Session Six Developing the AMD Action Plan

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Session SixDeveloping the AMD Action Plan
The AMD ACTION Summit has been made possible with
funding from Pfizer Ophthalmics
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Call to Action

• We call upon governments, medical, professional
  and consumer groups to recognise the increasing
  burden of AMD-related blindness and to address
  the crisis with urgency by promoting and
  supporting
• Education
• Prevention
• Early detection
• Timely access to treatment for all
• Rehabilitation and social services
• Research

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Call to Action Pledge

• PhotoCall delegates signing AMD Action
• Call to Action pledge board in Room C, 12.30pm

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Our Agenda

• Day Two
• Case Study Presentation Implementing a Call to
  Action
• Develop national AMD action plans
• How to drive earlier patient presentation
• How to improve patient management
• How to improve access to treatment and
  rehabilitation services
• Sign AMD Action pledge
• PhotoCall
• Main hall,1230

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Implementing a Call to Action Cittadinanzattiva
Chronic Illness

• Simona Sappia
• National Coalition of Chronic Illness Associations

The AMD ACTION Summit has been made possible with
funding from Pfizer Ophthalmics
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Cittadinanzattiva An Introduction

• A not-for-profit consumer organisation
• Founded in 1978
• Democratically run and independent
• Aim to promote civil participation and the
  protection of citizens rights

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Cittadinanzattiva, citizenship and healthcare

• CITIZENS playing a more active role in society
• Traditional vision voting and paying taxes
• New vision Individuals and organisations joining
  force to participate in policy-making
• Cittadinanzattiva (CA) works to empower citizens
  to assert and defend their greater rights and
  involve them in the Care of Common Goods
• In this example the Common Good is healthcare
  services and medicines

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Partners in health policy

• With CAs support - well informed citizens
• partners influencing health policy

• Active citizenship
• Self organisation
• Resource mobilisation
• Exercise power from
• protection of rights
• Care for common
• resources - healthcare

• Avoid traditional barriers
• Problem making instead
• of solving
• Lacking institutional or
• political definition
• Dependence
• Unanswered protests

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Structure of Cittadinanzattiva (CA)

• CA ordinary citizens, voluntary basis
• 74,000 members (individuals, associations,
  networks)
• Headquartered in Rome coordinates national and
  European activities
• Methodology solid, grassroots approach,
  publicity, involvement and creating a Call to
  Action

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Network of CA organisations

• Tribunal of Patients Rights
• The Citizens advocates (consumer rights)
• Justice for Rights network
• School of Active Citizenship
• Italian Chronic Illness Associations
• Active citizenship network the EU and
  international
• branch of CA
• (European Charter of Patient Rights)

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The Italian Coalition of Chronic Illness
Associations

• Established in 1996
• Composed of120 patients organisations
• Coordinated by executive board (13 organisations)
• Aims
• Develop awareness of its activities
• Produce civic information on chronic/rare disease
  policies
• Improve access to drugs, medical aids, disability
  benefits, home care, rehabilitation
• Decrease waiting lists

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The Cittadinanzattiva Key Success Factors

• Policy prioritisation tangible goals with
  legislative component
• Institutionalising patient organisations in
  national structures
• Data provision of information and civic
  evaluations of situations
• Mobilise define common policies enabling
  networking
• A professional voice trained patients effective
  spokespeople
• Financial stability sponsorship and funding
  opportunities, CSR

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Institutionalising patient organisations

• Aims
• To obtain constitutional or legislative
  recognition of
• importance of citizen participation in
  public policies
• To develop awareness on the role of active
  citizenship
• Patient participation to implement rights e.g
• Referendum on Art. 118 of Italian Costitution
• Art. 14, National Law - promoting civil
  participation on local health policy
• 36 Regional Laws influenced

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Article 118 outlining citizenship

• The state, regions, provinces, municipalities
  and towns favour autonomous initiatives of
  citizens individually and in association, to
  conduct activities in the general interest based
  on the principle of subsidiarity

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Coalition Calls to Action on Health Policy

• Reunification of Italys national health system
  different regional healthcare systems but same
  rights at risk
• Development of territory care (primary care,
  outpatient services, home care, respite care)
• Development of a real policy on chronic and rare
  disease
• Strengthening civic evaluation of quality of
  healthcare and health facilities

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Preparation to influence is key

• Information reliable, broad cross section
• Patients right centres, executive board
• Range of patient viewpoints, situations and
  examples
• Seek support opinion leaders and public
• Alliances and partnerships
• One voice, associations, scientific societies,
  industry
• Select forum roundtable, proposal
• Flexibility devise alternative solutions
• Using influence for lobbying

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Case Study A free access to drugs (2001)

• Used experience / viewpoints of patient
  organisations
• Dossier containing the main problems /data
• - Drug name, private cost for patients, health
  benefits QoL
• Formed partnerships (campaign support - CnAMC)
• Established relationship with influencers
• - The Italian Drug Agency
• Proposed alternative solutions
• Collected support from people via media
• - Dedicated website section, engaged new
  associations

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Results free access to drugs (2001)

• All of the following drugs / disease areas have
  improved patient access as a result of the
  Coalitions Call to Action
• - Glargine diabetics
• - Osteoporosis
• - Entacapone Parkinsons Disease
• - Some Orphan Drugs

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Case Study B Policy on chronic and rare diseases

• Public administrative activities for chronic and
  rare disease needed simplification
• Developed a national report to consultation (Jan
  2006)
• Identified obstacles surrounding disability
  benefits
• Average waiting time disability benefits 4 5
  years
• Chronic disease patients had to reassess
  disability annually
• During check economic and social facilities
  suspended
• Multiple applications needed to obtain disability
  benefit

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Results chronic and rare diseases

• Strong alliance developed CA asked 80 patient
  organisations to support political lobby
• Media Involvement topical articles, press
  interviews
• Collected support people and opinion leaders
• Lobbyed government pressurised parliament
• organisations bombarded politicians with
  correspondence

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Case Study C disability access in buildings

• Advertising campaign
• Established call-centre
• Partnered with supporting companies
• Campaign camper tour in 30 towns
• Monitored disabled access 374 buildings, 67
  towns, 23 provinces
• Devised specific actions gyms, theatres, schools
• Opened discussion with local and regional
  authorities
• In 9 months
• - 100 barriers to disabled access were removed
  
• - Another 100 obstacles addressed

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Routes to Success Data

• Produce information and civil evaluation of
  current situation
• Emotive arguments alone cannot win battle!
• The Call to Action needs
• Collect information from civic viewpoint
• To be evidence- or knowledge-based
• To describe inequalities clearly
• To put forward examples
• To identify specific facts
• To produce evidence and data

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Routes to Success Civic Information

• Activities-based monitoring
• Used experience of Civic Audit (at a national
  level)
• Monitored European Charter of Patient Rights
  (former 15 EU states)
• Charter of Patient Rights used for promotion
• Collected information from Patients rights
  centres
• National report on the state of health rights in
  Italy
• Collected information from CnAMC
• National report on chronic disease policies

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European Charter of Patient Rights

• Content
• Definition of 14 essential citizen rights to
  healthcare
• based on Nice Charter
• Privilege of citizens and organisations to
  protect these rights
• Aims
• To foster European public opinion on patients
  rights
• To promote higher degree of protection of rights
• To encourage public participation on healthcare
  policy

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European Charter 14 key patient rights

• Any European patient has the right
• To preventive measures
• Of access
• To information
• To consent
• To free choice
• To privacy and confidentiality
• To respect of patients time
• To the observance of quality standards
• To safety
• To innovation
• To avoid unnecessary suffering and pain
• To personalised treatment
• To complain
• To compensation

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European Charter background

• Drafted in 2002 - collaboration between ACN,
  Tribunal for Patients Rights and 12 citizen
  organisations
• Deals with health in Europe from different
  viewpoints general patients, Chronic diseases,
  consumers associations, etc.
• Include rights of patient and of citizens
  (including family members, vulnerable
  populations) with respect to healthcare

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Monitoring patient rights

• Active Citizenship Rights allow monitoring of
  patient rights
• Carried out in the former EU Member States
• 14 partner organisations
• 142 indicators correlated to the patients rights
• Monitoring objectives
• To produce information on execution of patients
  rights
• To foster active role of citizens - advocacy and
  policy making
• To empower citizens organisations dealing with
  health in Europe

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Main tools for monitoring

• Epidemiological data and statistics
• ? consultation of European and international
  databases
• Information and experts viewpoints
• ? questionnaire to 6 people in each country
• Partner organisations knowledge and experience
• ? self-administered questionnaire
• Existence of national legislation
• ? self-administered questionnaire
• Hospital checklist
• ? direct observation three main hospitals of
  each European capital

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National implementation of Call to Action

• In March 2004, Cittadinanzattiva signed an
  agreement with the Lazio region in Italy, in
  which the Charter becomes the basis to set forth
  directives and standards for the annual review of
  the General Directors (of health clinics and
  hospitals) activity from the publics
  perspective.

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Mobilisation of Call to Action

• Use of IT (networking strategies)
• - E-mail and mailing lists
• - Development of accessible, well-built website
• - Creation and distribution of e-newsletters
• - Realisation of e-consultations
• Strategies to involve citizens and volunteers
• To define and execute Call to Action
• Develop a capacity-building program
• - Train leaders and volunteers on protection of
  health
• -Provide tools and communications on the issues

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Joining Forces a Day of Patients Rights

• CA and Italian Chronic Illness Associations are
  organising
• THE EUROPEAN DAY OF PATIENTS RIGHTS
• Celebrated on same date by all EU and candidate
  countries (NE)
• Monitors Charters rights to all NE countries
• Use collected data to improve respect of
  patients rights
• Produces citizens data on patients rights in
  all NE countries
• Creates partnerships between citizen
  organisations, public institutions and other
  healthcare stakeholders in NE

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European Day of Patients Rights

• Project will follow 2 steps
• 2006 Organisation of a conference on Patients
  Rights in the European Parliament (EP) on 30
  November 2006
• 2007-2008 Celebration of the European Day in all
  Member States and candidate countries and
  extension of the monitoring

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Closing remarks and questions

• Thank you for your attention!
• For further information please contact
• Simona Sappia
• Tel. [phone]
• s.sappia_at_cittadinanzattiva.it

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Thank You

• Questions?

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Breakout Groups

• What more must be done to stop
• people going blind through AMD?

Room 3 The Netherlands Israel Greece Croatia
Room 1 Germany, France, Switzerland, Austria
Room 2 UK and South Africa
Room 4 Italy, Portugal Brazil, Mexico, Greece
Room 7 Asia Pacific
Room 5 Canada
Room 6 USA
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Targeting the Right Audiences
Eg How to drive earlier patient presentation
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Housekeeping

• Notes will be written up by Edelman and
  circulated
• Please develop notes that can easily read and
  understood for transcribing
• The conference organisers will let us know when
  it is time for refreshment breaks and lunch

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Refreshment Break(downstairs)
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Taking Our Call to Action Back Home
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Taking Our Call to Action Back Home

• Workshop Plan Priorities

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Housekeeping

• Workshop facilitators to hand in notes to a
  member of Edelman
• Presentations will be available on AMD ACTION
  registration website
• Bus leaving MCE now to take you back to hotels
• And finally.

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• Thank You!