▶ Introduction. The interest on the debate of the involvement of consumer and patients' associations is increasing. Between the various interested fields, the clinical research is opening on the citizens' participation in the definition of its agenda and its priorities. ▶ Aims. This article describe a survey carried out in the framework of the activities of PartecipaSalute, a research project launched in Italy to foster a strategic alliance between lay people, represented by consumers' and patients' associations, and scientific community toward better health and shared decision-making. ▶ Methods. A postal questionnaire has been distributed to the consumers' and patients' associations included in the database of PartecipaSalute and to the representatives of associations participating to a training course. ▶ Results. 147 associations have been contacted, 58 associations have answered. Data collected showed that associations responding are not really satisfied by results obtained by clinical research in their field: in the last five years the clinical research has not answered to relevant questions for patients (44%), neither has measured important outcomes (44%) for the patient. According to 59% of the answering associations, several areas are in need for clinical studies and research. All the associations are willing to collaborate closely with the doctor-scientific world. ▶ Discussion. Consumers' and patients' associations emphasize the necessity of research projects on psychosocial aspects, epidemiology and risk factors, care and therapy. Results obtained demonstrate that the common idea that patients and their associations demand new therapies above all, in particular drugs, and in general terms «technology», is not correct. In Italy at the moment for most of the pathologies the research priorities are not discussed with consumers' and patients' associations; although the involvement of the patients and citizens is still at the beginnings, some international studies show the possibility and the opportunity to define priority of research shared between doctors and representatives of patients.
|Translated title of the contribution||Does clinical research respond to patients' needs? The results of a survey by PartecipaSalute|
|Number of pages||12|
|Journal||Ricerca e Pratica|
|Publication status||Published - Sep 2007|
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