dynamics in engagement spaces. Conclusions Diversity, communication, relationships, and power dynamics emerge as key areas of work needed in the near future to advance the science of PWLE engagement in mental health and substance use research. We commit to pursuing the work that is considered of greatest need by a range of partners this research engagement sphere. We call on researchers in this area to continue this line of work, with a focus on the areas of research identified by attendees

GRIPP2 reporting checklist for the engagement of people with lived experience in research.

GRIPP2 reporting checklist for the engagement of people with lived experience in research.</p

Demographic characteristics of study participants.

Demographic characteristics of study participants.</p