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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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Vol. 19. Núm. 2.
Páginas 120-126 (marzo - abril 2005)
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Vol. 19. Núm. 2.
Páginas 120-126 (marzo - abril 2005)
Originales
Open Access
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
Visitas
1044
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
Este artículo ha recibido

Under a Creative Commons license
Información del artículo
Resumen
Objetivos

Explorar las Organizaciones Representativas de Pacientes (ORP) y sus aspiraciones respecto a la participación de pacientes y usuarios en las decisiones que les afectan.

Métodos

Encuesta a informadores clave de 21 ORP, mediante cuestionario semiestructurado.

Resultados

La mayoría de las ORP entrevistadas son asociaciones de carácter privado, de ámbito regional o estatal. Sus objetivos son la mejora de la calidad de vida y la defensa de los intereses de afectados y familiares, y realizan actividades de selección y difusión de información y prestación de servicios sustitutivos no proporcionados por la administración. Sus principales vías de comunicación son el correo electrónico, las reuniones presenciales y los foros. El colectivo de profesionales sanitarios se considera el agente más relevante por la mayoría de las organizaciones. Las fuentes de financiación más citadas son las cuotas de los asociados, subvenciones públicas y aportaciones de la industria farmacéutica. La implicación del usuario para mejorar la calidad asistencial fue la razón más valorada para la corresponsabilización del paciente. La creación de un espacio legal para que la voz de los pacientes se tenga en cuenta de manera demostrable fue el escenario más valorado de entre los propuestos.

Conclusiones

Las ORP pueden tener un papel importante en la provisión de información a los pacientes y a los profesionales sanitarios, en la promoción de los autocuidados y en la mejora de la atención, aspectos que requieren un compromiso creíble de las autoridades sanitarias en la facilitación de mecanismos y espacios de decisión y elección.

Palabras clave:
Organizaciones de pacientes
Participación del paciente
Política sanitaria
Organización de los servicios sanitarios
Abstract
Objectives

To explore patient organizations and their scope in terms of patient and user participation in decisions affecting their health.

Methods

Semi-structured questionnaire survey of key informants from 21 patient organizations.

Results

Most of the patient organizations were regional or national private organizations. Their main objectives include improving quality of life and representing the interests of patients and their families, developing information triage and dissemination activities, and providing additional services not offered by the public health service. The main methods of communicating with members were electronic mail, open meetings and forums. Most patient organizations considered health professionals to be the most important group of stakeholders. The sources of funding most frequently quoted were membership fees, public grants and contributions from the pharmaceutical industry. 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. The proposed future scenario that received the most support was the creation of a legal forum in which the patient's voice could be heard and demonstrably taken into account.

Conclusions

Patient organizations can play an important role in providing patients and health professionals with information, promoting self care and improving the effectiveness of health care. These features require visible commitment by the health authorities to facilitate opportunities for patient decisions and choice within the system.

Key words:
Patient organizations
Patient participation
Health policy
Health care delivery
El Texto completo está disponible en PDF
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Este trabajo ha sido realizado en el marco de un proyecto de investigación financiado mediante un contrato con la Agencia de Calidad del Ministerio de Sanidad y Consumo.

Copyright © 2005. Sociedad Española de Salud Pública y Administración Sanitaria
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