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Health democracy in Europe: Cancer patient organization participation in health policy

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 polit...

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Autores principales: Souliotis, Kyriakos, Peppou, Lily E., Agapidaki, Eirini, Tzavara, Chara, Debiais, Dominique, Hasurdjiev, Stanimir, Sarkozy, Francois
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867319/
https://www.ncbi.nlm.nih.gov/pubmed/29094422
http://dx.doi.org/10.1111/hex.12638
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author Souliotis, Kyriakos
Peppou, Lily E.
Agapidaki, Eirini
Tzavara, Chara
Debiais, Dominique
Hasurdjiev, Stanimir
Sarkozy, Francois
author_facet Souliotis, Kyriakos
Peppou, Lily E.
Agapidaki, Eirini
Tzavara, Chara
Debiais, Dominique
Hasurdjiev, Stanimir
Sarkozy, Francois
author_sort Souliotis, Kyriakos
collection PubMed
description 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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spelling pubmed-58673192018-04-01 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 Health Expect Original Research Papers 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. John Wiley and Sons Inc. 2017-11-01 2018-04 /pmc/articles/PMC5867319/ /pubmed/29094422 http://dx.doi.org/10.1111/hex.12638 Text en © 2017 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution (http://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Research Papers
Souliotis, Kyriakos
Peppou, Lily E.
Agapidaki, Eirini
Tzavara, Chara
Debiais, Dominique
Hasurdjiev, Stanimir
Sarkozy, Francois
Health democracy in Europe: Cancer patient organization participation in health policy
title Health democracy in Europe: Cancer patient organization participation in health policy
title_full Health democracy in Europe: Cancer patient organization participation in health policy
title_fullStr Health democracy in Europe: Cancer patient organization participation in health policy
title_full_unstemmed Health democracy in Europe: Cancer patient organization participation in health policy
title_short Health democracy in Europe: Cancer patient organization participation in health policy
title_sort health democracy in europe: cancer patient organization participation in health policy
topic Original Research Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867319/
https://www.ncbi.nlm.nih.gov/pubmed/29094422
http://dx.doi.org/10.1111/hex.12638
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