The Spanish Society of Health Directors (SEDISA) has launched the Working Group for the Integral Management of Rare/Minority/Infrequent Diseases, with the aim of advancing towards a specific reference framework for health directors in addressing these pathologies within the National Health System.
SEDISA recalls that, with more than 3 million people affected in Spain and 30 million in Europe, rare diseases constitute one of the "great challenges" organizational, clinical, and economic for public healthcare. In the Society's opinion, despite progress in public policies, research, and specialized clinical networks, the fit of managerial leadership in this complex environment "remains a pending issue."
"Ensuring that every patient with a rare disease receives the care they deserve, regardless of where they live or which hospital they go to, is an ethical imperative and a management challenge that we cannot postpone. SEDISA has the responsibility and the capacity to lead that change," stated the president of SEDISA, José Soto.
The new group, with an interdisciplinary focus and participation from different profiles, aims to study and propose measures that strengthen the role of health directors from strategic planning to the implementation of comprehensive and equitable care models. To this end, it will integrate aspects of governance, clinical management, efficiency, financing, equity, and socio-health coordination.
"Rare diseases are not a minor problem, they are the mirror of the great contradictions of the system. Either we learn to manage them in an integral, coordinated, and value-based way, or we will continue to fail the patients who need us most," pointed out the coordinator of the working group, José Manuel Martínez.
The coordinator also emphasizes that "the real challenge is not clinical, but organizational: to build management structures that allow innovation to reach all patients, regardless of the hospital in which they are treated or the autonomous community in which they live."
In the composition of the group are, among others, Félix Rubial, managing director of the Marqués de Valdecilla University Hospital (Santander); Carmen Rodríguez Pajares, manager of the Salamanca University Hospital; Almudena Santano, manager of the Infanta Cristina University Hospital (Badajoz); Alejandro Lendínez, manager of the Nuestra Señora de la Poveda Hospital (Madrid), and Ana Rosa Rubio, head of the Pharmacy Service of SESCAM (Castilla-La Mancha Health Service).
The work will be structured through regular plenary meetings, technical workshops by areas, and 'online' collaboration, with intermediate reviews to ensure the solidity of the conclusions. Among its tasks are the diagnosis of the current situation —gaps, inequities, and obstacles in management leadership in rare diseases—, the mapping of institutional structures, the study of European models adaptable to Spain, and the design of organizational and training proposals that promote the management role in this field.
Three key lines to transform management
The group will develop three major initiatives with the aim of direct impact on the healthcare system. The first is the "Roadmap for Quality and Efficient Management of Rare Diseases," a process of reflection and consensus that will bring together specialists to draft a document of proposals and recommendations aimed at improving coordination, efficiency, and innovation in the management of these diseases. The project will be deployed in four stages: identification of priority topics, a reflection day with experts, elaboration of the proposal report, and a final presentation and dissemination day.
The second proposal is the project "META-VALOR: Evaluation and improvement of care for metabolic rare diseases from Integral and Value-Based Healthcare Management," which will be carried out together with the Spanish Society for Healthcare Quality (SECA). This initiative includes a quantitative survey in hospitals across the country to ascertain the level of implementation of quality and efficiency criteria in the care of metabolic rare diseases. In addition, each participating center will receive an individualized diagnostic report with recommendations for improvement based on evidence and national and international benchmarking.
The third line of action will be the "SEDISA Webinar Cycle Keys in the Comprehensive Management of Rare Diseases: a look from Healthcare Management", formed by four 60-minute online sessions. In them, managers, clinical professionals and patient representatives will address the organizational challenges, success models, the role of patient associations and the effect of innovation and digitalization in the care of RDs.
Within this framework, the working group aims to develop a Strategic Framework for the Role and Competencies of Health Managers in RDs, accompanied by a roadmap for its deployment at the different levels of the system and a specific training proposal for SNS managers.
"This group is born with a vocation for permanence and real impact. We do not want to produce documents that remain in a drawer: we want the conclusions of this work to translate into concrete policies, tangible organizational changes and a better quality of life for the three million Spaniards who live every day with a rare disease", concluded the coordinator, José Manuel Martínez.