People with Lived Experience (PWLE) are individuals who have directly encountered specific conditions or situations, providing them with unique insights and understanding that others without such experience may lack [1]. This includes those who have gone through health challenges, social difficulties, or other significant life circumstances. Often referred to as “experts by experience,” PWLE possess knowledge rooted in their personal journeys rather than relying on second-hand information, education, or media sources (1, 2).

Incorporating lived experiences into research can significantly boost its relevance and impact, particularly in the fields of mental health, where conventional methods have overlooked the unique insights of PWLE (3). PWLE encompass a diverse group of individuals from varying backgrounds, who can inform research in fields involving their relevant experiences, by grounding research questions and findings in real-life experiences, making it more relevant and improving its quality by identifying factors that might otherwise be overlooked (4, 5). For example, PWLE are likely to have experienced situations specific to the phenomena in question, such as the uncertainty involved when pondering one’s own experience, understanding the impact of experiences over time, and embodying difficulties related to stress or other conditions (6). These characteristics can be challenging to understand for individuals and researchers who have not personally experienced the phenomenon, and as a result, they may be overlooked if people with lived experience (PWLE) are not involved in the research.

In recent years, the value of incorporating lived experience into research has become increasingly recognized, particularly in fields such as mental health and substance use (5, 7). For example, The Centre for Addiction and Mental Health in Toronto, Canada has created a useful guideline document for engaging PWLE in substance use research (4), and The National Institute on Drug Abuse in the United States have also committed to incorporating PWLE in its research as evident in its various initiatives and strategic plans (8).

A scoping review by Hawke et al. (9) found that incorporating PWLE in substance use research was seen to enhance various aspects of the research process, including the overall quality of research (such as increased rigor, trustworthiness, and community relevance), specific research activities (such as participant recruitment), and the research environment itself (for example, by shifting power dynamics). Further research by Hawke et al. (4) documented the barriers, facilitators, and best practice guidelines for engaging PWLE. What appears to be lacking in the current literature are effective strategies to reinforce trustworthiness when confronting potential stigma from non-PWLE researchers, as well as a clear outline of the importance of involving PWLE throughout every stage of the research process.

This paper seeks to explore perceptions of the trustworthiness of PWLE in substance use research and offers guidance on how to foster and support this trust. Concerns about trustworthiness and possible biases from non-PWLE researchers and professionals have prompted a closer look at ethical issues associated with PWLE participation, with particular attention to the risks of confirmation bias and undue influence (10, 11). Researchers in general are expected to practice reflexivity and remain mindful of their inherent inclination to prioritize information that aligns with their pre-existing beliefs, which can result in less attention being given to evidence that contradicts those beliefs (12). Indeed, PWLE have been found to maintain respectful and ethical approaches in handling sensitive and private data (5) while maintaining reflexivity throughout all research processes (6).

In addition to navigating concerns about trustworthiness, having to disclose experiences that may have previously resulted in negative consequences while engaging in substance use activities may cause personal distress, stigma, and the possibility of re-traumatization in PWLE (7, 13). Roennfeldt et al. (14) describe “a Catch 22 of needing to be exposed to potential discrimination in order to ultimately shift prejudicial attitudes” (p. 108), as PWLE have indicated their strong drive for reform in mental health care following their diagnosis and experiences of substance use (14).

It is essential to ensure that studies involving PWLE are conducted ethically and with critical attention to power dynamics, as emphasized in conceptual frameworks such as critical race and feminist methodologies (6, 15). Consistent with these methodologies, PWLE have been found to oppose marginalization and oppression (14), and many PWLE have been drawn towards research that aims to enhance social justice (14).

In addition to discussing issues concerning the trustworthiness of engaging PWLE in research, this paper provides an overview of PWLE contributions to each stage of the research process, underscoring the importance of their active involvement throughout, rather than engaging them only as symbolic participants. An examination of theoretical and methodological implications further underscores the significance of involving PWLE in research.

Professionals in traditional, evidence-based medicine have been called out for marginalizing PWLE by reinforcing rigid knowledge hierarchies and neglecting systemic power inequities (5). Additionally, having been associated with substance use of questionable legality and related activities, PWLE face stigma from other non-PWLE researchers, and are deemed to lack the trustworthiness that serious research entails (10). However, concerns about potential for biases (11) and undue influence on participants (16) can be mitigated by the adoption of reflexive practices throughout the entire study.

For example, research in substance use has generally attributed addiction recovery in individuals to clinical intervention, however this does not account for all instances of remission (17). For example, the discontinuation of substance use can occur with apparent spontaneity in individuals, without intervention; behavior which may be difficult to categorize or understand with traditional methods of analysis (17). It is logical to involve PWLE in this research as they are regarded as experts due to their firsthand knowledge and experiences, and their inclusion can enhance research by providing valuable and diverse perspectives into such nuanced situations [13]. The rigor and quality of all research can be elevated by adopting and describing the use of key concepts related to trustworthiness that were outlined by Lincoln and Guba (18).

The following four dimensions have been proposed as key indicators of trustworthiness in qualitative research [(18), as cited in (19)]:

Credibility refers to the accuracy of the study, which can be achieved by engaging in persistent observation, extended involvement, and triangulation of findings (30). PWLE are considered to have high credibility due to their real-life experiences and in-depth understanding of the nuances involved in the experiences of substance use diagnosis and treatment (4, 5, 7, 13, 14, 17, 30).

Triangulation of data from different methods, different theoretical approaches, and varying contexts can add credibility to the research by demonstrating rigor and in-depth analysis from various viewpoints.

Negative (deviant) case analysis adds to credibility by challenging researcher biases and adding transparency to the research.

In 1989, Guba and Lincoln recognized authenticity as an essential concept which expanded their earlier criteria of trustworthiness. Authenticity emphasizes the fair and accurate representation of participants’ voices and realities, moving beyond methodological rigor to incorporate the ethical dimensions of inquiry (21). Roennfeldt et al. (14) found that PWLE researchers are committed to honoring the individual voices of participants, while engaging in reflexivity throughout the entire process (6). As researchers, PWLE recognize that the focus is not on their personal stories. They are expected to maintain the confidentiality of their own experiences and avoid potentially influencing participants’ choices regarding treatments or decisions. Indeed, PWLE bring a heightened understanding of reflexivity and self-awareness, which ensures that personal biases and experiences do not influence the research process (16).

Asserted that PWLE possess in-depth knowledge that others lack, therefore they have the highest expertise on the topic that should be afforded a top level of validity [as cited in (7)]. “This is a kind of disease you can only comprehend if you have experience of your own. Nobody else understands what it means” [as cited in (7)].

Critics argue that PWLE engagement lacks objectivity, but “complete objectivity is neither possible nor ideal in research” (14). When engaging in research, all researchers including PWLE should identify the trustworthiness strategies that they employ, in order to demonstrate their commitment to rigor throughout the study. This will promote the acceptance of their research findings (30) and enhance the transparency and critical evaluation of the research (19).

By embedding PWLE expertise and reflexivity at every stage—from honing research questions to knowledge dissemination—the research process upholds the key dimensions of trustworthiness: credibility, transferability, dependability, and confirmability in addition to authenticity. This comprehensive integration counters skepticism about PWLE objectivity and demonstrates their vital role in producing rigorous, ethical, and impactful substance use research.

PWLE can be engaged in diverse ways during research, including as lead investigators, refining research questions, creating /advising on research design, analysis, ethics, developing methodologies, carrying out research activities, analyzing and interpreting data, facilitating knowledge translation, and indeed as participants themselves (4, 27). PWLE engagement has been shown to increase participant recruitment, inform service design, and enhance knowledge dissemination activities (5). In efforts to conceptualize PWLE involvement in research, major research processes are identified in Table 1 below, along with the contributions that PWLE can make to these processes.

PWLE engagement in all stages of research is essential because of the in-depth understanding and insight that they offer, while maintaining applicability to relevant participant populations. These processes, in conjunction with the trustworthiness indicators mentioned previously, highlight the utility of PWLE researchers by fostering ethical and respectful engagement with the data and participants. Overall, by engaging PWLE, research can become more inclusive, ethical, and impactful³.

The inclusion of PWLE has become increasingly recognized as vital to enhancing the relevance, impact, and quality of research (5, 7). Involving PWLE researchers will minimize wasted health research efforts caused by misaligned priorities and practical needs—estimated at 85% (3)—by committing to actionable, real-world outcomes rather than disconnected inquiries.

Despite concerns regarding the trustworthiness and potential biases of PWLE in research, PWLE were found to impart high levels of insight and experiential knowledge to every stage of substance use research, which can be supported with transparent reflexive and trustworthiness practices throughout.

Involving PWLE offers significant advantages for research while also fostering personal and professional growth for these individuals (5). PWLE are no different from others and have been shown to excel as leaders, researchers, and collaborators (5, 14). Their research insights are integral to questioning established theories, combating stigma, and creating services that address the varied needs of substance use populations. PWLE engagement can help dispel stereotypes about people who have formerly used substances and demonstrate that recovery is possible. This can counteract stigma and encourage such individuals to seek help without fear of judgment (5, 17).

A limitation of this paper is that it provides a discussion on PWLE, that is, people with past living experiences, rather than those who are currently living with the experiences in question. People with Living Experience are individuals who are currently using one or more substances and may or may not be in recovery, which is “a complex multi-faceted process of moving towards improved health, well-being and quality of life” (22). This paper focuses exclusively on People With Lived Experience due to the additional ethical considerations involved when working with individuals currently living with substance use. Such considerations may include concerns with current level of sobriety, the need for supervision, or support (however unplanned or unintentional this may be), accessibility and safety considerations, etc. Such ethical complexities are numerous and extend beyond the scope of this paper.

Despite this limitation, this paper highlights that PWLE contribute unique strengths that greatly improve the relevance, quality, and impact of research. Future research in mental health and substance use should prioritize the inclusion of PWLE on research teams to leverage their deep and extensive experiential knowledge, which will result in improved quality and outcomes of the research. This may involve tackling systemic barriers to inclusion and research funding that PWLE may be faced with. By valuing lived experience, we can promote more inclusive, effective, and ethical research practices that ultimately lead to better outcomes for the populations served.