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        "resumen" => "<span class="elsevierStyleSectionTitle">Objetivos</span><p class="elsevierStyleSimplePara elsevierViewall">Explorar las Organizaciones Representativas de Pacientes &#40;ORP&#41; y sus aspiraciones respecto a la participaci&#243;n de pacientes y usuarios en las decisiones que les afectan&#46;</p> <span class="elsevierStyleSectionTitle">M&#233;todos</span><p class="elsevierStyleSimplePara elsevierViewall">Encuesta a informadores clave de 21 ORP&#44; mediante cuestionario semiestructurado&#46;</p> <span class="elsevierStyleSectionTitle">Resultados</span><p class="elsevierStyleSimplePara elsevierViewall">La mayor&#237;a de las ORP entrevistadas son asociaciones de car&#225;cter privado&#44; de &#225;mbito regional o estatal&#46; Sus objetivos son la mejora de la calidad de vida y la defensa de los intereses de afectados y familiares&#44; y realizan actividades de selecci&#243;n y difusi&#243;n de informaci&#243;n y prestaci&#243;n de servicios sustitutivos no proporcionados por la administraci&#243;n&#46; Sus principales v&#237;as de comunicaci&#243;n son el correo electr&#243;nico&#44; las reuniones presenciales y los foros&#46; El colectivo de profesionales sanitarios se considera el agente m&#225;s relevante por la mayor&#237;a de las organizaciones&#46; Las fuentes de financiaci&#243;n m&#225;s citadas son las cuotas de los asociados&#44; subvenciones p&#250;blicas y aportaciones de la industria farmac&#233;utica&#46; La implicaci&#243;n del usuario para mejorar la calidad asistencial fue la raz&#243;n m&#225;s valorada para la corresponsabilizaci&#243;n del paciente&#46; La creaci&#243;n de un espacio legal para que la voz de los pacientes se tenga en cuenta de manera demostrable fue el escenario m&#225;s valorado de entre los propuestos&#46;</p> <span class="elsevierStyleSectionTitle">Conclusiones</span><p class="elsevierStyleSimplePara elsevierViewall">Las ORP pueden tener un papel importante en la provisi&#243;n de informaci&#243;n a los pacientes y a los profesionales sanitarios&#44; en la promoci&#243;n de los autocuidados y en la mejora de la atenci&#243;n&#44; aspectos que requieren un compromiso cre&#237;ble de las autoridades sanitarias en la facilitaci&#243;n de mecanismos y espacios de decisi&#243;n y elecci&#243;n&#46;</p>"
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        "resumen" => "<span class="elsevierStyleSectionTitle">Objectives</span><p class="elsevierStyleSimplePara elsevierViewall">To explore patient organizations and their scope in terms of patient and user participation in decisions affecting their health&#46;</p> <span class="elsevierStyleSectionTitle">Methods</span><p class="elsevierStyleSimplePara elsevierViewall">Semi-structured questionnaire survey of key informants from 21 patient organizations&#46;</p> <span class="elsevierStyleSectionTitle">Results</span><p class="elsevierStyleSimplePara elsevierViewall">Most of the patient organizations were regional or national private organizations&#46; Their main objectives include improving quality of life and representing the interests of patients and their families&#44; developing information triage and dissemination activities&#44; and providing additional services not offered by the public health service&#46; The main methods of communicating with members were electronic mail&#44; open meetings and forums&#46; Most patient organizations considered health professionals to be the most important group of stakeholders&#46; The sources of funding most frequently quoted were membership fees&#44; public grants and contributions from the pharmaceutical industry&#46; The most important factor for enhancing patient co-responsibility was considered to be involving patients in health care as a way to improve the quality of the heath services&#46; The proposed future scenario that received the most support was the creation of a legal forum in which the patient&#39;s voice could be heard and demonstrably taken into account&#46;</p> <span class="elsevierStyleSectionTitle">Conclusions</span><p class="elsevierStyleSimplePara elsevierViewall">Patient organizations can play an important role in providing patients and health professionals with information&#44; promoting self care and improving the effectiveness of health care&#46; These features require visible commitment by the health authorities to facilitate opportunities for patient decisions and choice within the system&#46;</p>"
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Originales
Organización, funcionamiento y expectativas de las organizaciones representativas de pacientes. Encuesta a informadores clave
Organization, functioning and expectations of patient organizations. Survey of key informers
Aníbal García-Sempere
Autor para correspondencia
agarcia@fundsis.net

Correspondencia: Aníbal García-Sempere. Fundación Salud Innovación y Sociedad. Gran Via de les Corts Catalanes, 764, 8.ª planta. 08012 Barcelona. España.
, Juan José Artells
Fundación Salud, Innovación y Sociedad. Barcelona. España
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        "resumen" => "<span class="elsevierStyleSectionTitle">Objectives</span><p class="elsevierStyleSimplePara elsevierViewall">To explore patient organizations and their scope in terms of patient and user participation in decisions affecting their health&#46;</p> <span class="elsevierStyleSectionTitle">Methods</span><p class="elsevierStyleSimplePara elsevierViewall">Semi-structured questionnaire survey of key informants from 21 patient organizations&#46;</p> <span class="elsevierStyleSectionTitle">Results</span><p class="elsevierStyleSimplePara elsevierViewall">Most of the patient organizations were regional or national private organizations&#46; Their main objectives include improving quality of life and representing the interests of patients and their families&#44; developing information triage and dissemination activities&#44; and providing additional services not offered by the public health service&#46; The main methods of communicating with members were electronic mail&#44; open meetings and forums&#46; Most patient organizations considered health professionals to be the most important group of stakeholders&#46; The sources of funding most frequently quoted were membership fees&#44; public grants and contributions from the pharmaceutical industry&#46; The most important factor for enhancing patient co-responsibility was considered to be involving patients in health care as a way to improve the quality of the heath services&#46; The proposed future scenario that received the most support was the creation of a legal forum in which the patient&#39;s voice could be heard and demonstrably taken into account&#46;</p> <span class="elsevierStyleSectionTitle">Conclusions</span><p class="elsevierStyleSimplePara elsevierViewall">Patient organizations can play an important role in providing patients and health professionals with information&#44; promoting self care and improving the effectiveness of health care&#46; These features require visible commitment by the health authorities to facilitate opportunities for patient decisions and choice within the system&#46;</p>"
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ISSN: 02139111
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