European Disability Forum
EDF Amendments on Proposal for a Regulation
Establishing Horizon 2020 - The Framework
Programme for Research and Innovation (20142020) (COM(2011)809 final)
September 2012
“In the development and implementation of legislation and policies to
implement the present Convention, and in other decision-making
processes concerning issues relating to persons with disabilities, States
Parties shall closely consult with and actively involve persons with
disabilities, including children with disabilities, through their
representative organizations.”
Article 4 Paragraph 3 of the United Nations Convention on the Rights of
Persons with Disabilities
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Table of contents
1. Executive Summary - EDF Key Demands with Regard to Horizon 2020 ...... 3
2. Amendments on Proposal for a Regulation Establishing Horizon 2020 The Framework Programme for Research and Innovation (2014-2020)
(COM(2011)809 final) ............................................................................... 4
Recital (new)................................................................................................. 4
Recital (new)................................................................................................. 4
Article 12 - External advice and societal engagement................................... 5
Article 14 - Selection and award criteria ....................................................... 5
Article 15 Gender equality ............................................................................ 7
Article 16 - Ethical principles ......................................................................... 8
Article 18 (new) – Civil Society Organisations ............................................... 9
Article 22 - Information, communication and dissemination ...................... 10
Annex I Broad lines of the specific objectives and activities – Part III
Societal challenges – 1. Health, demographic change and well-being ........ 13
Annex I Broad lines of the specific objectives and activities - Part III
Societal challenges - 6. Inclusive, innovative and Secure Societies - 6.3.1.
Inclusive societies ....................................................................................... 21
Annex I Broad lines of the specific objectives and activities-Part III Societal
challenges - 6. Inclusive, innovative and Secure Societies - 6.3.2.
Innovative societies .................................................................................... 22
3. APPENDIX ............................................................................................... 24
3.1. EDF Position on Horizon 2020, June 2012, is available on EDF
website. ............................................................................................. 24
3.2. EDF Amendments on Proposal for a Regulation laying down
the rules for participation and dissemination in “Horizon 2020 – the
Framework Programme for Research and Innovation (2014-2020)”
(COM(2011)810final), September 2012, is available on EDF website. 24
3.3. EDF Amendments on Proposal for a Council Decision
establishing the Specific Programme implementing Horizon 2020- The
Framework Programme for Research and Innovation (2014-2020)
(COM(2011)811 final), September, is available on EDF website. ....... 24
3.4. EuRADE Policy Statement is available in word format on
EuRADE website. ............................................................................... 24
3.5. New Priorities for Disability Research in Europe, Report of the
European Disability Forum Consultation Survey “European Research
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EDF AMENDMENTS ON PROPOSAL FOR A REGULATION ESTABLISHING HORIZON 2020 - THE FRAMEWORK PROGRAMME FOR RESEARCH AND
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Agendas for Disability Equality” is available in PDF format on the
EuRADE website. ............................................................................... 24
3.6.
Contact Person at the EDF Secretariat: .................................. 24
EDF Amendments on Proposal for a Regulation Establishing Horizon 2020
- The Framework Programme for Research and Innovation (2014-2020)
(COM(2011)809 final), September 2012.
The document is available in English and on alternative format upon
demand.
©European Disability Forum 2012. This document may be quoted and
reproduced, provided the source is given.
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1. Executive Summary - EDF Key Demands with Regard
to Horizon 2020
We, persons with disabilities, believe that it is vitally important that
Horizon 2020 both funds research which is relevant to the lives of
persons with disabilities and in line with the research priorities of
Disabled People’s Organizations (DPOs), as well as provides opportunities
for DPOs, and other civil society organizations, to participate in research.
This position paper outlines the key amendments to the legislative
proposals which we believe are essential if Horizon 2020 is to deliver
research which is relevant to persons with disabilities, and if the
programme is to be open to researchers with disabilities as well as DPOs,
and provide for meaningful involvement of persons with disabilities:
- Disability-related research funded by the EU should be
systematically grounded in a human rights perspective promoting
participation and access of persons with disabilities to society, in
order to produce research which is useful and meaningful. We
believe that the proposal should be amended in this respect under
Part III Societal Challenges, Objective 1. Health, demographic
change and well-being, and in Ojective 6. Secure, innovative and
inclusive societies.
- We believe that the proposals should allow for 100% funding for
DPOs participating in research projects. If this is not the case, it
will be extremely difficult for DPOs to contribute, whilst our
perspective and contribution can greatly enhance the quality and
value of the funded research for society as a whole.
- The EU should allow for reasonable accommodation in research
policy and programmes and for additional funding to cover all
disability-related costs: in order to ensure that researchers and
persons with disabilities are able to participate and contribute fully
to research funded under Horizon 2020, EU funding rules should
allow for additional funding to cover all the disability-related costs
of individual participants.
- Accessibility of documents and research material shall be
guaranteed to persons with disabilities: no specific reference is
made to the need to ensure that information and communications
are made available in formats which are accessible to persons with
disabilities. It is vital that persons with disabilities are able to learn
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about funded research projects and access the results of the
research on an equal basis with others. For this reason, the
proposals must make appropriate references to making
information available in accessible format.
2. Amendments on Proposal for a Regulation Establishing
Horizon 2020 - The Framework Programme for Research
and Innovation (2014-2020) (COM(2011)809 final)
Recital (new)
(New recital) Having regard to the
United Nations Convention on the
Rights of Persons with Disabilities
concluded by the European Union
on the 23rd December 2010
Justification
On 23rd December 2010, the EU concluded the United-Nations
Convention on the Rights of Persons with Disabilities (UNCRPD) which
entered into force on 22nd January 2011. It is the first Human Rights
Treaty concluded by the EU and, as a consequence, all EU policy and
legislative acts must comply with this Convention.
Recital (new)
(New recital) Accessibility of
information and communication
actions concerning Horizon 2020,
including
communication
concerning supported projects and
results, requires the provision of
accessible
formats
for
all.
Accessible formats include, but are
not limited to, large print, Braille,
easy-to-read text, audio, video, and
electronic format.
Justification
Persons with disabilities should have equal access to information and
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communication actions concerning Horizon 2020, including
communication concerning supported projects and results, all the more
so given that it is about public funding.
Article 12 - External advice and Article 12 - External advice and
societal engagement
societal engagement
(1) For the implementation of
Horizon 2020, account shall be
taken of advice and inputs provided
by:
advisory
groups
of
independent, high level experts set
up by the Commission; dialogue
structures
created
under
international
science
and
technology agreements; forward
looking activities; targeted public
consultations; and transparent and
interactive processes that ensure
responsible
research
and
innovation is supported.
(1) For the implementation of
Horizon 2020, account shall be
taken of advice and inputs provided
by:
advisory
groups
of
independent, high level experts set
up by the Commission; dialogue
structures
created
under
international
science
and
technology agreements; forward
looking activities; targeted public
consultations; active consultation
of organisations of persons with
disabilities, and transparent and
interactive processes that ensure
responsible
research
and
innovation is supported.
Justification
In order to produce research which is useful and meaningful to society,
we believe that it is vital that persons with disabilities and their
representative organisations are fully included in Horizon 2020 decisionmaking process. This is crucial if we want to ensure that European
research delivers results in line with the needs of society and citizens,
especially persons with disabilities. No mention is currently made of
involving persons with disabilities and their representtaive organisations
in Horizon 2020 research and the proposal should be amended as
proposed.
Article 14 - Selection and award Article 14 - Selection and award
criteria
criteria
(1) The proposals submitted shall be (1) The proposals submitted shall
evaluated on the basis of the be evaluated on the basis of the
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following award criteria:
(a) excellence;
(b) impact;
(c) quality and efficiency of the
implementation.
(2) The sole criterion of excellence
shall apply for proposals for ERC
frontier research actions.
(3) The work programme or work
plan shall lay down further details of
the application of the award criteria
laid down in paragraph 1, and
specify weightings and thresholds.
(4) Proposals shall be ranked
according to the evaluation results.
The selection shall be made on the
basis of this ranking.
(5) The Commission or the relevant
funding body shall verify the
financial capacity in advance only for
coordinators when the requested
funding from the Union for the
action is equal or superior to EUR
500 000, unless where, on the basis
of available information, there are
grounds to doubt the financial
capacity of the coordinator or other
participants.
(6) The financial capacity shall not
be verified for legal entities whose
viability is guaranteed by a Member
State or an associated country and
for higher and secondary education
establishments.
following award criteria:
(a) excellence;
(b) impact;
(c) quality and efficiency of the
implementation.
(d) Accessibility and design for
all users
(2) The sole criterion of excellence
shall apply for proposals for ERC
frontier research actions.
(3) The work programme or work
plan shall lay down further details
of the application of the award
criteria laid down in paragraph 1,
and specify weightings and
thresholds. Selection and award
criteria sould also include
references to the inclusion of
disability and participation of
persons with disabilities in the
project proposals.
(4) Proposals shall be ranked
according to the evaluation
results. The selection shall be
made on the basis of this ranking.
(5) The Commission or the
relevant funding body shall verify
the financial capacity in advance
only for coordinators when the
requested funding from the Union
for the action is equal or superior
to EUR 500 000, unless where, on
the basis of available information,
there are grounds to doubt the
financial
capacity
of
the
coordinator or other participants.
(6) The financial capacity shall not
be verified for legal entities whose
viability is guaranteed by a
Member State or an associated
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country and for
secondary
establishments.
higher and
education
Justification
In order to produce research which is useful and meaningful to society,
we believe that it is vital that persons with disabilities and their
representative organisations are fully included in Horizon 2020 decisionmaking process. This is crucial if we want to ensure that European
research delivers results in line with the needs of society and citizens,
especially persons with disabilities. No mention is currently made of
involving persons with disabilities in Horizon 2020 research and the
proposal should be amended as proposed. In order to be adequately
involved, organisations of persons with disabilities, as an underrepresented group in research and innovation programmes, also need to
benefit from capacity-building, i.e. initiatives aimed at widening
awareness and facilitating access to funding under Horizon 2020.
Adding the award criteria of accessibility and design for all users will
ensure consistency with the criteria define in the proposal for a Directive
of the European Parliament and of the Council on public procurement
(COM(2011)0896 final) in Article 66 award criteria (“if accessibility and
design for all are not taken into account at research and development
stage, it is very difficult to include them later”).
Article 15 Gender equality
Article 15 Gender equality and
non-discrimination
Horizon 2020 shall ensure the
effective promotion of gender
equality and the gender dimension
in research and innovation content.
1. Horizon 2020 shall ensure the
effective promotion of gender
equality and the gender dimension
in research and innovation content.
2. Horizon 2020 shall take
appropriate steps to prevent any
discrimination based on sex, racial
or ethnic origin, religion or belief,
disability, age or sexual orientation
in research and innovation
content, including measures to
remove barriers to accessibility for
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persons with disabilities.
Justification
Under article 21 of the European Charter of Fundamental Rights, article 2
of the Treaty on the EU, article 10 of the Treaty on the Functioning of the
EU, and the United-Nations Convention on the Rights of Persons with
Disabilities, the European institutions must ensure that no European
policy and legislation is discriminatory to European citizens on several
grounds, including disability.
Article 16 - Ethical principles
Article 16 - Ethical principles
(1) All the research and innovation
activities carried out under Horizon
2020 shall comply with ethical
principles and relevant national,
Union and international legislation,
including
the
Charter
of
Fundamental
Rights
of
the
European Union and the European
Convention on Human Rights and
its Supplementary Protocols.
(1) All the research and innovation
activities carried out under Horizon
2020 shall comply with ethical
principles and relevant national,
Union and international legislation,
including
the
Charter
of
Fundamental
Rights
of
the
European Union, and the European
Convention on Human Rights and
its Supplementary Protocols as well
Particular attention shall be paid to as the United-Nations Convention
the principle of proportionality, the on the Rights of Persons with
right to privacy, the right to the Disabilities.
protection of personal data, the Particular attention shall be paid to
right to the physical and mental the principle of proportionality, the
integrity of a person, the right to right to privacy, the right to the
non-discrimination and the need to protection of personal data, the
ensure high levels of human health right to the physical and mental
protection.
integrity of a person, the right to
non-discrimination based on sex,
racial or ethnic origin, religion or
belief, disability, age or sexual
orientation and the need to ensure
high levels of human health
protection.
Justification
On 23rd December 2010, the EU concluded the United-Nations
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Convention on the Rights of Persons with Disabilities which entered into
force on 22nd January 2011. It is the first Human Rights Treaty concluded
by the EU and, as a consequence, all EU policy and legislative acts must
comply with this international Convention.
In addition, European institutions must ensure that no European policy
and legislation is discriminatory to European citizens on several grounds,
including disability, as reffered under article 21 of the European Charter
of Fundamental Rights, article 2 of the Treaty on the EU and article 10 of
the Treaty on the Functioning of the EU.
Article 18 (new) – Civil Society
Organisations
(1) Particular attention shall be
paid to ensuring the adequate
participation of, and innovation
impact
on,
Civil
Society
Organisations, and in particular
organisations of persons with
disabilities, in Horizon 2020.
Quantitative
and
qualitative
assessments of Civil Society
Organisations participation shall be
undertaken as part of the
evaluation
and
monitoring
arrangements.
(2) Specific attention shall be
dedicated to initiatives aimed at
widening
awareness
and
facilitating access to funding under
Horizon 2020 of Civil Society
Organisations,
in
particular
organisations of persns with
disabilities. Horizon 2020 and other
Union
funding
programmes,
including the Structural Funds, shall
be used for that purpose.
(3) Civil society organisations, in
particular organisations of persons
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with disabilities, shall be consulted
during
the
implementation,
programming, monitoring and
evaluation of Horizon 2020.
Justification
In order to produce research which is useful and meaningful to society,
we believe that it is vital that persons with disabilities and their
representative organisations are fully included in Horizon 2020 decisionmaking process. This is crucial if we want to ensure that European
research delivers results in line with the needs of society and citizens,
especially persons with disabilities. No mention is currently made of
involving persons with disabilities in Horizon 2020 research and the
proposal should be amended as proposed. In order to be adequately
involved, organisations of persons with disabilities, as an underrepresented group in research and innovation programmes, also need to
benefit from capacity-building, i.e. initiatives aimed at widening
awareness and facilitating access to funding under Horizon 2020.
Article
22
Information, Article
22
Information,
communication and dissemination communication and dissemination
The European Commission shall
implement
information
and
communication actions concerning
Horizon
2020,
including
communication
measures
concerning supported projects and
results. Budget allocated to
communication under Horizon
2020 shall also contribute to
covering
the
corporate
communication of the Union's
political priorities as far as they are
related to the general objective of
this Regulation.
The European Commission shall
implement
information
and
communication actions concerning
Horizon
2020,
including
communication
measures
concerning supported projects and
results. Budget allocated to
communication under Horizon
2020 shall also contribute to
covering
the
corporate
communication of the Union's
political priorities as far as they are
related to the general objective of
this Regulation.
Activities
to
disseminate
information
and
carry
out
communication activities shall be
an integral task under all of the
Activities
to
disseminate
information
and
carry
out
communication activities shall be
an integral task under all of the
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actions supported by Horizon 2020. actions supported by Horizon 2020.
In addition, the following specific All
information
and
actions shall be supported:
communication actions concerning
2020,
including
(a) initiatives aimed at widening Horizon
measures
awareness and facilitating access to communication
funding under Horizon 2020, in concerning supported projects and
particular for those regions or types results, shall be made available
of
participant
that
are and accessible to persons with
disabilities on an equal basis with
underrepresented;
others.
(b) targeted assistance to projects
and consortia to provide them with In addition, the following specific
access to the necessary skills to actions shall be supported:
optimise the communication and (a) initiatives aimed at widening
dissemination of results;
awareness and facilitating access to
(c) actions which bring together funding under Horizon 2020, in
results from a range of projects, particular for those regions or types
participant
that
are
including those that may be funded of
including
from other sources, to provide underrepresented,
user-friendly databases and reports researchers and participants with
disabilities;
that summarise key findings;
(d) dissemination to policy makers,
including standardisation bodies, to
promote the use of policy relevant
results by the appropriate bodies at
international, Union, national and
regional level;
(b) targeted assistance to projects
and consortia to provide them with
access to the necessary skills to
optimise the communication and
dissemination of results;
(c) actions which bring together
results from a range of projects,
including those that may be funded
from other sources, to provide
user-friendly databases and reports
that summarise key findings;
(e) initiatives to foster dialogue and
debate on scientific, technological
and innovation related issues with
the public, and to take advantage
of social media and other
innovative
technologies
and (d) dissemination to policy makers,
methodologies;
including standardisation bodies, to
promote the use of policy relevant
results by the appropriate bodies at
international, Union, national and
regional level;
(e) initiatives to foster dialogue and
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debate on scientific, technological
and innovation related issues with
the public, in particular by
consulting
organisations
of
persons with disabilities, and to
take advantage of social media and
other innovative technologies and
methodologies;
Justification
Emphasis must be place on persons with disabilities and their
accessibility needs for the activities linked to information,
communication and dissemination of Horizon 2020. In addition, there is a
need for capacity-building as persons with disabilities and their
representative organisations are under-represented groups in research
and innovation programmes, as well as in dialogue and consultation with
the public. Persons with disabilities must also have equal access to
information and communication actions concerning Horizon 2020, all the
more so given that it is about public funding.
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Annex I Broad lines of the specific
objectives and activities – Part III
Societal challenges – 1. Health,
demographic change and wellbeing
Annex I Broad lines of the specific
objectives and activities – Part III
Societal challenges – 1. Health,
demographic change and wellbeing
1. Health, demographic change and 1. Health, demographic change and
wellbeing
wellbeing
1.1. Specific objective
1.1. Specific objective
The specific objective is to improve The specific objective is to improve
the lifelong health and wellbeing of the lifelong health and wellbeing of
all.
all.
Lifelong health and wellbeing for
all, high-quality and economically
sustainable health and care
systems, and opportunities for new
jobs and growth are the aims of
support to research and innovation
in response to this challenge and
will make a major contribution to
Europe 2020.
The cost of Union health and social
care systems is rising with care and
prevention measures in all ages
increasingly expensive, the number
of Europeans aged over 65
expected to nearly double from 85
million in 2008 to 151 million by
2060, and those over 80 to rise
from 22 to 61 million in the same
period. Reducing or containing
these costs such that they do not
become unsustainable depends in
part on ensuring the lifelong health
and wellbeing of all and therefore
on the effective prevention,
treatment and management of
disease and disability.
Chronic
conditions
such
Lifelong health and wellbeing for
all, high-quality and economically
sustainable health and care
systems, and opportunities for new
jobs and growth are the aims of
support to research and innovation
in response to this challenge and
will make a major contribution to
Europe 2020. In particular, persons
with disabilities are two to three
times
more
likely
to
be
unemployed than non-disabled
people. 38% of persons with
disabilities aged 16 - 34 across
Europe have an earned income,
compared to 64% of non-disabled
people.
The cost of Union health and social
care systems is rising with care and
prevention measures in all ages
increasingly expensive, the number
of Europeans aged over 65
expected to nearly double from 85
million in 2008 to 151 million by
2060, and those over 80 to rise
from 22 to 61 million in the same
as period. Reducing or containing
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cardiovascular
disease
(CVD),
cancer, diabetes, neurological and
mental
health
disorders,
overweight and obesity and various
functional limitations are major
causes of disability, ill-health and
premature death, and present
considerable social and economic
costs.
In the Union, CVD annually
accounts for more than 2 million
deaths and costs the economy
more than EUR 192 billion while
cancer accounts for a quarter of all
deaths and is the number one
cause of death in people aged 4564. Over 27 million people in the
Union suffer from diabetes and the
total cost of brain disorders
(including, but not limited to those
affecting mental health) has been
estimated at EUR 800 billion.
Environmental, life-style and socioeconomic factors are relevant in
several of these conditions with up
to one third of the global disease
burden estimated to be related to
these.
Infectious diseases (e.g. HIV/AIDS,
tuberculosis and malaria), are a
global concern, accounting for 41 %
of the 1.5 billion disability adjusted
life years worldwide, with 8 % of
these
in
Europe.
Emerging
epidemics and the threat of
increasing anti-microbial resistance
must also be prepared for.
Meanwhile, drug and vaccine
development
processes
are
becoming more expensive and less
these costs such that they do not
become unsustainable depends in
part on ensuring the lifelong health
and wellbeing of all and therefore
on the effective prevention,
treatment and management of
disease and disability impairments.
Costs
also
result
from
discrimination on the basis of
disability and from the creation of
an
environment
which
is
inaccessible to persons with
disabilities, and these costs also
need to be reduced or contained.
Chronic conditions such as
cardiovascular
disease
(CVD),
cancer, diabetes, neurological and
mental
health
disorders,
overweight and obesity and various
functional limitations are major
causes of impairments disability,
ill-health and premature death, and
present considerable social and
economic costs.
In the Union, CVD annually
accounts for more than 2 million
deaths and costs the economy
more than EUR 192 billion while
cancer accounts for a quarter of all
deaths and is the number one
cause of death in people aged 4564. Over 27 million people in the
Union suffer from diabetes and the
total cost of brain disorders
(including, but not limited to those
affecting mental health) has been
estimated at EUR 800 billion.
Environmental, life-style and socioeconomic factors are relevant in
several of these conditions with up
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effective.
Persistent
health
inequalities must be addressed,
and access to effective and
competent health systems must be
ensured for all Europeans.
1.2. Rationale and Union added
value
Disease and disability are not
stopped by national borders. An
appropriate
European
level
research and innovation response
can and should make a crucial
contribution to addressing these
challenges, deliver better health
and wellbeing for all, and position
Europe as a leader in the rapidly
expanding global markets for
health and wellbeing innovations.
to one third of the global disease
burden estimated to be related to
these.
Infectious diseases (e.g. HIV/AIDS,
tuberculosis and malaria), are a
global concern, accounting for 41 %
of the 1.5 billion disability adjusted
life years worldwide, with 8 % of
these
in
Europe.
Emerging
epidemics and the threat of
increasing anti-microbial resistance
must also be prepared for.
Meanwhile, drug and vaccine
development
processes
are
becoming more expensive and less
effective.
Persistent
health
inequalities must be addressed,
and access to effective and
The
response
depends
on competent health systems must be
excellence in research to improve ensured for all Europeans.
our fundamental understanding of 1.2. Rationale and Union added
health,
disease,
disability, value
development and ageing (including Disease and disability impairments
of life expectancy), and on the are not stopped by national
seamless
and
widespread borders. An appropriate European
translation of the resulting and level research and innovation
existing knowledge into innovative, response can and should make a
scalable and effective products, crucial contribution to addressing
strategies,
interventions
and these challenges, deliver better
services.
Furthermore,
the health and wellbeing for all, and
pertinence of these challenges position Europe as a leader in the
across Europe and in many cases, rapidly expanding global markets
globally, demands a response for
health
and
wellbeing
characterised by long term and innovations.
coordinated support for coresponse
depends
on
operation
between
excellent, The
multidisciplinary and multi-sector excellence in research to improve
our fundamental understanding of
teams.
health,
disease,
disability
Similarly, the complexity of the impairments, development and
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challenge and the interdependency
of its components demand a
European level response. Many
approaches, tools and technologies
have applicability across many of
the research and innovation areas
of this challenge and are best
supported at Union level. These
include the development of long
term cohorts and the conduct of
clinical trials, the clinical use of "omics" or the development of ICT
and their applications in healthcare
practice, notably e-health. The
requirements
of
specific
populations are also best addressed
in an integrated manner, for
example in the development of
stratified and/or personalised
medicine, in the treatment of rare
diseases, and in providing assisted
and independent living solutions.
To maximise the impact of Union
level actions, support will be
provided to the full spectrum of
research and innovation activities.
From basic research through
translation of knowledge to large
trials and demonstration actions,
mobilising private investment; to
public and pre- commercial
procurement for new products,
services, scalable solutions, which
are when necessary, interoperable
and
supported
by
defined
standards
and/or
common
guidelines.
This
co-ordinated,
European effort will contribute to
the ongoing development of the
ERA. It will also interface, as and
ageing
(including
of
life
expectancy), and the way in which
the environment discriminates and
causes disadvantages for persons
with disabilities, and on the
seamless
and
widespread
translation of the resulting and
existing knowledge into innovative,
scalable and effective products,
strategies,
interventions
and
services.
Furthermore,
the
pertinence of these challenges
across Europe and in many cases,
globally, demands a response
characterised by long term and
coordinated support for cooperation
between
excellent,
multidisciplinary and multi-sector
teams.
Similarly, the complexity of the
challenge and the interdependency
of its components demand a
European level response. Many
approaches, tools and technologies
have applicability across many of
the research and innovation areas
of this challenge and are best
supported at Union level. These
include the development of long
term cohorts and the conduct of
clinical trials, the clinical use of "omics" or the development of ICT
and their applications in healthcare
practice, notably e-health. The
requirements
of
specific
populations
are
also
best
addressed in an integrated manner,
for example in the development of
stratified and/or personalised
medicine, in the treatment of rare
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when appropriate, with activities
developed in the context of the
Health for Growth Programme and
the
European
Innovation
Partnership on Active and Health
Ageing.
1.3. Broad lines of the activities
Effective
health
promotion,
supported by a robust evidence
base, prevents disease, improves
wellbeing and is cost effective.
Health promotion and disease
prevention also depend on an
understanding of the determinants
of health, on effective preventive
tools, such as vaccines, on effective
health and disease surveillance and
preparedness, and on effective
screening programmes.
Successful efforts to prevent,
manage, treat and cure disease,
disability and reduced functionality
are
underpinned
by
the
fundamental understanding of their
determinants
and
causes,
processes and impacts, as well as
factors underlying good health and
wellbeing. Effective sharing of data
and the linkage of these data with
large scale cohort studies is also
essential, as is the translation of
research findings into the clinic, in
particular through the conduct of
clinical trials.
An increasing disease and disability
burden in the context of an aging
population places further demands
on health and care sectors. If
effective health and care is to be
diseases, and in providing assisted
and independent living solutions.
To maximise the impact of Union
level actions, support will be
provided to the full spectrum of
research and innovation activities.
From basic research through
translation of knowledge to large
trials and demonstration actions,
mobilising private investment; to
public and pre- commercial
procurement for new products,
services, scalable solutions, which
are when necessary, interoperable
and
supported
by
defined
standards
and/or
common
guidelines.
This
co-ordinated,
European effort will contribute to
the ongoing development of the
ERA. It will also interface, as and
when appropriate, with activities
developed in the context of the
Health for Growth Programme and
the
European
Innovation
Partnership on Active and Health
Ageing.
1.3. Broad lines of the activities
Effective
health
promotion,
supported by a robust evidence
base, prevents disease, improves
wellbeing and is cost effective.
Health promotion and disease
prevention also depend on an
understanding of the determinants
of health, on effective preventive
tools, such as vaccines, on effective
health and disease surveillance and
preparedness, and on effective
screening programmes.
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maintained for all ages, efforts are
required to improve decision
making
in
prevention
and
treatment provision, to identify and
support the dissemination of best
practice in the health and care
sectors, and to support integrated
care and the wide uptake of
technological, organisational and
social innovations empowering in
particular older persons as well as
disabled persons to remain active
and independent. Doing so will
contribute to increasing, and
lengthening the duration of their
physical, social, and mental wellbeing.
Successful efforts to prevent,
manage, treat and cure disease,
disability
impairments
and
reduced
functionality
are
underpinned by the fundamental
understanding
of
their
determinants
and
causes,
processes and impacts, including
disability
discrimination
and
barriers in social environments, as
well as factors underlying good
health and wellbeing. Effective
sharing of data and the linkage of
these data with large scale cohort
studies is also essential, as is the
translation of research findings into
the clinic, in particular through the
All of these activities shall be conduct of clinical trials, and socioundertaken in such a way as to economic research.
provide support throughout the An increasing disease and disability
research and innovation cycle, impairments burden in the context
strengthening the competitiveness of an aging population places
of the European based industries further demands on health and
and development of new market care sectors. If effective health and
opportunities.
care is to be maintained for all
Specific activities shall include: ages, efforts are required to
understanding the determinants of improve decision making in
and
treatment
health (including environmental prevention
and climate related factors), provision, to identify and support
improving health promotion and the dissemination of best practice
disease prevention; understanding in the health and care sectors, and
disease and improving diagnosis; to support integrated care and the
developing effective screening wide uptake of technological,
and
social
programmes and improving the organisational
empowering
in
assessment
of
disease innovations
susceptibility;
improving particular older persons as well as
surveillance and preparedness; disabled persons acquiring a
developing
better
preventive disability during their life to
vaccines; using in-silico medicine remain active and independent.
for improving disease management Doing so will contribute to
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and prediction; treating disease;
transferring knowledge to clinical
practice and scalable innovation
actions; better use of health data;
active ageing, independent and
assisted
living;
individual
empowerment
for
selfmanagement of health; promotion
of integrated care; improving
scientific tools and methods to
support
policy
making
and
regulatory needs; and optimising
the efficiency and effectiveness of
healthcare systems and reducing
inequalities by evidence based
decision making and dissemination
of best practice, and innovative
technologies and approaches.
increasing, and lengthening the
duration of their physical, social,
and mental well-being.
All of these activities shall be
undertaken in such a way as to
provide support throughout the
research and innovation cycle,
strengthening the competitiveness
of the European based industries
and development of new market
opportunities.
Specific activities shall include:
understanding the determinants of
health (including environmental,
social and climate related factors),
improving health promotion and
disease prevention; understanding
disease and improving diagnosis;
developing effective screening
programmes and improving the
assessment
of
disease
susceptibility;
improving
surveillance and preparedness;
developing
better
preventive
vaccines; using in-silico medicine
for improving disease management
and prediction; treating disease;
transferring knowledge to clinical
practice and scalable innovation
actions; better use of health data;
understanding of inequalities in
the type, appropriateness and
quality of health care and
treatment available to persons
with disabilities, including the
consequences for disabled people
(e.g. loss of independence);
Research on policies and practices
for user involvement in health care
provision;
active
ageing,
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independent and assisted living for
elderly persons and persons with
disabilities in particular those
requiring a high level of support;
individual empowerment for selfmanagement of health; promotion
of integrated care; improving
scientific tools and methods to
support policy making and
regulatory needs; and optimising
the efficiency and effectiveness of
healthcare systems and reducing
inequalities by evidence based
decision making and dissemination
of best practice, and innovative
technologies and approaches,
including studies on European
welfare
systems
and
their
effectiveness in satisfying the
diverse needs of persons with
disabilities including participation
and retention in employment.
Justification
Disability-related research funded by the EU must be based on the social
model of disability following the conclusion of the UNCRPD by the EU.
This model recognizes that disability stems primarily from the failure of
the social environment to adjust to the needs and aspirations of persons
with disabilities, rather than from the inability of people with
impairments to adapt to the environment. This is reflected in Article 1 of
the UNCRPD to which the EU is a party and, as a consequence, all EU
policy and legislative such as Horizon 2020 must comply with this
international Convention.
In addition, the specific objective of 1. Health, demographic change and
wellbeing encompasses research better growth and jobs, whereas there
are no broad lines activities highlighting this aspect in practice; hence the
suggestions for some research projects aiming at an inclusive growth.
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Annex I Broad lines of the specific
objectives and activities - Part III
Societal challenges - 6. Inclusive,
innovative and Secure Societies 6.3.1. Inclusive societies
Annex I Broad lines of the specific
objectives and activities - Part III
Societal challenges - 6. Inclusive,
innovative and Secure Societies 6.3.1. Inclusive societies
The aim is to enhance solidarity as
well as social, economic and
political inclusion and positive
inter-cultural dynamics in Europe
and with international partners,
through cutting- edge science and
interdisciplinarity,
technological
advances
and
organisational
innovations. Humanities research
can play an important role here.
Research
shall
support
policymakers in designing policies
that combat poverty and prevent
the development of various forms
of divisions, discriminations and
inequalities in European societies,
such as gender inequalities or
digital or innovation divides, and
with other world regions. It shall in
particular
feed
into
the
implementation and the adaptation
of the Europe 2020 strategy and
the broad external action of the
Union. Specific measures shall be
taken to unlock excellence in less
developed
regions,
thereby
widening participation in Horizon
2020.
The aim is to enhance solidarity as
well as social, economic and
political inclusion and positive
inter-cultural dynamics in Europe
and with international partners,
through cutting- edge science and
interdisciplinarity,
technological
advances
and
organisational
innovations. Humanities research
can play an important role here.
Research
shall
support
policymakers in designing policies
that combat poverty and prevent
the development of various forms
of divisions, discriminations and
inequalities in European societies,
such as gender inequalities,
discrimination based on sex, racial
or ethnic origin, religion or belief,
disability,
age
or
sexual
orientation, including measures to
remove barriers to accessibility for
persons with disabilities, or digital
or innovation divides, and with
other world regions. It shall in
particular
feed
into
the
implementation and the adaptation
of the Europe 2020 strategy and
the broad external action of the
The focus of activities shall be to:
Union. Specific measures shall be
(a) promote smart, sustainable and taken to unlock excellence in less
inclusive growth;
developed
regions,
thereby
(b) build resilient and inclusive widening participation in Horizon
2020.
societies in Europe;
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(c) strengthen Europe's role as a The focus of activities shall be to:
global actor;
(a) promote smart, sustainable and
(d) close the research and inclusive growth;
innovation divide in Europe.
(b) build resilient and inclusive
societies in Europe;
(c) strengthen Europe's role as a
global actor;
(d) close the research
innovation divide in Europe.
and
Justification
More than 15% of the European population is disabled. Fighting against
discriminations on the basis of disability must be clearly addressed in the
Horizon 2020 proposals (in line with article 21 of the European Charter of
Fundamental Rights, article 2 of the Treaty on the EU, article 10 of the
Treaty on the Functioning of the EU and the United-Nations Convention
on the Rights of Persons with Disabilities).
Annex I Broad lines of the specific
objectives and activities-Part III
Societal challenges - 6. Inclusive,
innovative and Secure Societies 6.3.2. Innovative societies
Annex I Broad lines of the specific
objectives and activities - Part III
Societal challenges - 6. Inclusive,
innovative and Secure Societies 6.3.2. Innovative societies
The aim is to foster the
development
of
innovative
societies and policies in Europe
through the engagement of
citizens, enterprises and users in
research and innovation and the
promotion of coordinated research
and innovation policies in the
context of globalisation. Particular
support will be provided for the
development of the ERA and the
development
of
framework
conditions for innovation.
The aim is to foster the
development
of
innovative
societies and policies in Europe
through the engagement of
citizens, including persons with
disabilities, enterprises and users
in research and innovation and the
promotion of coordinated research
and innovation policies in the
context of globalisation. Particular
support will be provided for the
development of the ERA and the
development
of
framework
conditions for innovation.
The focus of activities shall be to:
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(a) strengthen the evidence base The focus of activities shall be to:
and support for the Innovation (a) strengthen the evidence base
Union and ERA;
and support for the Innovation
(b) explore new forms of Union and ERA;
innovation,
including
social (b) explore new forms of
innovation and creativity;
innovation,
including
social
(c) ensure societal engagement in innovation and creativity;
research and innovation;
(c) ensure societal engagement, by
(d) promote coherent and effective consulting
civil
society
cooperation with third countries.
organisations,
in
particular
organisations of persons with
disabilities, in research and
innovation;
(d) promote coherent and effective
cooperation with third countries.
Justification
In order to produce research which is useful and meaningful to society,
we believe that it is vital that persons with disabilities and their
representative organisations are fully included in research projects
funded by Horizon 2020 and concerning them. This is key if we want to
ensure that European research delivers results in line with the needs of
society and citizens, especially persons with disabilities. At this stage, no
mention is currently made of involving persons with disabilities in
Horizon 2020 research and the proposal should be amended accordingly.
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3. APPENDIX
3.1.
EDF Position on Horizon 2020, June 2012, is available on EDF
website.
3.2.
EDF Amendments on Proposal for a Regulation laying down the
rules for participation and dissemination in “Horizon 2020 – the
Framework Programme for Research and Innovation (20142020)” (COM(2011)810final), September 2012, is available on EDF
website.
3.3.
EDF Amendments on Proposal for a Council Decision establishing
the Specific Programme implementing Horizon 2020- The
Framework Programme for Research and Innovation (2014-2020)
(COM(2011)811 final), September, is available on EDF website.
3.4.
EuRADE Policy Statement is available in word format on EuRADE
website.
3.5.
New Priorities for Disability Research in Europe, Report of the
European Disability Forum Consultation Survey “European
Research Agendas for Disability Equality” is available in PDF
format on the EuRADE website.
3.6.
Contact Person at the EDF Secretariat:
Nadège Riche, EDF Policy Officer
Tel: +32/0 2 282 46 05, Email: nadege.riche@edf-feph.org
More information about EDF is available on www.edf-feph.org.
Should you have any problems in accessing the document, please contact
the EDF Secretariat (T: +32/0 2 282 46 00).
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