Linked Life Data

18976246

Source:http://linkedlifedata.com/resource/pubmed/id/18976246

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
1
pubmed:dateCreated
2009-1-19
pubmed:abstractText
The treatment of haemophilia in developed countries is based on home self-infusion of concentrates. Improving communication between haemophilia centres (HC) and patients is very important. The Hub Centre (Parma) designed a new outpatient clinical record, 'xl'Emofilia', as part of a project 'Web Connections of the Region's HC' funded by Emilia-Romagna Health Authority. It is a web-based application suited to the needs of HC, which shares the databases of the region's HC, integrated with regional and national registries that can be accessed from anywhere. Data are managed with the 'https' protocol. Significant innovations are 'pathways' that help with the entry of data and 'problem list', which is a summary (updated automatically) of the patient's clinically significant data that can be consulted at a glance. With a 'web identity' (a personal USB key for secure web access), patients can record bleeds and home infusions, consult their own data and allow access to their general practitioners or in emergency departments anywhere in the world (also in English language). In December 2006, the HC started to use 'xl'Emofilia' and 673 clinical records are now active. Since April 2007, 50 pilot patients have been trained and are successfully using the system. A questionnaire administered to these patients on their level of satisfaction with the system and its ease of use gave excellent results. Our web-based system facilitates communication between patients and HC, improves the quality of care and enables patients to use these information at any time and from anywhere in the world.
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Jan
pubmed:issn
1365-2516
pubmed:author
pubmed:issnType
Electronic
pubmed:volume
15
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
150-8
pubmed:dateRevised
2009-10-21
pubmed:meshHeading
pubmed:year
2009
pubmed:articleTitle
A web-based clinical record 'xl'Emofilia' for outpatients with haemophilia and allied disorders in the Region of Emilia-Romagna: features and pilot use.
pubmed:affiliation
Regional Reference Centre for Inherited Bleeding Disorders, University Hospital of Parma, Parma, Italy.
pubmed:publicationType
Journal Article, Research Support, Non-U.S. Gov't, Multicenter Study, Evaluation Studies