Your money for brain science? Social innovation with a new research charity for mental health

1. Your money for brain science? Social innovation with a new research charity for mental health Philip Campbell

2. Contents • The social need • The research opportunity • The foundational model • The research strategy • The donor proposition • Stigma? • Research and social innovation

3. Summary I shall describe the thinking behind a new public-donation charity intended to fund research into psychiatric disorders. The trustees (of which I am one) have an initial donation of £20 million with which to establish the organisation and initiate funding. The state of brain research is a critical factor in developing not only a research funding strategy but also a proposition for donors that is honest (there are no big quick wins) and yet inspiring. Fund-raising will also require the charity to understand donors’ attitudes towards mental illness. The issues of ‘stigma’ and neglect of the issue represent key challenges for social innovation, to which the charity will attempt to contribute.

4. The challenge • Mental illness is a major societal challenge, made worse cultural secrecy, stigma and unduly low investment. • Drug companies are retreating from this sector. • Heart, diabetes and cancer charities are big. The biggest: Cancer Research UK raises ~£400 million every year solely by direct public donations (legacies, shops, sponsored events, TV campaigns). • There is no such organisation covering research into all mental disorders. • One social innovation would be to significantly increase charitable giving for such research. • A larger innovation would be to change the culture and policies surrounding mental illness. • This talk describes aspects of the first innovation, while considering how it might assist the second innovation.

5. Mental (not neurological) disorders • Mental retardation • Neurodevelopmental disorders (ADHD) • Substance use disorders • Anxiety disorders (panic, phobias, …) • Obsessive compulsive disorders • Trauma- and stress-related disorders • Affective disorders – depression and bipolar disorder • Schizophrenia and psychotic disorders • Somatoform disorders • Migraine and headaches • Sleep disorders • Eating disorders • Personality disorders • Neurocognitive disorders

6. The challenge: launching a charity/foundation • An independent charity (yet to be given a name) has been founded in 2011 to fund brain research in order, ultimately, to reduce the burden of mental illness. • The Wellcome Trust has provided an initial donation of £20 million. Another charity has provided £1 million. • In principle, the charity will take money from anyone anywhere, and fund the best research anywhere, ie fully international, though mass fund-raising will initially focus on the UK. • Why now? Above all, stimulated by big advances in fundamental brain science. • Turning such advances into therapies is a huge challenge, and should not be hyped. But some diagnostics and treatments can make progress in the shorter term. • This is a long-term activity, intending slow but steady growth over decades.

7. The challenge: launching a charity/foundation Seven trustees, drawn from investment, business, the law, philanthropy and science are now: • Appointing a CEO • Researching branding • Commissioning market research towards a fund-raising strategy • Developing a research-funding strategy • Developing a public launch strategy

8. ECNP/EBC Report 2011Size and Burden of Mental Disorders and other Disorders of the Brain in Europe 2010 Hans-Ulrich Wittchen on behalf of the study group Institute of Clinical Psychology und Psychotherapy Center of Clinical Epidemiology and Longitudinal Studies (CELOS) Technische Universität Dresden, Germany This presentation summarizes and extends the findings reported in European Neuropsychopharmacology, 2011 (September issue)

9. Mental Disorders by prevalence(and estimated number of persons affected in millions) Neurologic disorders: Number of persons (in millions) affected by: (2.9m) (1.5m) Overall: 164.8 milion of the total 510 million EU population (1.4m) (5.0m) (4.3m) (7.7m) 0.4% in total (2.1m) (14.6m) (20.4m) 0,6% in total (3.3m) 1.2% in total (6.3m) (30.3m) Note: For many disorders, the 12-month prevalence refers to different ages ranges (like dementias to subjects aged 60+). Thus the estimated number of persons refers to different reference populations (29.1m) (29.1m) 12-month prevalence (no. persons affected)

10. The „hit list“ of „disorders of the brain“ in numbers Diagnostic group Estimated and adjusted number of persons in million

11. Complexity and interaction of burden ECNP and European Brain Council (EBC) Project 2011 II. Burden and health economic burden of mental disorders in the EU Family & Social network Patients´ suffering & Burden • Further factors: • - Stigma, guilt and self-blame • Time of onset in life span • Severity and stage of disease • Availability of treatments • Regional/national variability (eg health care system, social policy characteristics) Course and outcome of illness Health care system characteristics Social policy characteristics Health care professionals` burden The course, outcome and impact on burden depends heavily on the interplay of these factors Societal and health economic burden

12. Revised 2011 DALY estimates: Gender comparison Males: Total neuropsychiatric: 23.4% Mental dis. Neurological other Other disease groups Females: Total neuropsychiatric: 30.1% Mental dis. Neurological other Other disease groups DALY Rate per 10.000 persons

13. Depression: The disability burden is not equally distributed 12-months rates (%) Prevalence by age and gender In proportions (%)of all cause DALYS Age group Age group

14. Mental disorders: frequently early onset Neurological disorder: frequently later onset birth Old age Mental Disorders with proportionally high incidence in ….. Late adolescence Drug use disorders Panic, OCD, PTSD Mood disorders Somatoform disorders Schizophrenic dis. Bulimia nervosa Personality disorders. Adulthood (ages 20-50) Alcohol dependence Depression Generalized Anxiety dis. Sleep disorders Multiple Sclerosis Traumatic brain injury Brain tumours Neuromuscular dis. Later life Stroke Parkinson‘s disease Dementias Sleep disorders Subthreshold anxiety and depression „multimorbidity“ Childhood/adolescence Mental retardation Hyperkinetic dis./ADHD Conduct disorders Pervasive developm.dis. Phobias Anorexia nervosa Some epilepsies Old age Adulthood Alcohol dependence Depression

15. ECNP and European Brain Council (EBC) Project 2005 and 2011 The treatment situation for mental disorders is deficient Despite the existence of pharmacological and psychological treatments that are effective, treatment provision is highly deficient in the EU • Among all 12-month cases with mental disorders the majority receives no “treatment”! • Only 30-52% (by country) had contact with any health professional • Only 8-16% (by country) with the mental health specialty sector • Only 2-9% has received minimally adequate treatment • drug tx >1 month plus > 4+ visits OR psychotherapy >8 sessions • mostly drugs, psychological treatments rarely provided (0-3% of all affected) • Considerable treatment delays after onset: MD: 15.6 years • This situation of undertreatment, delayed and poor treatment is unique to mental disorders • The situation for neurological disorders is significantly better for most diagnostic groups considered

16. Conclusion: Disorders of the brain are the core challenge of the 21st century • Disorders of the brain account for over 27% of the disability adjusted disease (DALY) burden in Europe, being now the greatest contributor • Depression and neurodegenerative disorders are likely to increase further • It is assumed that the exceedingly high burden is directly linked to the extremely poor situation regarding mental health treatments in EU • Challenges (Meeting the higher demand for healthcare; adapt health systems to the needs of an ageing population while keeping them sustainable) • Unlike to other disease groups, mental are costly because of high indirect costs – and NOT because of direct treatment costs • E.g. medication costs account for only less than 10% of the total cost burden • The largest direct cost component is typically hospitalization • Can we reduce the indirect cost burden by increasing direct costs?

17. Recommendations for political action Mental disorders must become high priority in the EU (EU-commission, states) existing programe initiatives in this field must be strengthened and broadened Research emphasis: into the causes and developmental pathways of disorders of the brain in order to develop improved drug and psychological treatments and targeted prevention Improved models of allocation of scarce health care resources to mental disorders Industry and investors must be encouraged and supported to engage in disorder of the brain research as the core health challenge of the future . Curricula and training of all health professions need an update regarding Broader coverage of disorders of the brain and their appropriate treatment National policies should adopt these agenda points according to the specific situation in their country in order to promote the health of their citizens and to contain the immense and expanding costs of disorders of the brain Funding for basic, clinical and public health research must be drastically increased to reflect appropriately the true size and burden

18. European Programmatic Research by Science Area still ranks extremely low

19. Contrast between health burdens and research effort - UK

20. Possible types of brain research to be funded by the charity • Fundamental phenomena and mechanisms with possibility of identifying new diagnostics and, in the long term, drug targets. • Diversifying and enhancing psychological treatments, and studying underlying processes. • Studying social and cultural influences on individuals and groups relating to mental illness. • Integrating research at these various levels. • Disciplines: neuroscience (many subdisciplines, eg psychiatric genetics, developmental neuro), psychology, psychiatry, social science (sociology, anthropology, ethics)

21. Options: styles of possible research funding by the charity • Assume an initial level of £1-2 million per year. • Small grants (eg £70,000 per year) for outstandingly creative emerging researchers with track record but not firmly established, selected by prestigious international panel – over several years, will breed a generation of leaders but depends on hope that creativity will deliver outcomes. • Larger awards for targeted themes in research – depends on confidence in outcomes. • Collaborations with other agencies eg in the developing world – possibly lower priority while we establish our own independence with strong fund-raising and research portfolio.

22. Proposition for donors • The burdens of mental illness on businesses, other organisations and society are huge. • Most people know of sufferers, and are aware of pain and practical burdens borne by sufferers, families, friends and colleagues. • Your money will fund some of the world’s best researchers in investigating the most complex object in the known universe: the human brain. • You will help researchers find new diagnostics, preventive interventions and therapies. • You will help enhance and disseminate existing interventions and therapies, especially psychological approaches.

23. An example of the science • Cognitive dysfunction in psychiatric disorders: characteristics, causes and the quest for improved therapy • Mark J. Millan, Yves Agid, Martin Brüne, Edward T. Bullmore, Cameron S. Carter, Nicola S. Clayton, Richard Connor, Sabrina Davis, Bill Deakin, Robert J. DeRubeis, Bruno Dubois, Mark A. Geyer, Guy M. Goodwin, Philip Gorwood, Thérèse M. Jay, Marian Joëls, Isabelle M. Mansuy, Andreas Meyer-Lindenberg, Declan Murphy, Edmund Rolls, Bernd Saletu, Michael Spedding, John Sweeney, Miles Whittington & Larry J. Young • Nature Reviews Drug Discovery 11, 141-168(February 2012) • doi:10.1038/nrd3628

24. TABLE 1 | Main characteristics of cognitive impairment in psychiatric disorders, and a comparison with PD and AD*

25. Interesting questions in fund-raising • How to balance economic and social statistics versus personal and emotional messages? • How much to emphasize fundamental brain research versus treatments? • How to present the idea that mental illness is a biological mechanism? • How to present the idea that causes may be both innate and also the influence of personal experience? • Do we need to take account of stigma in any specific way? • How might fund-raising itself reduce stigma? • How else might this social innovation interact with the broader social innovations around mental illness? • Is this a different policy agenda than a promotion and measurement of ‘well-being’?

26. Thanks for your attention!