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

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

Distribution of costs: Total disorders of the brain European Neuropsychopharmacology (2011) 21,

Distribution of Costs: Neurological & Mental disorders Neurological disordersMental disorders European Neuropsychopharmacology (2011) 21,

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

Global ageing in the 21 st 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

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?

Polypharmacy

Provision of culturally relevant care The challenge of migration

Time with the doctor minutes

Access to medication A very uneven playing field

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 ) Counterfeit medicines EU Legislation anticipated - this will tighten supply chain

Way forward Innovation Trust

A quick fix

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

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

New approach to clinical trials

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

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)

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

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

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

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

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

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

TodayFuture Today we diagnose and treat based on symptoms and a subjective interpretation of symptoms 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 The future of medicine

Competition The pharmaceutical industry The clinicians Patient organisations Science should be shared

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

Management of long term chronic illness

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

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

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 Darwin