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Health democracy in Europe: Cancer patient organization participation in health policy.
Souliotis, Kyriakos; Peppou, Lily E; Agapidaki, Eirini; Tzavara, Chara; Debiais, Dominique; Hasurdjiev, Stanimir; Sarkozy, Francois.
Afiliação
  • Souliotis K; Faculty of Social and Political Sciences, University of Peloponnese, Corinth, Greece.
  • Peppou LE; University Mental Health Research Institute, Athens, Greece.
  • Agapidaki E; Faculty of Social and Political Sciences, University of Peloponnese, Corinth, Greece.
  • Tzavara C; Department of Hygiene, Epidemiology and Medical Statistics, Centre for Health Services Research, Medical School, National & Kapodistrian University of Athens, Athens, Greece.
  • Debiais D; Europa Donna, Forum France, Paris, France.
  • Hasurdjiev S; Bulgarian National Patients' Organization, Sofia, Bulgaria.
  • Sarkozy F; FSNB Health & Care, Paris, France.
Health Expect ; 21(2): 474-484, 2018 04.
Article em En | MEDLINE | ID: mdl-29094422
BACKGROUND: Patient organization participation in health policy decision making is an understudied area of inquiry. A handful of qualitative studies have suggested that the growing number of patient organizations in Europe and their increasing involvement in policy issues do not result in high political effectiveness. However, existing research is largely country-specific. OBJECTIVE: To examine the degree and impact of cancer patient organization (CPO) participation in health policy decision making in EU-28 and to identify their correlates. METHODS: A total of 1266 members of CPOs participated in this study, recruited from a diversity of sources. CPO participation in health policy was assessed with the Health Democracy Index, a previously developed instrument measuring the degree and impact of patient organization participation in various realms of health policy. Additional questions collected information about participants' and the CPO's characteristics. Data were gleaned in the form of an online self-reported instrument. RESULTS: The highest degree of CPO participation was observed with respect to hospital boards, reforms in health policy and ethics committees for clinical trials. On the contrary, the lowest was discerned with regard to panels in other important health-related organizations and in the Ministry of Health. The reverse pattern of results was observed concerning the Impact subscale. As regards the correlates of CPO participation, legislation bore the strongest association with the Degree subscale, while organizational factors emerged as the most important variables with regard to the Impact subscale. CONCLUSIONS: Research findings indicate that a high degree of CPO participation does not necessarily ensure a high impact. Efforts to promote high and effective CPO participation should be geared towards the establishment of a health-care law based on patient rights as well as to the formation of coalitions among CPOs and the provision of training to its members.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Participação do Paciente / Tomada de Decisões / Política de Saúde Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Aged / Female / Humans / Male / Middle aged País como assunto: Europa Idioma: En Ano de publicação: 2018 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Participação do Paciente / Tomada de Decisões / Política de Saúde Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Aged / Female / Humans / Male / Middle aged País como assunto: Europa Idioma: En Ano de publicação: 2018 Tipo de documento: Article