A world in which no one is held back by mental health problems.
Wellcome is committed to working with others to achieve progress on youth anxiety and depression. We will also use our own strengths – our power to convene, lead and fund transformative science allied with public and policy engagement.
As an independent philanthropic organisation, Wellcome is uniquely placed to challenge existing power structures and to take bold risks while focusing on our specific goals.
Our focus is on finding effective, scalable and acceptable ways to prevent, intervene, stop relapse and manage anxiety and depression in young people age 14 to 24. We want approaches that are tailored for both individuals and contexts in high and low resource settings.
Impressive and important research has already been done in the mental health field, but the current research communities are siloed and fragmented, for example:
The result is that rich and important findings from within and across disciplines can be lost or have less impact in practice than they could have.
Within each community, there are passionate and impressive researchers. But too often the research agenda is dominated by a small number of powerful senior researchers who may bring strong allegiance to a particular intervention or belief system.
It can be hard for early career researchers to be heard if they are not supporting the dominant narrative (Lieb et al 2016). The field is very focused on debates seeking one ultimate cause.
We know very little about underlying mechanisms of how current treatments work (Holmes et al 2018) or why they do not work for everyone (Cuijpers 2017). There has been no improvement in outcomes over the past 50 years.
There is an ever-growing number of ‘brands’ of psychological treatment; over 450 different interventions are recommended by SAMHSA – the US body which registers evidence-based mental health interventions. While researchers advocate for complex multi-layered approaches, there is no agreement, or even discussion, about what the ‘active ingredients’ that underpin effectiveness might be.
By active ingredient, we mean the elements of an intervention described at a level of granularity most close to the hypothesised mechanism of action. An active ingredient for treatment of cancer might include destruction of cancer cells; in diabetes it might include stabilising blood sugar levels.
Such active ingredients are less clear in mental health. For example, in cognitive behaviour therapy for depression, is the active ingredient cognitive restructuring, replacing dysfunctional thinking with more positive framing of negative events? Or is it the creation of positive behaviours which reinforce each other? Or the fact that the patient is in a relationship with a supportive therapist?
To achieve better interventions leading to improved mental health outcomes, we need to radically alter the way the mental health field functions. We need to build a new community on new foundations, with different power dynamics and focused on different research questions.
Wellcome is kick-starting a radical transformation of mental health science to look at treatments and approaches from a whole new angle.
This will involve weaving currently siloed knowledge together and bringing forward previously disempowered voices. We believe the new field of mental health science can be created through:
The new field can only grow securely if we build new firm foundations. This will not be easy.
To do so, we need to:
Rather than relying solely on, say, psychiatry, psychology and neuroscience, we seek to include a fuller spectrum of approaches including economics, anthropology, the humanities and social sciences.
Our definition of mental health science will include any discipline that uses evidence in a rigorous and transparent way to inform understanding of mental health.
While recognising and encouraging the field of mental health science to engage with a wide range of questions, we will focus on the key question: what works for whom in what contexts and why in relation to anxiety and depression for young people aged between 14- 24 in high and low resource settings?
We want to ensure that young people with lived experience of anxiety and depression are embedded in the programme. This will include being involved in framing and judging funding calls.
We will work from the outset with other funders, publishers and others to ensure young people’s input is appropriately supported, acknowledged and recompensed.
International longitudinal research studies suggest that most people will experience anxiety and depression before middle age. Few will access professional help, yet most do not have chronic problems (Schaefer et al 2017, Kwong et al 2019, Whiteford 2013). Research has focused on the small population who do access treatment, and who come from contexts which can be characterised as WEIRD (Western, Education, Industrialised, Rich and Developed) (Henrich et al 2010).
Despite the growing agenda to empower people to be more active agents in monitoring and managing their own health (eg Mulley et al 2015, Elwyn et al 2012), young people with anxiety or depression are often advised that the only solution to their difficulties is professional help. While professional services undoubtedly are and will continue to be an incredibly important source of help, there has been virtually no research on other approaches.
Over 100 different potential interventions that do not involve professional input have been described as ways young people might address anxiety and depression. These include exercise, participation in arts, peer support, listening to music, engaging with nature and community engagement. Yet virtually none of these have been scientifically researched (Wolpert et al 2018).
Current research datasets rely on questionnaires and biological samples taken at discrete time points and related to a research question from a research community. In part due to the prior limitations of technology, researchers have not collected sufficiently granular information on things that may be highly relevant, such as life events and social and economic context (Pickett and Wilkinson 2010, Bringmann et al 2013).
There is an ever-growing range of commercial technological innovations which seek to support people to manage and monitor their own mental health. These technologies generate large quantities of data, but do not support end users to be actively involved as citizen scientists in learning from the data, and they are not readily available for research use.
Concerns over data privacy combined with commercial and academic protectionism make it very hard for researchers to analyse data from existing datasets.
We will support ways to increase researchers’ access to existing datasets with a focus on ‘reverse engineering’ analysis (examining those who ‘got better’ and those who didn’t). This will advance understanding of the mechanisms underpinning what works for whom, in what contexts, and why.
We seek to create a user-controlled global databank that will allow us to collect largescale data over extended periods in a flexible way. We want to enable everyone to monitor what works for them and use big data for new research insights.
It would include data that is relevant across the full span of the mental health science community, including behavioural, biological, affective, cognitive, social and cultural data.
The databank will have the twin focus of supporting long-term scientific findings while enabling end users to learn from the data rapidly to help them manage and monitor their own mental health. There will be an emphasis on the radical premise that control of data will rest with end users rather than researchers (Delacroix & Lawrence 2018, Taylor & Wilson 2019).
The databank will support enhanced understanding of the potential active ingredients of effective interventions and how these relate to outcomes based on the core outcome metrics. It will support modelling of individual and group differences (Jaques et al 2017, Wright and Woods 2019) as well as acting as a platform for embedding research trials ranging from multi-site randomised control designs to single case studies.
We recognise this databank is a high-risk endeavour. The history of health research and innovation is littered with exciting-sounding tech-based propositions that have failed to meet their promise. We think in this instance the high potential warrants the risk. We have built in stringent scoping and feasibility testing.
We don’t believe the main challenge here is ultimately a technical one, although we anticipate many technical challenges, but issues related to ethics and engagement.
Only if these conditions are satisfied will we progress.
Global attention for mental health has never been higher. Burgeoning rates of anxiety and depression in young people (Fink et al 2016) are leading institutions that have not previously focused on mental health to see mental health as a key priority. This includes schools, universities and workplaces. But we risk missing the opportunity to make use of this spotlight if we do not act with speed and focus in relation to the mental health science agenda.
Both policy makers and civil society leaders are deluged with suggested solutions to address mental health issues, but they have limited comparable data to make informed choices between them. They do not have access to the emerging science, and policy-making practices do not always embed research to determine the best ways address the problem in diverse settings.
Up to now, mental health advocacy to date has focused on two things – more access to professional treatments and addressing stigma. There is very limited policy or civil society agenda around the need for science, and there is a lack of public understanding of how science can contribute to progress in addressing mental health problems (MQ 2017).
Where science is discussed, the media tend to focus on biological research with little discussion of other forms of research (Butlin et al 2019). Allied to this lack of clear message or approach, there is currently very limited funding for mental health science. Mental health accounts for less than 3% of global health budgets annually and spending on mental health science is even more restricted.
There is little tradition of philanthropy in mental health and almost no tradition of public donations. Less than 3% of funding for mental health research in the UK originates from public donation as compared with 68% of funding for cancer research (MQ 2017).
We want to embed understanding of what science can contribute as central to the mental health policy agenda.
We also want to leverage our substantial investment to bring more funds into the field. We want to create sustainable solutions that will allow funding into the field to continue after the end of our programme in 2030.
We want to work with educational organisations and workplaces to find ways to undertake mental health science in these contexts and find the best ways to improve mental health for people in education and employment.
We are building our programme based on four pillars of practice:
Building on these pillars, and focussing on the three workstreams, within ten years we expect a research system that is:
We believe the scale of the change required to achieve our vision will only be possible via an ethos of empowering those who have been globally underrepresented in young people’s mental health science to date including: early career researchers, young people and those from non-WEIRD contexts, drawing on the widest and most rigorous evidence base possible, and working with others to support advocacy and sustainability.
We are very alert to the challenges in implementing this strategy but we hope others will join us on this exciting journey to our shared aim of helping create a world where no one is held back by mental health problems.
The first two years (2020-2022) we are focused on building foundations. This includes work to:
We seek to draw on a wide range of expertise to undertake these foundational activities.