PRO94 EXPLORING POTENTIAL CLINICAL BENEFITS AND COST SAVINGS FROM IMPLEMENTING A STANDARDIZED DIGITAL REFERRAL PROCESS FOR DIAGNOSIS AND MANAGEMENT OF RARE DISEASES IN SPAIN: A CASE EXAMPLE FOR CHRONIC THROMBOEMBOLIC PULMONARY HYPERTENSION

Abstract

People affected by rare diseases often experience delays in diagnosis. In Spain, one patient out of four needs to be referred to a national expert center outside of his home region to obtain an accurate diagnosis. Physical displacement of patients can be time and cost consuming and impose an additional burden on the patient. Based on expert interviews the aim is to identify potential clinical and economic benefits that could result from the implementation of a standardized digital patient referral process between local hospitals and national expert referral centers for patients with suspected chronic thromboembolic pulmonary hypertension (CTEPH). Expert interviews were conducted to explore inefficiencies in the current patient referral process between local hospitals and national expert referral centers. The current patient pathway was compared to a potential alternative patient pathway based on a digital patient referral platform. Potential differences in clinical outcomes were described and theoretical cost savings were estimated from a payer perspective for different referral scenarios depending on distance traveled, transportation, hospitalization, diagnostic procedures realized, and subsidies paid corresponding to official tariffs in 2018. A digital patient referral platform could potentially improve the time to diagnosis and time to treatment decision for patients with CTEPH. Potential cost savings could derive from avoiding transportation, hospitalization, repetition of diagnostic procedures and subsidies paid for accommodation and diets for patients and their accompanying person. In a hypothetical low and high cost scenario, theoretical costs savings could range from 300€ to 4100€ per referral case avoided. The use of a digital patient referral platform could improve efficiency in the diagnosis and management process of rare diseases by potentially reducing time to diagnosis and treatment decision and could lead to overall cost savings for the national health system by avoiding physical patient displacements and replications of diagnostic tests.