MS Patient Summit 2015, Rome: Influencing the direction of healthcare decision making - Mary Baker

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4th Interna*onal MS Pa*ent Summit

‘Societal and Health Challenges in Europe -‐

Influencing the direc*on of healthcare decision-‐making’

Dr Mary Baker MBE, BA, Hon DSc European Brain Council

Rome 21st – 22nd May, 2015

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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, 718-‐779

Distribu*on of costs Total disorders of the brain

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Indirect costs 40%

Direct healthcare costs 37%

Direct non medical costs

23%

European Neuropsychopharmacology (2011) 21, 718-‐779

The world is living longer

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A baby girl born in Japan has a 50/50 chance of living 100 years

Global ageing in the 21st century

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‘The world stands on the threshold of a social transformaCon -‐ even a revoluCon -‐ 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

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In the 1920’s, a couple in their 80’s had 44 female rela*ves -‐ 14 of these did not work outside the home environment In the year 2000, a couple in their mid 70’s had 13 female rela*ves -‐ 3 of these did not work outside the home environment

Dependency ra*o

1960 1990 2009/10 Australia 6.4 5.2 4.4 Canada 6.8 5.4 4.5 France 4.8 4.1 3.5 Germany 5.2 4.2 3.0 Italy 6.1 4.0 3.0 Spain 6.9 4.3 3.7 UK 5.0 3.7 3.6 Poland 9.4 5.7 4.9 Average 6.3 4.6 3.8

Dr Panos Kanavos London School of Economics

Fewer to care for more: a declining dependency ra*o

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MS Pa,ent Summit -‐ Rome

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How familiar are you with Health Economists?

1.  I know all about them and what they do. 2.  I know a li@le bit about their role. 3.  I have heard of them, but don’t know what they do. 4.  I have never heard of them and don’t know what they do.

0 10 20 30 40%

20%

36%

20%

24%

1. I know all about them and what they do.

2. I know a little bit about their role.

3. I have heard of them, but don’t know what they do.

4. I have never heard of them and don’t know what they do.

How familiar are you with health economists?

Polypharmacy and co-‐morbidity

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Provision of culturally relevant care

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The challenge of migra*on

Time with the doctor

98 .....12 minutes

Access to medica*on

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A very uneven playing field

Counterfeit medicines (CMs)

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•  2011: in EU CMs risen to over •  27million

•  WHO es*mate CMs sales in developed countries is 1% and

•  10% in developing countries

•  GMP Colombian style; ingredients include: Ø  Boric acid Ø  Lead-‐based road paint Ø  Shoe polish Ø  Brick dust

Profit before pa*ents!

Way forward

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Partnership

Communica*on Innova*on

Trust

Europe 2020 for a Healthier EU

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Innova*on Union To find innova,ve ways to promote ac,ve and healthy ageing Digital agenda for Europe Focuses on developing and using digital applica,ons to address social challenges

Agenda for new skills and jobs Will help to highlight the economic role of mental health and the health of the workforce

European plaiorm against poverty Boost efforts on health promo,on and preven,on with a focus on reducing health inequality


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What do you know about the European Semester?

1.  I have heard of it and know what it is. 2.  I have heard of it but can’t remember the details. 3.  I have heard of it, but don’t know what it is. 4.  I have never heard of it!

0 20 40 60 80%

9%

8%

5%

78%

1. I have of it and know what it is

2. I have heard of it but can't remember the details.

3. I have heard of it, but don't know what it is .

4. I have never heard of it!

European Semester?What do you know about the

Making it Happen: The European Semester

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The European Union has set up a yearly cycle of economic policy coordina,on called the European Semester

Excellent Science Innova*on Societal Impact

Outcome Measures

Funding

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FP5 (pre EBC) Total in FP6 FP7 2007 -‐ 2013

Brain 115m 431m 2b (June ‘13)

Cancer 235m 914m 1,716b

Cardiovascular 54m 232m 554m

EBC con*nues to push for beker funding of brain research

Innova*ve Medicines Ini*a*ve: Joining forces in the Healthcare Sector

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IMI poriolio: budget breakdown up to call 11

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0,0 1,0 2,0 3,0 4,0 5,0

Rheumatology Pharmacology & Pharmacy

Endocrinology & Metabolism Neurosciences

Clinical Neurology Biochemistry & Molecular Biology

Psychiatry Genetics & Heredity

Research & Experimental Medicine Immunology

Overall

IMI papers EU papers average 2.04 average 1.13

Cita*on impact 2010-‐1012 19% of IMI publica*ons are highly cited

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§  28 countries working together to tackle neurodegenerative diseases

§  €100 milllion made available since 2011

§  New partnership with European Commission §  €30 million call on:

§  Longitudinal cohorts §  Animal and Cell Models §  Risk and Protective Factors

Opportuni*es for research -‐ JPND

A quick fix ...

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Lifestyle choices

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•  Ageing •  Infer*lity

60% of NHS budget is spent on lifestyle issues:

•  Alcohol •  Obesity

•  Sexual health •  Smoking

•  Drug Addic*on

........

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‘The doctor of the future will give no medicine, but will interest his pa*ents in the care of the human frame, in diet, and in the cause and preven*on of disease’

Thomas A Edison 1847 -‐ 1931

The Pa*ent’s Voice

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The Regulator and the Payer

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Professor Guido Rasi Chief Execu*ve Officer

European Medicines Agency (EMA)

Professor David Haslam Chairman

Na*onal Ins*tute of Health & Clinical Excellence (NICE)

New approach to clinical trials

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Clinical trials – the facts

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•  30% of all clinical trials fail to recruit a single person

•  85% of clinical trials face delays due to limited par*cipa*on

•  Fewer than 10% of Parkinson's pa*ents ever take part in trials, despite overwhelming interest in working with scien*sts to help speed treatment breakthroughs

Harveian Ora*on 2008 Professor Sir Michael Rawlins

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“Randomised controlled trials (RCTs), long regarded as the 'gold standard' of evidence, have been put on an undeserved pedestal. Their appearance at the top of "hierarchies" of evidence is inappropriate; and hierarchies, themselves, are illusory tools for assessing evidence.”

"Hierarchies akempt to replace judgement with an oversimplis*c, pseudo-‐quanta*ve, assessment of the quality of the available evidence."

........

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Arguments about the rela*ve importance of different kinds of evidence are an unnecessary kind of distrac*on.

What is needed instead is:

•  for inves*gators to con*nue to develop and improve their methodologies •  for decision-‐makers to avoid adop*ng entrenched posi*ons about the nature

of evidence •  for both to accept that the interpreta*on of evidence requires judgement

Future challenge for society

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•  The need for both the Regulators and the Payers to have a collec*ve impact on trial design, conduct and data interpreta*on is becoming more obvious to all stakeholders

•  But nothing much is happening – the divide remains

•  What happens if this con*nues for another 10 years?

Pa*ent reported outcomes

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Have you worked on projects with Universi*es?

1.  OYen. 2.  Occasionally. 3.  Rarely. 4.  Never.

0 10 20 30 40 50%

21%

19%

19%

41%

1. Often.

2. Occasionally.

3. Rarely.

4. Never.

Have you worked on projects with Universities?

Pa*ent reported outcomes

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Develop a measurement acceptable to European Medicines Agency (EMA) and Food & Drug Administra*on (FDA) in partnership with: •  Academia (University of Oxford -‐ Ox-‐PAQ

project)

•  Regulatory, payers, pa*ents and their families

•  Clinicians •  Industry

Distress is not enough

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•  Establish credibility •  Collect evidence •  Contribute to discussions •  Understand health technology assessments

Pa*ent advocacy groups need to:

HTA Summer School for Pa*ent Groups

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Working for people living with brain disorders

Collabora*on between EFNA and London School of Economics:

Ini*ated in September 2009 – ongoing, twice yearly

The Pa*ent’s journey

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Informa*on is needed from:

•  Clinician -‐ about the disease •  Industry -‐ about the medica*on •  Pa*ent non-‐governmental organisa*ons -‐ about the fellow travellers

A major challenge – societal engagement

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•  How do we involve pa*ents/carers in research?

•  An informed pa*ent is a cost effec*ve pa*ent (Wanless)

Good Prac*ce

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Beker Outcomes with Beker Data

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Allows data sharing at a European Level and addresses a widely recognised gap in data on:

-‐ age and gender -‐ causes and triggers -‐ availability, access and effec,veness of drugs -‐ costs and resources

European Network of MS Registries

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EUReMS project co-‐funded by the Health Programme 2011-‐2014 (European Commission, DG Sanco)

Collabora*ve approach to MS data: pa*ents’ representa*ves, Clinicians and academics

11 Project partners incl. 5 MS Registers par*cipa*ng In 2011

The future of medicine

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Today Future

Today we diagnose and treat based on symptoms and a subjec*ve interpreta*on of

symptoms

In the future we diagnose and treat based

on biology and select medica*on based on an objec*ve evalua*on

of the benefit/risk for the individual pa*ent

Personalised Medicine

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P4 Medicine:

Personalised, Predic*ve, Preven*ve, Par*cipatory

mHealth and Personalised Medicine

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e-‐Health and emerging technologies

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e-‐Health and emerging technologies •  improve quality of care

•  increase pa*ent autonomy, mobility and safety •  help clinical decisions based on computer modelling of diseases

Priori*es in e-‐Health : Research FP7 2007-‐2013 DG Connect Goals to offer e-‐Health solu*ons to:

e-‐Health and emerging technologies

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ICT Solu*ons for e-‐Health and e-‐Inclusion: •  home monitoring systems •  health alert systems

•  molecular diagnos*c systems at point of care •  home rehabilita*on •  risk assessment •  electronic health records •  computer models of diseases and decisional systems based

on models for selec*ng treatments and performing earlier diagnosis -‐ VPH (virtual physiological human)

Priori*es in Health : Research FP7 2007-‐2013 DG Connect

The Future of the Mind

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“We've learned more about our brains in the last 15 years than in the whole of human history and new technologies like MRI means we're entering a golden age of neuroscience”

The renowned physicist Michio Kaku, author of "The Future of the Mind”

Balance

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PHYSICAL &

BIOTECHNICAL

SCIENCE

ETHICS

SOCIAL

ENVIRONMENT

& POLICY

SOCIAL

SCIENCE

& HUMANITIES

“Sciences are the ‘how’. Humani*es are the ‘why’. I don’t think you can have the ‘how’ without the ‘why’,”

George Lucas, Producer, Screenwriter and Director

From the bench to the bedside

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Rx

HTA review ~ 2 years

New drug applica*on & review ~ 2 years

Preclinical & clinical development ~ 8 years


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Rx







Rx








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Rx





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Rx





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Rx




Management of long term chronic illness

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•  The ability to adapt and self manage

•  To be able to par*cipate in social ac*vity despite all limita*ons

Year of the Brain

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Protect, preserve, develop and nurture

our most vital asset: the brain

In Europe – 2014/2015 An exci*ng programme to influence and improve the lives, the health and the future for many millions of people

Year of the Brain Our vision and overall objec*ves

Improve the care of those affected by brain disease today

and Ensure that treatments are available to them

as quickly as possible

•  Encouraging higher prioritisation of brain disease in the EU and national health systems

•  Promoting earlier diagnosis and more equitable access to adequate treatment and care

YOtB vision ‘To protect, preserve, develop and nurture our most vital asset: The Brain'

Increase investment in research for future generations

•  Securing increased funding for basic research into the brain

•  Strive after optimising regulatory conditions to incentivise innovation from research to patient

Educate society about how to nurture and protect the brain

•  Raising awareness of the human and economic burden of brain disease

•  Communicating personal and societal strategies for preventing brain illness and brain disability

Securing early and adequate treatment for the patients affected today

Raising awareness of the challenges with brain illness

Driving improvements in treatment for the generations to come

Focu

sing

on

the

need

s of

so

ciet

y

Music and the Brain

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Olga Bobrovnikova – A piano diva living with MS

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What makers 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.’

A quote oVen aWributed to Charles Darwin!

Health is Wealth

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Health should be viewed as an investment rather than a cost

A Healthy Na*on is a Wealthy Na*on


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Friday, May 22nd, 2015 Summit Moderator: Kaz Aston (UK) 08:30

08:40

09:20

10:00

10.40

Welcome & Introduction - Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It)

Plenary session

•  Patient rights in research and treatment - Dr Vittorio Martinelli (It), Aliki Vrienniou (Gr)

•  Influencing the direction of healthcare decision-making - Mary Baker (UK)

•  The ‘Expert’ Patient - Jean Hardiman-Smith (UK)

Panel discussion

11.15 Break 11.30 Breakout sessions

•  Patient rights in research and treatment (co-facilitator - Michele Messmer (It))

•  Influencing the direction of healthcare decision-making (co-facilitator - Silvia Traversa (It))

•  The ‘Expert’ Patient (co-facilitator - Federica Balzani (It)) 12.30 MS World Café

Best Practice Sharing Fair for Patient Advocates

13.00 Buffet Lunch 14:00 Breakout sessions (continued) 15:00 Breakout group feedback to plenary 15:55 Closing Remarks – Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It) 16.00 Meeting Close

Raising standards; The voice of people with MS

MS Patient Summit 2015, Rome: Influencing the direction of healthcare decision making - Mary Baker

Health & Medicine

Transcript of MS Patient Summit 2015, Rome: Influencing the direction of healthcare decision making - Mary Baker