Dr Mary Baker MBE President, European Brain Council

1. Danish Ministerial Conference Horizon 20/20 Societal Challenges Copenhagen 1 February 2012 Dr Mary Baker MBE President, European Brain Council Patron, European Parkinson’s Disease Association

2. Costs of disorders of the brain In Europe 2010: • €798 billion across 30 countries and 19 groups of disorders • Has increased from €386 billion in 2004 European Neuropsychopharmacology (2011) 21, 718-779

3. Distribution of costs: Total disorders of the brain European Neuropsychopharmacology (2011) 21, 718-779

4. Distribution of Costs: Neurological & Mental disorders Neurologicaldisorders Mental disorders European Neuropsychopharmacology (2011) 21, 718-779

5. The world is living longer A baby girl born in Japan has a 50/50 chance of living 100 years

6. Global ageing in the 21st century ‘The world stands on the threshold of a social transformation - even a revolution - with few parallels in humanity's past.... perhaps two-thirds of all people who have ever reached the age of 65 are alive today.’ Peter G. Peterson

7. The changing role of women In the 1920’s, a couple in their 80’s had 44 female relatives - 14 of these did not work outside the home environment In the year 2000, a couple in their mid 70’s had 13 female relatives - 3 of these did not work outside the home environment What is the situation in 2012?

8. Polypharmacy

9. Provision of culturally relevant care The challenge of migration

10. Time with the doctor .....12 minutes

11. Access to medication A very uneven playing field

12. Counterfeit Medicines Counterfeit medicines • 2008 ‘Project Medifake’ European Customs initiative discovers… • 3 million packs captured over two months • 4 MHRA batch recalls in 2007 • EAASM found 62% of medicines bought from internet to be fake or substandard (Counterfeit Superhighway - 2008) EU Legislation anticipated - this will tighten supply chain

13. Way forward Trust Innovation

14. A quick fix

15. Safety versus innovation Education of benefit/risk Quote from cancer patient: ‘I am already in an unsafe world, a little more unsafeness doesn’t worry me’ Dr Albert Jovell, Barcelona

16. Transparency HMA/EMA Guidance Document on the identification of commercially confidential information and protection of personal data within the structure of the marketing authorisation (MA) dossier – release of information after granting of a marketing authorisation The challenge ... effective communication

17. New approach to clinical trials

18. Patient reported outcomes • Develop a measurement for central nervous diseases in partnership with: • academia • clinicians • patients and their families

19. The Regulator and the Payer Professor Guido Rasi Chief Executive Officer European Medicines Agency (EMA) Sir Michael Rawlings Chairman National Institute of Health & Clinical Excellence (NICE)

20. Engagement with the Payers 60% of NHS budget is spent on lifestyle issues: • Ageing • Infertility • Sexual health • Smoking • Drug Addiction • Alcohol • Obesity

21. Distress is not enough Patient advocacy groups need to: • Establish credibility • Collect evidence • Contribute to discussions • Understand health technology assessments

22. HTA Summer School for patient groups Collaboration between EFNA and London School of Economics: • September 2009 • May 2010 • June 2010 • September 2010 • June 2011 • September 2011 Working for people living with brain disorders

23. The Patient’s journey Information is needed from: • Clinician – about the disease • Industry – about the medication • Patient NGOs – about the fellow travellers

24. A major challenge – societal engagement • How do we involve patients/carers in research? • An informed patient is a cost effective patient (Wanless)

25. Working together • Patients have a voice and need: • to be heard • to be listened to • to be inclusive Join the team

26. The future of medicine Today Future In the future we diagnose and treat based on biology and select medication based on an objective evaluation of the benefit/risk for the individual patient Today we diagnose and treat based on symptoms and a subjective interpretation of symptoms

27. Competition • The pharmaceutical industry • The clinicians • Patient organisations Science should be shared

28. From the bench to the bedside New drug application & review ~ 2 years Preclinical & clinical development ~ 8 years HTA review ~ 2 years Rx

29. Management of long term chronic illness • The ability to adaptand self manage • To be able to participate in social activity despite all limitations

30. The Patient Academy • Partnership with • London School of Economics • Objectives • Patient-centered research • Patient-centered training • understanding benefit/risk • patient reported outcomes • improving health literacy

31. Partnership • The grand challenge of society requires co-operation and partnership from a range of stakeholders • Creating high performing networks is essential • European Brain Council and the Year of the Brain are examples of this in practice

32. What matters most ... ‘It is not the strongest of the species that survives nor the most intelligent that survives. It is the one that is most adaptable to change.’ Charles Darwin1809 - 1882