OrPhar-SEFH 2024-2027 Strategic Plan

Abstract

To promote the transformation of hospital pharmacy in the field of rare diseases, the OrPhar-SEFH Strategic Plan 2024-2027 was developed. Twelve hospital pharmacists from the OrPhar-SEFH group participated in the project which was developed in 3 phases: Situation analysis, trends, and current challenges in rare diseases and their impact on the role of hospital pharmacist through literature review, interviews with hospital pharmacists and patients (FundAME and Fedhemo), and SWOT analysis; Definition of lines of action grouped into five strategic axes AEIOU (Alliances, Evidence, Research/Innovation, Optimization, and Union); and Prioritization of lines of action based on impact and feasibility. In order to achieve this, the existing trends and barriers in the field of rare diseases and hospital pharmacy were identified and classified around 4 levers for change: transformation of the care process, patient experience, evaluation and access to orphan drugs, and real-world evidence. The SWOT analysis identified key success factors, and interviews with patients identified their needs in four pillars: role of the hospital pharmacist, patient experience, patient education, and access to treatment. A total of 23 lines of action were agreed upon: Alliances (6), Evidence (3), Research/Innovation (4), Optimization (7), and Union (3). Based on their impact and feasibility, the following were prioritized: promoting hospital pharmacist collaboration in decision-making structures regarding the evaluation and positioning of orphan drugs, enhancing the role of hospital pharmacist in the critical analysis of scientific evidence in rare diseases and its translation to interdisciplinary clinical teams, encouraging the use of Multi-Criteria Decision Analysis methodology in orphan drugs, promoting the integration of hospital pharmacist into interdisciplinary teams managing patients with rare diseases, and creating a network of specialized hospital pharmacist services in rare diseases. Ultimately, the OrPhar-SEFH Strategic Plan 2024-2027 defines the roadmap to enhance the role of hospital pharmacist in addressing rare diseases, improving access and evaluation of orphan drugs, and optimizing the care process to improve health outcomes, quality of life, and patient experience.

Keywords: Análisis de decisión multicriterio; Enfermedades raras; Equipos interdisciplinares; Interdisciplinary teams; Medicamentos huérfanos; Multi-criteria decision analysis; Orphan drugs; Plan estratégico; Rare diseases; Strategic plan.