The impact of information technology on haemophilia care

Abstract

The past decade has seen an explosion in the use of computers, data programs, hand-held electronic devices and the Internet. How these advances impact on haemophilia management both now and in the future are discussed from the perspective of haemophilia registries, Internet-based electronic haemophilia treatment records, and the potential for haemophilia telehealth.

Improving the management of chronic diseases using web-based technologies: an application in hemophilia care

“…Particularly in hemophilia, Baker et al [5] and Walker et al [7] show the relevance of web-based ICTs, stressing that one of the most relevant applications of electronic recording is the identification of early episodes of bleeding in the home setting, which otherwise would not have become apparent until the patient's next clinic visit. ICTs are, also, helpful in identifying inappropriate use of CFC during home-therapy.…”

“…Since hemophilia care is very expensive, cost-effective use of resources is extremely important. Ensuring the best data quality requires a continuous improvement process that includes the adoption of new ICTs, timely data entry, rigorous audit and definition of data fields [5]. Consequently, improving communication between patients and hemophilia care staff and the quality and timeliness of data collection and manipulation gives the best opportunity to improve long-term clinical outcomes in cost-effective way [13].…”

“…Thus, there is an urgent need for the collection of meaningful outcome data for chronic diseases (like hemophilia), in order to support clinical decisions [5], and consequently to support eventual research in this domain. In this context, ICTs have an important role, providing an effective communication between patients and HCPs to enhance care, and at same time to improve the quality of data needed for managing chronic diseases.…”

“…Literature reports the importance of adopting Information and Communication Technologies (ICTs) to improve the communication between healthcare professionals (HCPs) and patients, as well as the quality of services and patient care [5], [6], [7]. Notably, web-based ICTs have the potential to support the ongoing care needs of patients with chronic diseases and the collaborative management that this kind of disease requires.…”

Web‐enabled registry of inherited bleeding disorders in Portugal: conditions and perception of the patients

“…Beyond the data management of the disease, this type of applications, when based on Web, also have an important role in data exchanges and communication between strategically located HTCs and geographically dispersed patients [5,14,15]. As a result of haemophilia being a rare disease, HTCs are usually located in the major cities, while patients are scattered throughout the country.…”