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Sistemas De Usuario En La Gestión Online De Contenidos Biomédicos

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Sistemas De Usuario En La Gestión Online De Contenidos Biomédicos Toni González-Pacanowski y Pablo Medina-Aguerrebere Sistemas de usuario en la gestión online de contenidos biomédicos Por Toni González-Pacanowski y Pablo Medina-Aguerrebere Resumen: Las demandas informativas de los ciudadanos so- bre la salud han llevado a varias organizaciones a elaborar sistemas personalizados de autogestión de la información médica que facilitan la administración de esta información a ciudadanos, profesionales de la salud, instituciones públi- cas, empresas y grupos de pacientes. Gracias a las nuevas tecnologías, el paciente asume un rol activo que se plasma en la consulta en internet de distintos aspectos relacionados con la salud, lo que hace surgir un debate sobre las acreditacio- nes de los sitios web que difunden información sanitaria. En este marco, Google, con las aplicaciones Google Health y Flu Trends; y Microsoft, con la utilidad Microsoft HealthVault, se convierten en los máximos exponentes de los gestores de in- formación médica. Toni González-Pacanowski Pablo Medina-Aguerre- Palabras clave: Autogestión, Información, Salud, Tecnología, es doctor en comunicación bere es licenciado en publi- por la Univ. Pompeu Fabra cidad y relaciones públicas Internet. (UPF) y profesor de Tecno- por la Universidad de Na- Title: User systems in online management of bi- logía de la Información y varra, diploma en Dirección Producción Periodística de la de Cuentas Publicitarias por omedical content Univ. CEU Abat Oliba de Bar- la Escuela Superior de Pu- celona. Experto en comunica- blicidad de París, y diploma Abstract: Public demand for information about health mat- ción interactiva y consultor de de Estudios Avanzados por ters has led several organizations to develop custom systems nuevas tecnologías en el IESE la Universidad de Navarra. for self-management of medical information. These systems Business School de Barcelo- Ha trabajado cuatro años facilitate the management of this information by the public, na. Colabora con DigiDoc en el sector de la comunica- de la UPF y con el Observ. ción de salud y actualmente health care professionals, public institutions, companies and Comunicación y Salud de la prepara un doctorado sobre groups of patients. Thanks to new technologies, patients are Univ. Autònoma de Barce- este tema en la citada Uni- taking an active role in searching the internet with queries lona. Es co-autor del libro versidad de Navarra, don- about health-related issues, which gives rise to a debate about “Web semántica y sistemas de además ejerce labores de información documental” docentes en el campo de la the accreditations of web pages that disseminate health in- (ed. Trea) con un capítulo de- comunicación institucional y formation. In this context, Google, with applications such as dicado a salud y medicina. del marketing. Google Health, Flu Trends and Android, and Microsoft, with its HealthVault utility, have become the maximum exponents of medical information management software. Keywords: Self-management, Information, Health, Technology, Internet. González-Pakanowski, Toni; Medina-Aguerrebere, Pablo. “Sistemas de usuario en la gestión online de contenidos biomédicos”. El profesional de la información, 2010, mayo-junio, v. 19, n. 3, pp. 260-268. DOI: 10.3145/epi.2010.may.06 1. Introducción un aumento progresivo del uso de internet como fuente El aumento de las necesidades sanitarias conlleva informativa y canal de comunicación. un incremento de la demanda de información hiperseg- El fenómeno de la sociedad sobre-informada con mentada y centrada en consultas cada vez más especí- altas dosis de infoxicación es un hecho en el caso de la ficas. salud y de la medicina. Internet convierte en iguales a Factores como las nuevas posibilidades de la ge- expertos y a otros que no lo son, y aloja a «especialis- nómica y la tecnología sanitaria de última generación, tas» que supuestamente están en condiciones profesio- la aparición de tratamientos cada vez con mejor coste- nales y legales de atender a pacientes y usuarios de la efectividad y la confirmación de que la población mun- sanidad. Bajo un sello de calidad privado exhibido en dial es susceptible de padecer una pandemia suponen un banner, como el HonCode que concede la Health on Artículo recibido el 20-11-09 Aceptación definitiva: 08-02-10 260 El profesional de la información, v. 19, n. 3, mayo-junio 2010 Sistemas de usuario en la gestión online de contenidos biomédicos the Net Foundation de Suiza1, puede existir cierto com- Éstas y otras fuentes que utilizan los profesionales promiso ético, pero esto no evita el fraude o la mala están disponibles para el público y por tanto, constitu- praxis, ni siquiera acredita para el ejercicio de la medi- yen un motor de activación de la propia red social que cina ni garantiza los derechos de los pacientes. Es más, la utiliza para confirmar e intercambiar información. este tipo de sellos de acreditación, supuestamente inde- Según Brownstein, Freifeld y Madoff (2009), algunas pendientes y profesionales, pueden desnaturalizarse y de estas fuentes de libre consulta y que los portales de convertirse más en un elemento de imagen de marca y autogestión de la información médica pueden llegar a credibilidad comercial que en una garantía. La reputa- utilizar son las siguientes: ción y el prestigio de la atención médica siguen siendo – Promed-mail el sello distintivo en internet y en cualquier medio. http://www.promedmail.org En este entorno de riesgo informativo y documen- – Global public health intelligence network (Gphin) tal, la llegada de los sistemas de autogestión de la infor- http://www.phac-aspc.gc.ca/media/nr-rp/2004/2004_ mación médica personalizada y monitorizada se pro- gphin-rmispbk-eng.php duce en el entramado de una sociedad que recurre a su propia fuerza cognitiva y experimental para compartir- – Healthmap la en red. Al mismo tiempo, la sociedad busca y selec- http://www.healthmap.org ciona fuentes acreditadas y con reputación suficiente – Medisys para formarse una opinión sobre su estado o sobre su http://medusa.jrc.it problema de salud específico. Unido a este proceso, la percepción del propio estado de salud conduce a con- – Epispider feccionar entornos de comunicación interactivos cola- http://www.epispider.org borativos por tratarse de necesidades esenciales en la – Biocaster vida del individuo. Incide en todo ello el perfil del ciu- http://biocaster.nii.ac.jp dadano que pertenece a colectivos desfavorecidos, con dificultades para entrar en los servicios sanitarios y que – Wildlife disease information node obtiene en internet un medio para compensar, al menos http://wildlifedisease.nbii.gov/ parcialmente, el déficit de atención médica presencial – H5N1 Google Earth mashup y convencional. http://www.nature.com/avianflu/google-earth – Avian influenza daily digest and blog http://influenzadigest.net/news/ “Las redes de información médica pueden ser profesionales, institucionales, – Google Flu Trends comerciales o sociales” http://www.google.org/flutrends – Google insights for search http://www.google.com/insights/search 2. Modelos de red informativa – Distribute Podríamos hablar de cuatro grandes redes de infor- http://www.syndromic.org/projects/distribute.htm mación médica según su tipo de audiencia, velocidad – Geosentinel de implantación y naturaleza de los contenidos. Éstas http://www.istm.org/geosentinel/main.html serían la profesional, institucional, comercial y social. – Emerging infections network Profesional http://ein.idsociety.org Tiene sus canales constituidos y está en proceso de – Aarhus perfeccionamiento. Está vinculada a instituciones sa- http://biodefense.georgetown.edu nitarias, editoriales de prestigio, bases de datos y em- presas interesadas en el segmento de la audiencia cien- Institucional tífica y profesional. Algunos exponentes son Medline Estructurada directamente desde los entes guberna- en el terreno público y la editorial Elsevier. Si bien su mentales, está dirigida al público, pero con una clara potencial documental es enorme, por el momento no se intención de control y supervisión sobre la información encuentran directamente relacionadas con sistemas de personalizada. Su evolución se encuentra condicionada autogestión de la información médica personalizada. por la exigencia de cumplir con fines socio-sanitarios y http://www.ncbi.nlm.nih.gov/pubmed/ de alcanzar fronteras donde es preciso atender requeri- http://www.elsevier.com/wps/find/homepage.cws_home mientos sociales y profesionales sanitarios. El profesional de la información, v. 19, n. 3, mayo-junio 2010 261 Toni González-Pacanowski y Pablo Medina-Aguerrebere En el entorno español, encontramos algunos ejem- Así, destacan portales como New Hampsire citizens for plos como el Servicio Gallego de Salud (Sergas), en health freedom que cuestionan la medicina convencio- fase piloto el Servicio Catalán de Salud (SCS) y ex- nal, y otros como los foros de pacientes, los grupos de perimentalmente en varios países europeos. En el caso autoayuda e incluso los grupos de experiencias perso- del Servicio Gallego de Salud, el navegante accede a nales de gran valor moral. Una nota diferencial es que una oficina virtual para tramitar gestiones mediante estos colectivos han trasladado su estrategia de acción certificado digital. La interactividad consiste en que los social a la Red, constituyendo dispositivos de reivindi- usuarios pueden enviar sugerencias y reclamaciones. cación política, campus online y sistemas de documen- Igualmente, dispone de un servicio de canales RSS te- tación compartidos, entre otros servicios. máticos,
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