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18 February, 2022Professionals and users debate together how to improve assistance in a total of 10 days
The Miguel Servet University Hospital of Zaragoza and the Aragón Health Research Institute held this Thursday, February 17 (12.30:14.30-XNUMX:XNUMX p.m.) a conference on rare diseases with clinical experts and patient associations. This session opens the “Patient Experience” cycle, a program whose main objective is the real participation of the population in the planning and management of the Sector to try to satisfy the needs of patients with very diverse pathologies.
The sessions are not open to the public, since they are working groups formed between professionals and those responsible for patient associations.
The first session will be held this Thursday, February 17, with a day on rare diseases, pathologies with very low prevalence, which means that there is little experience in this regard, that the diagnosis is complex and difficult and that the patient is sometimes very alone in the face of the adversity of his process. According to the World Health Organization (WHO), there are nearly 7.000 rare diseases that affect 7% of the world's population. In total, it is estimated that in Spain there are more than 3 million people with rare diseases.
The “Patient Experience” program addresses a disease or area of diseases each month in a space for dialogue in which all related groups participate: more than 30 patient associations, health professionals and entities such as La Caixa Foundation, Mémora Foundation or Medtronic . From these sessions, specific proposals are subsequently extracted for subsequent implementation and monitoring.
In total, 10 days make up this program in which an improvement in the patient experience will be addressed. In January the annual Project was presented internally, February begins the sessions with the participation of associations in the field of Rare Diseases; The March table addresses the field of Hematology and Oncology; The April session focuses on Humanization in Assistance; May analyzes the processes of care for stroke patients and June's table focuses on cardiac and respiratory conditions. Skin diseases, gynecological and breast oncology, Mental Health and the chronic patient are addressed in the following months. December closes the year with a closing session and project evaluation.