Advancing PPI in Research: How Can We Learn from Young People?

by Naomi Wainer, BeGOOD summer intern at the Department of Psychiatry, University of Oxford

When I began working with Professor Singh this summer, I was told the Department of Psychiatry in the University of Oxford is looking to develop its understanding of young people’s involvement with mental health concerns. Whilst looking at the topic of mental health through a young persons’ lens never fails to be fascinating, my research focused on young people’s engagement with research and national policy. The end goal was to provide the department with a resource that would aid the advancement of Patient and Public Involvement (PPI) in research pertaining to young people.

What is PPI?

PPI is essentially “research that is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. In practice this means bringing current and potential patients, carers and members of the general public into the process of research development – be it through sharpening research questions to improve their relevance, or developing research materials to make them more user-friendly. Now more than ever PPI in research is an unspoken ethical requirement, and for good reason. By opening up the world of research and actively including those who will be affected by its findings, PPI means a more efficient research process and more effective treatments.

Involving Young People

While there is an encouraging amount of information and guidance about PPI available from universities, research bodies and health charities , we were looking specifically for the presence of young people – a notoriously difficult age group to engage. A cohort with experiences different to those of adults, who thus communicate and organize themselves distinctively too. The Nuffield Council on Bioethics’ report on ‘Children and Clinical Research’ was our starting point, and lead us down a surprisingly deep rabbit hole on the current position of young people in research.

YPAGs and Other Acronyms…

We definitely didn’t anticipate there being such a strong foundation already in place for PPI with young people in research! Via the Clinical Research Network (CRN), we found our most useful resource: Generation R, a national network of six ‘YPAGs’, or ‘young person’s advisory groups’. Their mental health – specific group has made vital contributions, including work with ‘Depression: Asking the Right Questions‘, a project that consulted people affected by depression on the answers they need most.

While a multitude of pre-existing projects and teams laid the groundwork for where Oxford should start, they also revealed to us just how many factors there are to consider when it comes to involving young people in research, from practical to logistical considerations. For example, what sources will be most useful when it comes to recruiting of a diverse sample of young people into an advisory group? How should young people be compensated for their time? Should this group only ever meet in person, or should online formats be considered? How is it best to create a safe space for young people, especially those who have experienced mental health problems, to talk about sensitive issues? The finished report with our answers to all these delicate questions, is coming soon.

The Next Step

Our research led us to conclude that the Department of Psychiatry should aim to create a database of young people between the ages of 11-18 which could be drawn upon to advise on individual projects in mental health research. We strongly emphasized how online formats like social media are vital for engaging this age bracket. Of course this is no small undertaking, but current organizations like Generation R, YouthSpeak and ALPHA are proof of the indispensable and exciting contributions that young people can make to research, if they are involved! Personally, I would love to see young people pushing for inquiry into two endemic mental health concerns: the glorification of mental illness on social media and the difficulty of accessing mental health services, especially at university. For now, watch this space for the development of a YPAG in Oxford!

 

About the Author

Naomi image for bio

Naomi has just completed the first year of her Psychology Undergraduate Degree at the University of Edinburgh. She is interested in psychological and psychiatric treatments, and particularly how therapies interact with the circumstances of an individual. She is fascinated by how research findings across different fields (from the scientific to the sociological), can improve practices and policies, changing people’s lives for the better.

 

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