Mind Meets Money: how can data impact youth mental health policy and practice

Professor Bernadka Dubicka welcomed everyone as joint Chair and introduced the first speaker, Dr David Zendle from the University’s Department of Psychology.

David Zendle

Dr Zendle is co-lead on a multi-million pound award from the Economic and Social Research Council (ESRC) to establish a national Smart Data Donation Service (SDDS). The SDDS will address a significant gap in the understanding of our digital lives by empowering citizens to take control of their own data and share it safely with researchers.

An initial cohort of 90,000 video game users will be recruited to share their gameplay data with researchers, and this will be expanded in time to encompass donors of other forms of online data, including that from social media. The ambition is to better understand people’s digital lives, including importantly the relationship between time spend online and mental wellbeing, but also digital literacy, online community and safety, addiction, discriminatory behaviour and the flow of disinformation.

Dr Zendle observed that to date most data about online behaviour has been captured through self-report. The quality of this however is limited by people’s all-too-fallible memory plus cognitive biases that can lead to under or over-estimating for instance the time they spend online, how much they spend, the scores they achieve etc.

Another approach has been to request data from the digital/gaming companies that collect this but this is not ideal either as this can lead to conflict of interest. The SDDS elegantly bypasses this conflict by asking the individual to volunteer to donate their data by leveraging their right to data ‘portability’ – that is to access a copy of the data a company holds about them in a machine-readable format that can easily be transferred to another data controller. In return for volunteering their data, individuals will have the opportunity to gather immediate feedback about their online behaviour which they can potentially use to balance and enhance their digital lives. At an aggregate level the data will be accessible to everyone since it will be fully non-identifiable (unable to be traced to an individual). Access to more granular data will be via application only and in a secure Safepod setting.

In response to a question from one of the participants about ensuring that a fully diverse population is recruited, Dr Zendle explained that they will be conducting extensive outreach with a range of organisations, including the PSHE Association to reach a broad demographic.

Tim Doran

Professor Tim Doran from the Department of Health Sciences spoke next about the challenges of being a lead researcher on the Cass Review into gender identity services for children and young people in the UK. He spoke about the importance, when researching a controversial subject, of exercising extreme care in communicating via any channel that could be subject to a Freedom of Information Request and of limiting exposure to social media. He further advised the need for resilience, self-belief and self-care in the event of receiving hostile feedback.

Professor Doran observed that Gender Identity Development Services (GIDS) have been dealing with a rapid rise in referrals since 2010. Over the same period the debate around the nature of sex and gender has become increasingly prominent in the media, as well as ever more polarised and emotionally freighted. Regrettably, a lot of young people are being caught in the crossfire of what is in essence a clash between factions with diametrically opposed world views. There is a real danger that ideology is being set above, and preventing reasonable and evidence-informed discussion around, the emotional, physical and practical needs of young people. This is likewise threatening to impede and deter efforts to support these young people by evaluating existing, and developing new and more effective, interventions. The failure to agree a definition of sex and gender has real-world implications too - for instance in complicating the diagnosis of gender-related conditions.

Three talks on health economics

The remainder of the afternoon consisted of three shorter talks focusing on the economics of mental health.

Professor Richard Cookson from the University’s Centre for Health Economics spoke on behalf of his Research Fellow Shrathinth Venkatesh about the latter’s project modelling the long-term mental health consequences of early childhood poverty. Preliminary results suggest that modest public investment in tackling early childhood poverty, that is just enough to shift people out of poverty, may not deliver large financial savings to the public sector over a 5-10 year period but can nevertheless represent good value for money over a longer period due to substantial improvements to health and wellbeing during adulthood. However, this analysis may under estimate the medium-term financial savings  since it does not include potential savings from fewer children being taken into care and having contact with the  youth justice system, or savings to adult social care and housing services from reduced domestic abuse. The challenge however is selling the argument to the Government when policy-making typically operates on a 5-10 year cycle and when there is so much strain on the public finances.

Pre-doctoral Fellow Amy Barker’s presentation asked the question: does improving the quality of child and adolescent mental health services in England have the potential to produce cost savings? She advised that preliminary findings suggest there are some marginal cost savings from reducing waiting times, particularly in relation to treatments involving inpatient stays. Additionally the data indicates that current approaches to reducing patient readmissions are delivering cost savings. Future directions for this research include identifying and modelling additional factors that might influence both the likelihood of whether a person receives improved care and their health outcomes down the line to give a truer idea of how much health improvements directly result from improved care.

The last of the three talks was delivered by Professor Cheti Nicoletti from the Department of Economics and Related Studies on a study exploring the school performance and economic productivity in later adult life of those diagnosed in childhood with Attention Deficit Hyperactivity Disorder (ADHD). Professor Nicoletti drew attention to the importance of distinguishing between the inattention and hyperactivity components of the condition which can manifest to different degrees and in different ways in young males and females. Existing research evidence suggests that the inactivity component may be more present in females but also be under-diagnosed as the symptoms are less immediately manifest than with hyperactivity. It is important therefore to improve teachers’ and parents’ awareness of these symptoms so that measures can be put in place to protect the young person from some of the stressors in the school environment and to better tailor educational approaches to their strengths. She concluded that the economic cost of ADHD is substantial and reaches into many areas beyond health but that capturing these costs is challenging and data-demanding. More robust empirical evidence is needed to inform policy making.

Concluding remarks

After thanking all the speakers, joint Chair Professor Gega concluded the day by announcing the establishment of the Children and Young People's Mental Health Policy Research Group in a collaboration between IMRY and The York Policy Engine which is generously funding the initiative. The aim is for the Group to provide a two-way channel between researchers across the University and politicians and policy makers, with information about current policy challenges flowing one way and matching research evidence plus recommendations about potential policy blind spots and important emerging issues returning back.

The level of audience engagement was extremely high throughout and participants expressed how interesting and useful they had found the afternoon. Participants attested to a strong sense of a burgeoning cross-disciplinary  community in the area of children and young people’s mental health and expressed the hope for future opportunities for this community to come together to both share existing and develop new research.