title: [Personalized medicine from the viewpoint of patients and their relatives].
abstract: Our goal was to overview the situation of personalized medicine, especially to characterize the role of patient organizations. We embedded this process into the on-going procedures of the transformation of health care system, outlining the Hungarian and international tendencies. We introduce the exceptional role of rare diseases, among others the rare cancers, thanks to their special status. Some results of the recent Hungarian and international surveys are also demonstrated. The presented global tendencies give the frame for the necessary alteration of the Hungarian health care system. Beside the solution of the country-specific problems of our health care system, the main principles of the new paradigm of 21st century medicine are also influencing: personalized, participatory, preventive, predictive and proactive. The new medicine is continuously associated with the patients, instead of separated interventions. The changing of attitude is necessary for spreading these principles and also gives the basis of future medical service of society. The role of patient organizations is vital during this progress. The development is possible to the direction of patient-centred health care model by changing the structure of residential expenditure, even during the time of global financial crisis. However, a stronger community involvement is required. Good examples of this patient organization involvement are presented in the case of rare diseases, which can be, together with orphan drugs, the precursors to personalized medicine, paving the path to this direction. A closer participation of patients and their organizations is essential to transform the present health care system to the route of personalized medicine and to alter the public outlook.
authors.affiliation: Ritka és Veleszületett Rendellenességgel Élők Országos Szövetsége, Budapest, Hungary. pogany@rirosz.hu
authors.forename: Gábor
authors.initials: G
authors.lastname: Pogány
mesh_terms: D002986:Clinical Trials as Topic / Q000379:methods / Q000592:standards / Q000639:trends; D057210:Delayed Diagnosis; D003695:Delivery of Health Care / Q000379:methods / Q000458:organization & administration / Q000592:standards / Q000639:trends; D042241:Early Diagnosis; D005062:European Union; D006801:Humans; D006814:Hungary; D058990:Molecular Targeted Therapy; D009965:Orphan Drug Production; D010358:Patient Participation; D028701:Patient Rights; D018802:Patient-Centered Care; D010817:Physician-Patient Relations; D057285:Precision Medicine / Q000379:methods / Q000639:trends; D035583:Rare Diseases / Q000175:diagnosis / Q000188:drug therapy; D012042:Registries; D012107:Research Design; D012945:Social Values