The observatory is a consulting and support group in the field of planning to improve health care for people with them Rare diseasesAssociated with the Ministry of Health. Thus, its main goals will be its goals Collecting information, examining it and providing it for detailBy the Department of Management for Patient Care, from Planning to improve care and information for the patient with rare diseases And advice on planning, implementation and evaluation of improvement.
Observatory jobs
The observatory will be five functions. The first is an examination Rare diseases information system data in Madrid societyFrom newborn registration or another population base on rare diseases and formulation of conclusions from a Quantum and qualitative perspective This can be taken into consideration in the planning of the ministry to improve the care of affected patients and information systems.
secondly , Problem analysis and needs These diseases require, based on the knowledge and professional experience of the observatory members, in order to formulate the conclusions that may be taken into consideration in planning improvement or Recommendations on protocols or work lines.
Another of his duties is Analysis and monitoring planning tools It was prepared by the administrative bodies represented in the observatory in aspects related to these diseases, as well as to implement the proposal of coordinated procedures for the competent bodies according to this issue.
Finally, the last job is Spreading information on good projects, initiatives and practices Madrid community related to these diseases. For this procedure, among other aspects, its effect on improving clinical research and medicines and just access to clinical trials, clinical experiences, and Improving access to treatmentsEarly dialogue between the factors intertwined in orphan drugs, collecting effectiveness data, improvement in evaluation of innovation, clarity of less common diseases, simplifying internal or bureaucracy and cooperation with public or private entities Enhancing initiatives in the fields of education, patient support and awareness Social on these diseases.
Observatory composition
The observatory will be formed by the presidencyWhich is occupied by the head of the specialized management center in the care of the patients or the person who dedicates it; Deputy PresidencyAnd the head of the Administration Authority represents it with a general sub -direction scope with jobs in patient care; And 17 audio.
Among them, nine will match the members of the Ministry of Health and Madrid Service (Serma) with jobs related to rare diseases, Three audio representing patients The other five will comply with specialized health professionals, depending on their activity related to rare diseases in general centers, organizations or companies associated with Serma.
One of the new singers of the Ministry of Health and Sermas, who occupy it, must explicitly have jobs in health care matters, investigationSocial planning -health, Prevention, promotion and healthPublic health monitoring, provision of medicines and health products, hospital care, Initial care or Emergency Services Directorate-112.
The information published in the medical writing contains data, data and data from official institutions and health professionals. However, given any questions related to your health, consult the opposite health specialist.
