Co-Designing Research Priorities in Developmental Neuroscience: A Community-Based Participatory Approach

This paper describes a community-based participatory approach in Bradford, UK, where adolescents co-designed and prioritized research themes for a new developmental neuroimaging program, revealing mental health and stress as top concerns while highlighting demographic variations in other interests.

The Gist

Imagine a group of scientists trying to build a new, high-tech map of the teenage brain. Usually, these scientists sit in their labs, look at data, and decide what questions to ask, almost like chefs deciding what ingredients to put in a soup without ever asking the people who will actually eat it.

This paper is about a group of researchers who decided to flip the script. Instead of guessing what teenagers care about, they invited the teenagers into the kitchen to help design the menu.

Here is the story of how they did it, broken down into simple steps:

1. The Problem: The "WEIRD" Gap

The authors point out that most brain research is done on a specific type of person: Western, Educated, Industrialized, Rich, and Democratic (WEIRD). It's like trying to understand all of humanity by only interviewing people who live in a single, very wealthy neighborhood. They realized they were missing the voices of the actual experts on being a teenager: the teenagers themselves.

2. The Plan: A Two-Step Dance

To fix this, they ran two separate "workshops" (think of them as creative brainstorming sessions) with students in schools in Bradford and Leeds, UK.

Step 1: The "Dragon's Den" (Idea Generation)

• The Cast: 79 students aged 11 to 18.
• The Activity: The researchers gave the students a crash course in how brain scanners (EEG) work. Then, they challenged the students: "If you were a scientist with a brain scanner, what would you study?"
• The Output: The students worked in groups to create posters and pitch their ideas like they were on the TV show Dragon's Den (or Shark Tank). They didn't just say "I want to know about stress"; they designed whole experiments.
• The Result: The researchers analyzed these posters and found four big buckets of things the kids cared about:
  1. Health & Well-being: Stress, anxiety, and how the body feels.
  2. Anti-Social Behavior: Why do some kids break rules? What about drugs or smoking?
  3. Everyday Routines: Sleep, gaming, and daily habits.
  4. Social Media: How phones and online life change how we see ourselves.

Step 2: The Vote (Priority Ranking)

• The Cast: A much larger group of 376 students from different schools.
• The Activity: These students hadn't seen the first group's posters. They were given the top 10 ideas that came out of Step 1 and asked to rank them from "Most Important" to "Least Important."
• The Goal: To see if the big ideas held up when more people voted on them.

3. The Big Discoveries

When the votes were counted, some clear patterns emerged:

• Mental Health is King: Without a doubt, Mental Health was the #1 priority for almost everyone. It was the most important thing they wanted to understand.
• Stress is the Shadow: Right behind mental health was Stress (especially school exam stress).
• The Gender Gap: Girls cared significantly more about mental health than boys did.
• The Age Gap:
  • Younger teens (15-16) cared most about Everyday Routines (like sleep and gaming).
  • Older teens (17-18) started worrying more about Anti-Social Behavior (like crime or rule-breaking). This makes sense; as you get older, you have more freedom, and the consequences of bad choices feel heavier.
• The "Place" Factor: Where you go to school mattered. Students at a private, wealthy school cared less about mental health than students at schools in poorer areas. The researchers guessed this might be because the wealthier school had more resources to help kids, so the problem felt less urgent to them.

4. Why This Matters (The "So What?")

The authors argue that science is better when it listens to the people it's studying.

• Better Recipes: If scientists study what teenagers actually care about, the research is more likely to be useful in the real world. It's like a doctor asking a patient what hurts before prescribing medicine.
• Empowerment: The students felt heard. They weren't just "subjects" to be scanned; they were partners who helped decide the direction of the science.
• Context is Key: The study showed that a teenager's brain doesn't develop in a vacuum. Their worries depend on their age, their gender, and whether they live in a rich or poor neighborhood.

The Bottom Line

This paper is a blueprint for how to do science with people, not just on them. By letting teenagers drive the bus, the researchers hope to build a future where brain science actually solves the problems that keep young people up at night, rather than just answering questions scientists thought were interesting.

In short: They asked the teenagers, "What's on your mind?" and the answer was loud and clear: "Our mental health, our stress, and our daily lives." Now, the scientists are going to build their research around those answers.

Technical Summary

1. Problem Statement

Developmental neuroscience research has historically suffered from a lack of diversity and limited community engagement, often relying on WEIRD (Western, Educated, Industrialized, Rich, Democratic) populations. Crucially, the primary subjects of this research—adolescents—are rarely consulted during the design phase. This exclusion risks misaligning scientific agendas with the actual lived experiences, needs, and priorities of the target population, potentially limiting the translational impact and relevance of findings. There is a need for systematic documentation of participatory approaches that integrate Community-Based Participatory Research (CBPR) principles into the earliest stages of neuroimaging research to address these inequalities and improve ecological validity.

2. Methodology

The study employed a two-stage, mixed-methods, community-based participatory approach involving adolescents from four secondary schools in Bradford and Leeds, UK. The research was situated within a "place-based" framework, utilizing local deprivation indices to contextualize findings.

• Study 1: Priority Generation (Qualitative)

  • Participants: 79 secondary school students (Years 7, 8, 9, and 12; ages 11–18) from four schools.
  • Procedure: Five one-hour workshops were conducted. Students received a brief introduction to neuroscience and EEG technology. They were then tasked with designing their own neuroimaging studies in groups, focusing on topics they deemed important.
  • Output: Groups presented their ideas via "Dragon's Den" style pitches and created research posters.
  • Analysis: Reflexive Thematic Analysis (Braun & Clarke, 2019) was applied to the visual and textual data from the posters to extract key themes.

• Study 2: Priority Ranking (Quantitative)

  • Participants: 376 students from four different schools (distinct from Study 1 to avoid bias).
  • Procedure: Students were introduced to the same neuroscience concepts and presented with ten research priorities derived from Study 1's thematic analysis.
  • Task: Participants ranked these ten priorities from most to least important.
  • Analysis: Mean rankings were calculated. Exploratory analyses were conducted using Mann–Whitney U tests (for gender and age groups) and Kruskal–Wallis tests (for school differences) with False Discovery Rate (FDR) correction for multiple comparisons.

3. Key Contributions

• Methodological Framework: The paper provides a structured model for co-design (distinct from full co-production) in developmental neuroscience, demonstrating how to engage adolescents in agenda-setting without requiring them to possess technical neuroscientific expertise.
• Place-Based Approach: It operationalizes "place-based" research by mapping participant priorities against local Indices of Multiple Deprivation (IMD), highlighting how socioeconomic context influences research interests.
• Demystification of Neuroscience: The study illustrates how brief, accessible workshops can empower adolescents to act as "experts of their own experience," bridging the gap between lay understanding and scientific inquiry.
• Differentiation of Co-Design vs. Co-Production: The authors explicitly define their scope as "co-design" (influencing priorities) rather than "co-production" (involvement in all research stages), setting a realistic boundary for early-stage participatory work in complex neuroimaging fields.

4. Key Results

Thematic Findings (Study 1):
Reflexive thematic analysis of the student posters yielded four overarching themes:

1. Health and Well-Being: Encompassing mental health, stress (particularly exam-related), and physical health.
2. Anti-Social Behaviour: Focusing on decision-making, substance use (vaping/smoking), and peer influence.
3. Everyday Routines: Including sleep patterns and gaming habits.
4. Social Media Use: Concerns regarding self-perception, mental health, and digital well-being.

Quantitative Priorities (Study 2):
Across the 376 participants, the priorities were ranked as follows (1 = highest priority):

1. Mental Health (Mean Rank: 2.39)
2. Stress (Mean Rank: 3.49)
3. Sleep (Mean Rank: 4.90)
4. Physical Health
5. Decision Making
6. Anti-Social Behaviour
7. Social Media Use
8. Smoking and Vaping
9. Everyday Routines
10. Gaming (Mean Rank: 8.48)

Demographic Variations:

• Gender: Female participants ranked Mental Health significantly higher than males. No other significant gender differences remained after FDR correction.
• Age:
  • Late Adolescents (17–18): Prioritized Anti-Social Behaviour significantly more than mid-adolescents.
  • Mid-Adolescents (15–16): Prioritized Everyday Routines significantly more than late adolescents.
• School/Context: Significant differences were found across schools for Mental Health, Anti-Social Behaviour, and Everyday Routines. Notably, students in a private, fee-paying school (School A) ranked Mental Health lower than students in state schools, suggesting resource availability may influence perceived urgency.

5. Significance and Implications

• Relevance to Translational Research: By centering adolescent voices, the study ensures that future neuroimaging programs address issues that are genuinely salient to the population, increasing the likelihood of real-world impact and policy relevance.
• Ecological Validity: The findings suggest a need for experimental paradigms that move beyond abstract tasks to incorporate context-specific stressors (e.g., academic pressure) and everyday behaviors (e.g., sleep, gaming) as identified by the participants.
• Addressing Inequality: The study demonstrates that research priorities are not uniform; they vary by socioeconomic status, age, and gender. A "one-size-fits-all" approach to developmental neuroscience is insufficient.
• Future Directions: The paper lays the groundwork for future "co-production" phases where these prioritized topics (specifically Mental Health and Stress) will be used to collaboratively develop specific neuroimaging tasks and interventions, moving from agenda-setting to tool development.

In conclusion, this study validates the utility of participatory priority-setting in developmental neuroscience, arguing that such approaches should become a standard early step to ensure research agendas reflect the lived realities of the adolescents they aim to study.