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Hered from Bosnia and Herzegovina, Croatia, Kosovo, FYROM, Montenegro and Serbia

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Hered from Bosnia and Herzegovina, Croatia, Kosovo, FYROM, Montenegro and Serbia Healthcare Systems, Patients’ Rights and Patient Organisations’ Involvement in Healthcare Policy and Programme Development: A Situational Analysis of the Western Balkans - 2017 August 2017 Contents 1. Background and Methodology........................................................................................................ 4 2. Scope and Limitations ..................................................................................................................... 6 3. Key Findings in a Regional Context ................................................................................................. 6 4. An Insight into Healthcare Systems and Protection of Patients’ Rights in Balkans Countries........ 8 4.1. Bosnia and Herzegovina .......................................................................................................... 8 4.2. Croatia ................................................................................................................................... 12 4.3. Kosovo ................................................................................................................................... 15 4.4. FYROM .................................................................................................................................. 18 4.5. Montenegro .......................................................................................................................... 20 4.6. Serbia .................................................................................................................................... 23 5. Overview of Capacities of Patients’ Organisations to Participate in Healthcare Policy and Programme Development in the Western Balkans Countries .............................................................. 26 5.1. Disease-Specific Patient Organisations: Presence, Governance & Capacities ...................... 27 5.2. National Patient Coalitions/Umbrella Organisations: Presence, Governance & Capacities. 33 5.3. Capacity Building needs and Regional Cooperation ............................................................. 36 6. Recommendations ........................................................................................................................ 39 Bibliography .......................................................................................................................................... 41 Author: Selena Imerovic Hodzic, EPF Capacity Building Programme Consultant Publication date: August 2017 2 Healthcare Systems, Patients’ Rights and Patient Organisations’ Involvement in Healthcare Policy and Programme Development: A Situational Analysis of the Western Balkans - 2017 List of abbreviations Abbreviation Description BIRN Balkan Investigative Reporting Network CSOs Civil Society Organisation(s) DALY Disability-Adjusted Life Year EC European Commission ECA Europe and Central Asia EPF European Patients’ Forum EU European Union EU-SILC The EU Statistics on Income and Living Conditions GDP Gross Domestic Product HIV Human Immunodeficiency Virus HDI Human Development Index IT Information Technologies LGBT Lesbian, Gay, Bisexual, and Transgender N/A Not available NATO North Atlantic Treaty Organization NGO Non-governmental Organisation PO(s) Patient Organisation(s) WHO World Health Organisation 3 Healthcare Systems, Patients’ Rights and Patient Organisations’ Involvement in Healthcare Policy and Programme Development: A Situational Analysis of the Western Balkans - 2017 The EPF (The European Patient Forum) Capacity Building Programme was designed in 2012 with the aim of supporting patient organisations to strengthen their role as equal players in the healthcare environment. The programme is carried out in Bulgaria, Hungary, Poland, Romania and Slovakia. In 2013, the EPF Secretariat embarked upon a journey towards a much stronger, and more representative patient movement in the Western Balkans countries, and on 28 and 29 October organised the first EPF Regional Advocacy Seminar: “How to strengthen the patients’ perspective at EU and national level?” in Zagreb, Croatia. The seminar offered, among other objectives, the opportunity for around 50 participants to learn and share experiences about the implications of some key EU policy initiatives for patients and national healthcare systems, as well as to strengthen patient organisations’ advocacy skills to increase their impact in policy and decision-making at national and European level. In a continuous effort to support and strengthen the patients’ movement, EPF opted to conduct this regional situational analysis in late 2016. The intent of this situational analysis is to: • Understand the healthcare systems and the environment in which they function in each country targeted by this analysis; • Identify the perceptions of patient organisations’ representatives with regards to the quality of healthcare service delivery and protection of their rights in each country; • Map the main patient organisations that could be important partners for EPF; • Assess the capacity level of patient coalitions/umbrella organisations and disease-specific organisations to take part in the development of health care policies and programmes; • Inform and guide the EPF Secretariat in the development of appropriate response in the context of capacity building programme from short-term to long-term basis. This situational analysis report contains the main findings gathered from Bosnia and Herzegovina, Croatia, Kosovo, FYROM, Montenegro and Serbia. To reach a high number of geographical representations, the research targeted: • Participants from the Western Balkans Regional Conference: “Protection of Patients’ Rights: Role of Institutions and Associations” organised on 17 and 18 October 2016; • Two EPF member organisations from the Western Balkan region: o KUZ – Croatian Coalition of Association in Healthcare (EPF Full member); o APO – Alliance of Patient Organisations, FRYOM (EPF Associate member); • Representatives of disease-specific patient organisations and/or national patient coalitions/umbrella organisations from Bosnia, Kosovo, Montenegro and Serbia; • Wider patient community – contacts gathered from the EPF Regional Advocacy Seminar participants list, the Association of Innovative Pharmaceutical Manufacturers (Bosnia and Herzegovina and Croatia), the Pharmaceutical companies Pfizer and Celgene International (Slovenia) and the Medical Clinical Centre (Montenegro). 4 Healthcare Systems, Patients’ Rights and Patient Organisations’ Involvement in Healthcare Policy and Programme Development: A Situational Analysis of the Western Balkans - 2017 The situational analysis methodological framework consisted of following: Method Description Period Desk research that included the collection of both Late 2016 – Early 2017 qualitative and quantitative data about the current healthcare system and patients’ rights in each country Individual and/or group interviews conducted with Late 2016 – Early 2017 representatives of government health offices, patient organisations, pharmaceutical associations and companies that assisted in assessing the information gathered through the desk research, including the implications of current healthcare system on patients and their organisations Survey/Questionnaires findings gathered and analysed February – March 2017 about the role, representativeness, credibility and sustainability of key patient coalitions/umbrella organisations and patient disease-specific organisations in each targeted country Furthermore, the analysis is divided in two main parts: i) analysis of the wider healthcare situations, including patients’ satisfaction and protection of patients’ rights and ii) the situation of patients’ movement in each country with the focus on their capacities to act as equal players in the healthcare environment. 1) The analysis of the wider healthcare system, where information is available, considers the health status information of targeted countries (ex. population, life expectancy, mortality, major causes of death etc.), basic political and socio-economic situation that impacts the overall healthcare functioning, general overview of healthcare reforms, including the healthcare policy and legal framework, the organisation of the healthcare system, healthcare financing as well as patients’ satisfaction and insight into the protection of patients’ rights in each country. 2) The analysis of the roles, representativeness, credibility and sustainability of patient organisations covered the guided questions about following issues: number/presence of active patient disease- specific organisations and national coalitions/umbrella organisations, proportion of young patients and women in decision making within active organisations, the governance of patient disease-specific organisations, their organisational and advocacy capacities, the governance and capacities of national patient coalitions/umbrella organisations to take part in the development of laws, policies and programmes, capacity building needs, and potential benefits of the cooperation among patient organisations at the regional level. The report is drawn up by EPF Capacity Building Programme Consultant Selena Imerovic Hodzic. 5 Healthcare Systems, Patients’ Rights and Patient Organisations’ Involvement in Healthcare Policy and Programme Development: A Situational Analysis of the Western Balkans - 2017 Given the number of countries within the Western Balkan region, extensive efforts were made to ensure that the research, including the qualitative
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