As an undergraduate student working in a clinical research lab studying adolescent self-injurious thoughts and behaviors, I code qualitative data, review literature, and contribute to manuscripts. By working in a lab that aims to understand what these behaviors look like and what drives them, I’ve learned a great deal in investigating how we can intervene earlier and more effectively. I am, by every institutional measure, a student learning the craft of research from people who have spent their careers developing it. 

While I’m still developing the skills needed to contribute meaningfully to the evolving field, I’m also learning where young people like myself fit within the research process itself. It’s only by being involved in the process that we can help close the gap between what data can measure and what those experiences actually feel like. When young people are invited to help shape research, they don’t just strengthen the process: they make it more honest, more relevant, and better able to create change. 

What the Data Cannot See

A majority of what we know about how adolescents think and feel was produced by people who were not living those experiences when they designed the study, wrote the questions, or decided what the answers meant. Even in research explicitly designed around youth participation, a review of community-based participatory research spanning 1985 to 2012 found that while young people were frequently involved in selecting topics and collecting data, far fewer were engaged in analyzing data or interpreting findings, the stages where meaning is actually made. In relying on perspectives one step removed from the experience they seek to understand, this prompts questions about what studies systematically overlook when those most directly affected by a problem are excluded from the process of defining it.

It’s important to note that especially for groups of young people including LGBTQ+ youth, immigrant adolescents, and young people navigating poverty or housing instability, the gap between the researcher and the researched has historically been widest. Research on LGBTQ+ youth mental health, for instance, has been conducted by researchers outside those communities, often without fluency in the specific stressors that shape those experiences: family rejection, the particulars of disclosure, the role of online communities as primary sites of belonging as well as information for young people who cannot be out at home or at school. Similarly, adolescent research conducted with immigrant populations often operationalizes social relationships and family support in ways built around dominant cultural assumptions, individualism, nuclear family structure, peer-based socialization, that do not map onto the realities of bicultural identity, multigenerational households, or the particular strain of navigating the world in a second language under conditions of documentation uncertainty. What gets missed in those cases is not incidental. It is precisely the context that would allow a researcher to understand what they are seeing.

However, there remains an element absent from methods sections and procedural descriptions: lived experience, which returns to research the understanding that distance from expertise can often obscure. When I code transcripts and work through accounts of young participants describing difficult times in their lives, I sometimes encounter moments when a participant’s phrasing lands in a way I cannot attribute entirely to what I have been trained to notice. There are instances where I flag passages or draw connections that I am genuinely uncertain would have surfaced the same way for a reader without similar context. For example, a participant might use a phrase that reads as casual or insignificant when, in fact, it uses the kind of language prevalent in specific corners of Gen-Z internet culture, group chats, and the particular modern colloquial conversation. Phases like “doom-scrolling” or “leaving someone on delivered” rarely map into clinical categories, and though an outside reader might code such language as neutral or pass over entirely, I recognize its significance. Without familiarity and cultural context to interpret information accurately, the most significant details in a transcript can pass entirely unnoticed. 

Beyond semantics, a larger issue concerns whether researchers understand what daily life actually looks like for young people today. While an adult researcher might interpret reports of daily contact with friends via social media as phone calls or face-to-face conversations, I recognize that “talking to friends every day” can just as easily mean sending TikToks back and forth, or maintaining a Snapchat streak, which is simply sending and receiving blank photos solely to preserve a numerical count without any real connection. The social contexts the two realities describe are entirely different, and without the cultural fluency to recognize that, a researcher cannot fully understand what their data is describing. 

Lived experience does not replace the expertise a researcher brings. Evidence-based methodical frameworks like Youth Participatory Action Research exist precisely for this reason, formalize the inclusion of lived experience not as an anecdote but as a methodology, and hold it accountable to the same standards as every other part of the research process.

The Evidence for Doing This Differently

Youth Participatory Action Research, or YPAR, is a model that advocates for more young people in research projects as genuine collaborators, not only as the population being studied, but as co-designers and co-interpreters of the work itself. The evidence consistently shows that when that involvement occurs, the research improves in ways that matter. Research using YPAR yields levels of ‘relational trust’ between researchers and participants, resulting in more honest data, especially when exploring sensitive or stigmatized topics, such as adolescent mental health. Additionally, research developed with young people is more likely to produce tangible changes in schools and community policy, as they are adapted to actual needs rather than researchers’ assumptions.

Below are just some examples of organizations centering YPAR:

• The YPAR Hub at UC Berkeley, was founded by researcher Emily Ozer, PhD, whose work on youth-led participatory action research anchors much of the work cited here. The Hub has facilitated participatory research projects at dozens of schools, offering training for young people who then design and conduct original investigations into the issues shaping their schools and communities. Notably, its approach has been adopted by public health departments and community organizations nationwide, ensuring that access does not depend on university affiliation or prior research experience. 
• Another ambitious example is the McPin Foundation in the United Kingdom, a mental health research organization that has embedded lived experience as a central research function, rather than a consultative add-on. McPin employs individuals with lived experience of mental health conditions, including young people, as paid researchers and co-investigators, holding their contributions to the same methodological criteria as any other aspect of the research process. 
• Orygen in Australia further illustrates the value of proximity to lived experience, as it represents one of the world’s largest concentrations of youth mental health researchers. At Orygen, young people with lived experience are employed as paid peer researchers on active studies, including critical work in suicide prevention. They lead youth advisory groups, participate directly in data collection and analysis, and help communicate findings to the public. 
• In the United States, the REACH Youth Advisory Board is as a national example of this model. Built on the principle that young people with lived experience related to mental health challenges belong not only as research participants but as co-evaluators and communicators, the REACH Board has enabled its members to co-author peer-reviewed papers in clinical science in working with academic researchers. They contribute directly to identifying challenges and proposing solutions, precisely the interpretive stages from which young people have typically been excluded.

The populations that stand to benefit most from this shift are those for whom historical exclusion has been most severe. LGBTQ+ youth-led participatory research projects, including several that have emerged through university public health programs and LGBTQ+ community centers, have demonstrated that young people with lived experience of gender and sexual minority-related stress are uniquely positioned to identify research questions that clinical researchers have not thought to ask, and to interpret findings in ways that reflect the actual social contexts those findings describe. Research on immigrant adolescent mental health has seen parallel development, with community-based participatory models showing that involving young people who navigate bicultural identity and immigration-related stressors in the design phase produces instruments that measure what they are intended to measure rather than approximating it from the outside.

In a field where the gap between published recommendations and realities confronted by youth in crisis remains a continuous challenge, research that introduces more relevant questions, prompts truthful responses, and generates findings closely aligned with real experiences represents more than a baseline improvement: it’s the difference between knowledge that sits confined to academic journals and knowledge that reaches and benefits those who actually need it.

What This Means if You’re a Young Person Interested in Research

If you are in high school or college and curious about research, especially research that touches your own life or community, you occupy a valuable place in this dialogue. Your experience is not a conflict of interest; it is a context that enables greater understanding, which is always of worth. While methodological training remains important and requires time to develop, your lived experience complements it in often unappreciated ways. Look for labs at your university that study topics connected to your own experience and interests. Explore YPAR programs, many of which are run through community organizations and public health departments, and do not require any prior research background. When participating in studies, inquire not only about what is being measured but also about who decided what to measure and why.

The field is evolving, with more researchers interested in building collaboration with young people from the beginning, not exclusively as an afterthought. If you are twenty, seventeen, or fifteen, and recognize current gaps in research, that is valuable, and there are spaces, growing in number, where it is incredibly wanted.

To those in leadership positions, I urge you to recognize that the young people in your studies are not standalone data points. Some of them are future researchers and are already seeing things you aren’t. The real question is whether your process is built to recognize what they have to contribute and then meaningfully act on what they notice.