GOWD-Toronto 6 June 2011 TRENDS IN HEALTH CARE REFORM Matilde Leonardi, MD, Prof. Head Neurology,Public Health,Disability Unit- Neurological Institute

GOWD-Toronto 6 June 2011

TRENDS IN HEALTH CARE REFORM

Matilde Leonardi, MD, Prof.

Head Neurology,Public Health,Disability Unit-Neurological Institute C. Besta IRCCS Foundation, Milan

Director COMA Research CENTREMember of Board of directors

Bioethic Centre Catholic University- Rome and MilanEU COURAGE in Europe project Coordinator

Vice President Italian Federation Neurological Associations

People aged 60 and over: about 600 millions in 2000; 1.2 billion in 2025 and 2 billion in 2050

About two-thirds of all older persons are living in the developing world, by 2025: 75%

In the developed world, the very old (age 80+) is the fastest growing population group

Women outlive men in virtually all societies; consequently in very old age the ratio of women/men is 2:1.

World Statistics

Source: WHO

Europe: demographic trendsData from the Communication on the Demographic Future of Europe (European Commission):

• The average number of children per woman is below the population replacement number of 2.1 per woman for industrialised countries, and this rate is falling further;

• The population consequences of the post-war baby boom;• The dramatic increase in life expectancy since 1960; • The fact that immigration, although primarily of working age,

will not compensate for the joint effect of low fertility and increased life expectancy.

The ageing of the populations

of Europe is inevitable

European StatisticsSource: Eurostat (Online Database)

Situation in Europe

At present, 27 EU countries have 18.2 million inhabitants aged 80+ (4%); Eurostat projects that by 2014 the corresponding number will be 24.1

million (5.2%).

Epidemiologic transition

Compression of morbidity

Pagina 1 - Titolo presentazione

Since population ageing is accompanied by an epidemiological shift from the

predominance of infectious diseases and high maternal and child mortality to that of non-communicable diseases, especially

chronic ones, health and social systems will need to be

reoriented to deal with increased populations of persons with disabilities (Olesen, Leonardi 2003)

The effect of an ageing population on health care

Ageing is strongly correlated with:

• increase in dementia, depression and other mental and neurological illnesses (Draper, 2004)

• disability prevalence Nearly 30% of people in the age group 55-64 report a disability and 63% of people with disabilities are older than 45 (EC communication on Disability Action Plan 2006-2007)

The Burden of Brain diseases: the socio economic scenario

Across 28 European countries (the EU plus Iceland, Norway and Switzerland) with a total population of 466 million, 127 million people or 27% are affected by at least one brain disease and the total cost of brain diseases amounts to €386 billion, or €829 per each European citizen.

(Olesen J, Leonardi M. The burden of brain diseases in Europe. Eur J Neurol 2003;10:471-7).

The effect of an ageing population on health care

With an ageing population, living longer and encountering more disabilities, there will be a

need in Europe for valid and comparable longitudinal data on the health of older adults in order to create a richer empirical basis for

analysis

DISEASE BURDEN

Mortality

Morbidity

Incidence

Disability

Functioning

Quality of Life

New priorities in the clinical, research, and political European

agendas

What is needed:- valid and reliable outcome measures for good statistics;- innovative measurement instruments for cross-population

comparative analyses; - to produce comparable longitudinal information on non-fatal

health outcomes – both mental and physical; - to produce reliable data on the linkages between health

status, quality of life and well-being

These measures would reflect the fact that ageing is a process, compression of morbidity is a fact and the

epidemiological transitions shifts towards an increased burden of brain disorders


Europe Trends and ActionsThe European Commission's Directorate General for Health and Consumer Policy (DG SANCO) invited in 2011 over 60 experts from across Europe to discuss, explore and create a common vision for healthy and active ageing. The aims were • to adapt health systems to the future demographic, • to meet the health needs of older people through innovations and technology, and • to keep older consumers active.

"In 2030, older people live in a society where they are not 'older people', but people with much in common with all age groups”

European Commission DG SANCO, 2010, Brussels

Health systems response to population ageing

• Policies that allow a healthy ageing of the population include a better coordination of health and long-term care services and enhanced prevention services to tackle obesity, smoking and mental illnesses.

• When these policies are implemented in good time, they are not only likely to allow more people to age healthily, but they will also help to make sure that health systems are properly equipped to accommodate population ageing.

Rechel et al. 2009. World Health Organization 2009 and World HealthOrganization, on behalf of the European Observatory on Health Systems and Policies

Health systems response to population ageing

• One of the most promising policy options to attenuate the potential impact of an ageing population appears to be the promotion of healthy ageing. When elderly people are in good health, they will need fewer health care resources and are also more likely to remain in the labour force.

Rechel et al. 2009. World Health Organization 2009 and World HealthOrganization, on behalf of the European Observatory on Health Systems and Policies

Policy issues and policy challenges

• Long-term care expenditures are projected to rise significantly as a percentage of GDP in many countries. In OECD countries this is estimated at between 2% and 4% by 2050. In the EU25, by 2040 the 65+ age group will account for 28% of the population.• Population ageing and compression of morbidity, changes in informal family support, increasing care costs and raised expectations of services pose major challenges to sustainability.

José-Luis Fernández et al. 2009. World Health Organization and World HealthOrganization, on behalf of the European Observatory on Health Systems and Policies

Policy issues and policy challenges

• State supported collective funding solutions can ensure that protection is provided to all those in greatest need and also help avoid catastrophic costs.• Private sector solutions alone have failed to provide a sustainable insurance system that can cover a large proportion of the population. Continued reliance on family support is not possible for all.

José-Luis Fernández et al. 2009. World Health Organization and World HealthOrganization, on behalf of the European Observatory on Health Systems and Policies


A new paradigm – keeping people Active and Able

• Health systems• Social care• Consumers• Centres of Reference

Many population surveys, including health surveys have an automatic cut off point at 65 years. This means that a growing proportion of society is not being surveyed and therefore their needs and opinions go unrecognised.



Increasing participation and reducing isolation

• to continue mental stimulation • acting at local level • EU suggestion: creation of an EU reference group of older people

European Commission Initiatives

• Europe 2020 Flagship initiatives - actions and initiatives in a collaborative nature, aiming to enable older people to live healthier, independent lives and for longer. • 2012 - European Year for Active Ageing• EU Health Strategy and EU Consumer Policy Strategy


Growing old with disability : a new scenario?

Ageing but without disability:

The schizofrenia of science

• It is necessary to define some crucial points and the debate around ageing and disability could help

• Re-thinking the concept of disability can help to rethink the concept of human being, that is the base for politics, and this could lead us to re-think the sense of politics itself

Defining disability: re defining policy

Importance of disability and of its definition

for the political debate

• UN CONVENTION FOR THE RIGHTS OF PEOPLE WITH DISABILITY

• WHO-ICF Classification and its bio-psycho-social model of health and disability

3.5.2008 Entry in force of UN Convention on the rights of PwD :

higher recognition of the rights of pwd

Universal model and human rights• UN Convention places the rights of persons

with disability within the human rights and this makes people with disability NOT a social cathegory, this is coincident with ICF, as their rights are the rights of all human beings even if -to be proclaimen and reaffirmed -they have to be translated into the disability condition, a condition that belongs to ALL human being

Body functions and structures Activities and Participation

Health condition

EnvironmentalFactors

PersonalFactors

(disease, trauma)

Context Factors

Bio-psycho-social Model

Applying an old model to new needs …

Cultural changes: the ICF’s revolution

DEFINITION:

any person in any moment of life can have a health condition that

in a negative environment becomes disability

• Diagnosis alone does not predict service needs, length of hospitalisation, level of care or functional outcomes. This means that if we use a medical classification of diagnosis alone, e.g. the ICD, we will not have the information we need for health planning and management purposes.

• Disability is a multi-dimensional phenomenon arising out of an interaction between the individual's health status and the physical and social environment (Leonardi et al.2006). Disability data, and the instruments to measure them, must reflect this bio-psychosocial model of disability.

The underlying theory of the ICF is based on two important principles that directly affect measurement strategies:

• the principle that disability is a common, indeed universal feature of the human condition, rather than the mark of a social minority group (universalism);

• functioning and disability are continuous phenomena, matters of 'more or less' rather than strict dichotomous categories.

Following these principles it is necessary to collect information having a comprehensive

description of disability

Data across ageing studies as well as across disability studies is not comparable, lacks face validity and is inadequate to monitor changes over time, because– relies on a priori definitions;

– employed assessment instruments are not based on ICF conceptualisation of health state, which is distinct from presence of diseases, QoL and well-being;

– disability refers only to presence of impairments, producing discrepancies between disability and mortality data;

– does not enable cross-population comparisons.


Lack of data comparability

• Studies failed to recognise that diversity in functioning, especially when it occurs in later life, is a natural experience of human beings.

• Understanding how the environment can facilitate performance means to enhance persons’ experience for a better participation, health, quality of life and well-being.

• Built environment and social networks have been demonstrated to play a crucial role in influencing health and functional outcomes.


Role of environment

• In order to ensure the development of a Europe-wide strategy to identify the determinants of disability in ageing, it is imperative that

– inconsistencies in surveys be addressed and– a scale that is strictly comparable across populations be

developed to correct systematic reporting biases.

• Only then, trends over time can be accurately detected and valid comparisons can be made across population groups across and within countries.

• Therefore…..


Need for a European wide strategy on disability and ageing

COURAGE in EUROPE COURAGE in EUROPE ProjectProject

Collaborative research on Collaborative research on AgeingAgeing

www.courageproject.euA European Commission project

funded within the Seventh Framework Programme Number

HEALTH-F2-2009-223071

The Background of COURAGE in EUROPE Project:built enviroment

• The built physical environment in which individuals live can significantly increase or decrease the impact of disability, not only regarding personal mobility or accessibility to infrastructures, but also in its strict connection with aspects related to social environment.

• Although activity limitations are mainly affected by the presence of a health condition, this relationship is also influenced by the environment: poor self-rated health has been associated with structural factors in the built environment (Subramanian et al., 2006), and poor quality of the built environment has been associated with higher prevalence of psychological symptoms (Araya et al., 2007).

The Background of COURAGE in EUROPE Project: social capital

• Community empowerment is “an unavoidable feature of any health promotion feature” (p.255, Laverack and Labonte, 2000). Participation and trust are core concepts of the notion of social capital which relate to community empowerment.

• Social capital can contribute to the development of policies as it offers – among others – a common language and ways to analyse interactions between policy-makers, and to build bridges on societal level, but also between social and financial stakeholders (Woolcock and Narayan, 2000).

COURAGE in Europe is a three-years project, whose aim is to develop a measure of health and health-related outcomes, for an ageing population, that:– Offers objective and evidence-based prevalence

trends;– Relates them to both quality of life and well-being

outcomes;– Relates them to the role of health determinants

such as built environment and social networks.


COURAGE in EUROPE Project

• The impact of COURAGE in Europe, done in Finland, Spain, Poland on 12.000 people, will be to produce data, and a valid methodology for creating a database on ageing and disability that will help inform how health, social, environmental and economic policies, affect the health status of individuals and populations over a lifetime and at older ages.

• By helping to show the relationship between health and socio-economic status, health and well-being, COURAGE in Europe will support Member States in organizing their health systems, and in particular to operationalize the principles of equity, solidarity and universality.


Impact of COURAGE in EUROPE Project


The normative value of description

• The descriptive analysis of the situation like the one sugggested by COURAGE, of a person, the knowledge of his/her health condition, of his barriers, his facilitators, has an implicit “normative” value.

• Knowing that a person is denied rehabilitation for his age (e.g above 65) or for her gender (girls with disability in some countries) is not only a description as it highlights the lack of respect of human rights, thus opening a request for justice

According to ICF’s perspective the focus of attention should move from disability /person

with disability to the ENVIRONMENT in which

people live

Growing old with a disability,“becoming” a person with disability when

growing old: the case of old people with Down Syndrome and of their caregivers in

Milan


In Italy DS 1 in 750 newbornAverage life 58 years (Università di

Bologna, 2011). 60% of people with DS in Italy are

adults more that 25 years old (Istitituto Superiore di Sanità,

2002).


At 45 yrs people with DS can be considered as old

Ref. BROWN R., MATTHEWS B. TAYLOR J., Quality of life - Ageing and Down syndrome: Research and Practice, University of South Australia, 2001

In Italy ageing of people with DS is a new phenomenon that requires clear

and new policy strategies.

Functining and disability according to ICF: a research


Reaserch protocol:

• Consenso informato

• Scheda Socio-Demografica

• Checklist ICF• Questionario sulla QoL (basato sui domini di A&P)

• SF-12 (somministrato sia alla persona con SD, ove possibile, sia al caregiver)

• CAREGIVER BURDEN INVENTORY


38 people in Milan older than 45.

In Italy (2002) 3000 people with DS are older than 45

Ref. Mastroiacovo P, Diociaiuti L, Rosano A, Di Tanna GL. Epidemiology of Down syndrome in the third millennium. Atti del Congresso "L'adulto con sindrome di Down. Una nuova sfida per la società" San Marino,

Maggio 2002

Approximately 195 people with SD older than 45 are in Milan


SI

NO

NON SO

Domanda non svolta

Does your son/daughter know he has DS?


21,6

29,0

36,4

43,8

51,2

58,6

Risultati Physical Component Summary su 9 anziani con SD

17,5

27,6

37,7

47,8

57,9

68

Risultati Mental Component Summary su 9 anziani con SD

RISULTS SF 12 on 9 old with SD

4 out of 9 declare that they feel physically better than the normative Italian value

All subjects (n=9), report better mental component

compared to Italian normative


Out of 31 people 20 live still with their families.Between them in 75% cases,the caregiver is

principale la mamma, 20% a sister , in 5% is the father.

I questionari sono stati proposti in totale a 19 caregiver: a 1 caregiver non è stato possibile proporre queste domande.

CAREGIVERS


% Caregivers (n=20) date of birth

CAREGIVERS ( ref year 2011)


21,6

29

36,4

43,8

51,2

58,6

66

Risultati Physical Component Summary on 19 Caregivers

17,5

27,6

37,7

47,8

57,9

68

Risultati Mental Component Summary su 19 Caregivers di anziani con SD

RESULTS SF 12 on 19 Caregivers of old people with DS

only 1 out of 19 declare to fell physically better compared to

narmative Italin values

Only 4 out of 19 declre to fell better in the mental health componeta compared to normative Italian value

Interaction person-environment

• If it is true that ageing and disability are an issue that concerns all people then it is not a theme for a limited interested group only but it is a theme that could help to redefine the whole politics.

What is politics?

• For Hannah Arendt politics is “taking initiatives together with others, modifing the world that is between human beings and that unifies and divides their different pluralities”

• Rethinking disability and rethinking policies for disability, as UN convention and ICF tend to propose, means, at its rooths,

to rethink the idea of Man upon which policy is based

Disability as universal issue

• Disability as such affects all welfare systems• Gives policy a role and responsability• Tends to put an idea of human being as the

base for policy and policy development

Martha Nussbaum says that the issue of JUSTICE can be understood only if it is undersotood who is a human being?, meaning that the issue of justice FOLLOWS the antropological issue.

Theory of justice

• Nussbaum says that a society with justice doesn’t have to ignore the needs of all its citizens and the burden on those that have to take care of them (especially women).

• Any theory of justice has to consider all the situations of need, dependency, disability, fragility and care, that caracterize the life of ALL.

Bio-psychosocial vision of disability and human being

• Speaking about disability today means to adopt a complete, integrated vision of the person in all his/her aspects, thus a biopsychosocial vision as proposed by the ICF.

• Only considering all phases of life of all people will allow us to consider what societies should have to guarantee justice to all.

• Society, then all of us, has to be a facilitator and not a barrier

We all have the right to be supported just due to the dignity we have as human

beings.Beyond our being man or woman,

adults, old or children, disabled or not

How much disability?

• All this brings us to consider the role of environment (the political, economic, social contest) in another perspective: how much disability countries CHOOSE to keep?

• It si important to know that this is not a destiny, but as instruments such as UN Convention and ICF exist, it is a choice.

Documents

GOWD-Toronto 6 June 2011 TRENDS IN HEALTH CARE REFORM Matilde Leonardi, MD, Prof. Head Neurology,Public Health,Disability Unit- Neurological Institute