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Exploring new ways of securing student consent is a crucial investment for the future of BrainWaves science

We talked with researcher Emma Soneson about the challenges.

6th Form students working in a classroom

At the heart of BrainWaves’ research we are building over time, a large cohort of adolescents who will be actively contributing to the science programme.

So, it is little surprise that our first study, now underway, is exploring how we can set this cohort up for success. Leading on the development of this study is BrainWaves Professor Mina Fazel and Postdoctoral Researcher Emma Soneson – called The BrainWaves Adolescent Consent Study – and are investigating the best ways of securing agreement from young people to take part in research whilst also giving them a positive sense of empowerment from the experience.

A foundation of BrainWaves is getting positive, willing participation to ensure high quality, robust data are obtained.

“What we did not want to do was embark on a 10-year study and just assume that we could secure consent from students in exactly the same way researchers have done for the last 50 years,” Emma explains. “We wanted to look at several approaches to how we collect consent and the impact of those approaches on young people’s perceptions of anonymity, privacy, confidentiality, trust and autonomy when taking part in the BrainWaves programme. At the same time, we want the students to feel excited that they are helping science too.”

To do that, BrainWaves is investigating if there is a better way to get consent and build trust in order to encourage young people to meaningfully take part in research. Meaningful student participation is important because young people are often uncertain whether the information they provide is truly confidential, which in some cases influences what information they provide to researchers. That has impact on the integrity of the data.

Having accurate data is crucial for learning about what causes poor mental health and how we can intervene to enable better outcomes. Yet, sometimes young people can find it difficult to share information about sensitive topics and experiences in their lives. This limits our ability to develop effective interventions and approaches to improve mental health.

“Child maltreatment is perhaps the greatest risk factor for mental ill health”, according to Emma. “It’s important we know more about it. Unsurprisingly a lot of young people are quite scared about the consequences of disclosing their experiences in a research context.”

To gauge levels of comfort and sensitivity, the BrainWaves Adolescent Consent Study is randomly assigning young people from participating schools to complete a questionnaire designed in 5 different ways.

  1. A fairly conventional approach where students are asked to consent at the start of the study.
  2. A design requiring consent to be given at the start of the study and re-confirmed a second time after they have completed the entire questionnaire;
  3. Unit-by-unit consent with agreement required for each separate topic AND a chance to opt out of some units altogether;
  4. Unit-by-unit consent requested for each separate topic, with a chance to opt-out AND an additional option to choose to answer each unit anonymously instead.
  5. A design where students answer the questionnaire completely anonymously.

All this is so important for BrainWaves as selecting the most effective method will help define the value of the whole programme. “It is exciting because it is a huge methodological innovation, which will allow us to measure things so much better” Emma explains.

In fact, the BrainWaves innovation has already generated excitement more widely with the consent design discussed in a textbook before the study has even been completed.

Thousands of teenagers have already taken part, completing questionnaires online. There will then be a series of focus groups to understand attitudes on issues including consent, privacy, and autonomy in research. The outcomes from this hugely important trial will be known very soon. Quantitative data collection is going to be completed by the end of January with focus group (qualitative) data coming in March or April.

Of course, little of this could be achieved without the active commitment of schools who are inviting their students to take part. For them there are benefits with each school getting anonymised reports on their students’ mental health and wellbeing. These have been a driver behind so many schools wanting to participate. Whilst these reports are only snapshots, they will allow them to better understand potential needs and interventions on areas such as loneliness. Emma Soneson emphasised: “If as a result of getting their report, a school recognises a need for more clubs and social activities to address isolation, then it is a benefit to that community.”