Published on January 10, 2009
Session SixDeveloping the AMD Action Plan : Session SixDeveloping the AMD Action Plan The AMD ACTION Summit has been made possible with funding from Pfizer Ophthalmics Call to Action : 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 Call to Action Pledge : Call to Action Pledge PhotoCall – delegates signing AMD Action “Call to Action” pledge board in Room C, 12.30pm 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 Our Agenda Implementing a Call to Action: Cittadinanzattiva & Chronic Illness : 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 Cittadinanzattiva: An Introduction : 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 citizen’s rights Cittadinanzattiva, citizenship and healthcare : 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 Partners in health policy : Partners in health policy With CA’s 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 Structure of Cittadinanzattiva (CA) : 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’ Network of CA organisations : Network of CA organisations Tribunal of Patients’ Rights The Citizen’s 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) The Italian Coalition of Chronic Illness Associations : 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 : 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 The Cittadinanzattiva: Key Success Factors Institutionalising patient organisations : 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 Article 118: outlining citizenship : 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” Coalition ‘Calls to Action’ on Health Policy : Coalition ‘Calls to Action’ on Health Policy Reunification of Italy’s 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 Preparation to influence is key : Preparation to influence is key Information: reliable, broad cross section Patient’s 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 Case Study A: free access to drugs (2001) : 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 Results: free access to drugs (2001) : Results: free access to drugs (2001) All of the following drugs / disease areas have improved patient access as a result of the Coalition’s ‘Call to Action’: - Glargine – diabetics - Osteoporosis - Entacapone – Parkinson’s Disease - Some Orphan Drugs Case Study B: Policy on chronic and rare diseases : 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 Results: chronic and rare diseases : 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 Case Study C: disability access in buildings : 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 Routes to Success: Data : 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 Routes to Success: Civic Information : 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 Patient’s rights centres National report on the state of health rights in Italy Collected information from CnAMC National report on chronic disease policies European Charter of Patient Rights : 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 European Charter: 14 key patient rights : 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 European Charter: background : 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 Monitoring patient rights : 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 Main tools for monitoring : 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 National implementation of Call to Action : 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 public’s perspective.” Mobilisation of Call to Action : 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 Joining Forces: a Day of Patients’ Rights : 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 Charter’s 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 European Day of Patients’ Rights : 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 Closing remarks and questions : Closing remarks and questions Thank you for your attention! For further information please contact: Simona Sappia Tel. +390636718394 firstname.lastname@example.org Thank You : Thank You Questions? Breakout Groups : Breakout Groups What more must be done to stop people going blind through AMD? Room 1 Germany, France, Switzerland, Austria Room 2 UK and South Africa Room 3 The Netherlands Israel Greece Croatia Room 4 Italy, Portugal Brazil, Mexico, Greece Room 5 Canada Room 6 USA Room 7 Asia Pacific Targeting the Right Audiences : Targeting the Right Audiences Eg How to drive earlier patient presentation Housekeeping : 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 Refreshment Break(downstairs) : Refreshment Break(downstairs) Taking Our Call to Action Back Home : Taking Our Call to Action Back Home Taking Our Call to Action Back Home : Taking Our Call to Action Back Home Workshop Plan Priorities Housekeeping : 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…. Slide 42: Thank You!