By Blanca Sanz-Magallón.
On November 23rd, we were honoured to host Dr. Gabriela Pavarini, from the Neuroscience, Ethics, and Society Research Group (NEUROSEC) at the University of Oxford. The event was a unique opportunity to discuss the role young people play in the development of mental health interventions and policy, and how the cutting-edge research carried out at Oxford by NEUROSEC is looking to challenge current attitudes by actively engaging young people in designing, testing, and implementing mental health interventions.
Participation has been shown to be beneficial both for young people and for the research carried out. Sense of agency is an important aspect of growth (1, 2), while participation improves the relevance, effectiveness, and acceptability of an intervention (3). Nevertheless, up until recently, young people’s role in mental health interventions has typically been restricted to a passive one. Regarded as “citizens in the making,” they are merely the beneficiaries of the interventions designed by older, more experienced researchers and policy makers. The notion that these “citizens of tomorrow” may have something to offer is not reflected in current research, where participation is rare—only 1% of all publications and 5% of empirical studies concerning young people have young people’s advisory groups to inform the research process (4). The participation of service users in the research and development of mental health interventions is a widely-acknowledged goal—nevertheless, this remains just an aspiration, which still has a long way to go towards being translated into practice (5).
Dr. Pavarini suggests that non-participation is likely the result of the interplay between unawareness of the benefits of participation—which leads to a lack of motivation to integrate young people—and a lack of insight into the logistics of how participation can be successfully implemented. Through her work with NEUROSEC, Dr. Pavarini seeks to showcase the different ways in which participation can be achieved, and how this collaboration between researchers and young people can lead to successful interventions.
Input from young people is key for ethical mental health innovation
I was particularly fascinated by one of Dr. Pavarini’s examples of such participation in research, which involved a study looking at young people’s moral decisions and ethical attitudes around predictive mental health innovations.
Predictive mental health technologies are a hot topic at the moment. Mental health risk can be calculated from all sorts of data: genetic profiling, functional MRI, medical records, etc. Methods to calculate mental health risk using digital markers like social media use, activity levels, sleep patterns, or speech and voice are quickly emerging, as these markers can be easily obtained through smart phones and can have great predictive value. Their potential benefit is great—mental illness can often be silent, and people suffering may be unaware of available resources or find it hard to reach out for help. Risk prediction can allow high-risk individuals to receive interventions—take for example signposting—which may be life-saving in some situations.
The use of these markers, however, brings up many ethical questions. Are young people able to interpret a risk score for what it truly is—just a risk or probability, and by no means a diagnosis? Can this knowledge cause undue anxiety? Do young people feel like the potential benefits outweigh the privacy concerns around collecting this data? How can important information, like lengthy “Terms and Conditions” statements, be presented in a digestible format for young people? Who will be able to access the data and the predictions? Could the storage of this data potentially have long-term impacts, like, for example, in the insurance market?
In all innovation, it is important to answer these moral and ethical questions, to ensure that development is headed in a direction that is ethically acceptable to society at large. This direction shouldn’t come exclusively from the research team or policy makers—it is essential for the general population, but most importantly the target population (in this case, young people) to be involved, and for their attitudes and preferences to be taken into account—after all, as the future users, their opinions are the most important ones! Participation of this kind is complex because it is difficult for the general public to fully understand and envisage the potential impact of unfamiliar, hypothetical, future technologies, and thus express a genuine, well-informed attitude.
The study in question gathered input from young people around these questions through an online game — Tracing Tomorrow. It is a simulation that takes one through a story-line, offering choices along the way. The situations are contextualised so as to allow the research team to gauge young people’s attitudes in the most authentic way, trying to recreate what the participants would feel if facing the given situation in real-life. This study design is a creative way of obtaining information about ethical attitudes towards a yet unknown tool or technology, and offers a pioneering method for promoting the participation and inclusion of young people and other underrepresented groups in Bioethics research and development.
Screenshots of the game, Tracing Tomorrow.
I look forward to reading about the study’s conclusions, and to seeing more work promoting inclusion and participation not just in mental health, but in other areas!
- Singh I. Commentary: What makes a life go well? Moral functioning and quality of life measurement in neurodevelopmental disorders – reflections on Jonsson et al. (2017). J Child Psychol Psychiatr, 58: 470-473. Published 2017. https://doi.org/10.1111/jcpp.12716.
- Ballard PJ, Hoyt LT, Pachucki MC. Impacts of Adolescent and Young Adult Civic Engagement on Health and Socioeconomic Status in Adulthood. Child Dev, 90: 1138-1154. Published 2019. https://doi.org/10.1111/cdev.12998.
- Singh I, Pavarini G, Juma D, Farmer M. Multidisciplinary research priorities for the COVID-19 pandemic. The Lancet Psychiatry 7,7: e36. Published 2020. doi.org/10.1016/S2215-0366(20)30228-5.
- Sellars E, Pavarini G, Michelson D, et al. Young people’s advisory groups in health research: scoping review and mapping of practices. Archives of Disease in Childhood. Published 2020. doi: 10.1136/archdischild-2020-320452.
- Stomski NJ, Morrison P. Participation in mental healthcare: a qualitative meta-synthesis. Int J Ment Health Syst. 2017;11:67. Published 2017. doi:10.1186/s13033-017-0174-y.