The impact of information technology on haemophilia care

Summary.  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.

[1]  Frederick B Rogers,et al.  Telemedicine reduces discrepancies in rural trauma care. , 2003, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[2]  Robert L. Glueckauf,et al.  Research on telehealth and chronic medical conditions: Critical review, key issues, and future directions. , 2002 .

[3]  J. Kumekawa,et al.  Health information privacy protection: crisis or common sense? , 2001, Online journal of issues in nursing.

[4]  I. Kohane,et al.  Public standards and patients' control: how to keep electronic medical records accessible but private. , 2001, BMJ : British Medical Journal.

[5]  Jack V Tu,et al.  Impracticability of informed consent in the Registry of the Canadian Stroke Network. , 2004, The New England journal of medicine.

[6]  Angus Nicoll,et al.  Consent, confidentiality, and the threat to public health surveillance. , 2002, BMJ : British Medical Journal.

[7]  S. Solovieva.  Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disorders. , 2001 .

[8]  C Warlow,et al.  Using patient-identifiable data for observational research and audit , 2000, BMJ : British Medical Journal.

[9]  C. Verity,et al.  Education and debate: Consent, confidentiality, and the threat to public health surveillance * Commentary: Don't waive consent lightly---involve the public , 2002 .

[10]  Penny A. Jennett,et al.  Telehealth: 'real life' implementation issues , 2001, Comput. Methods Programs Biomed..

[11]  S. Solovieva.  Clinical severity of disease, functional disability and health‐related quality of life. Three‐year follow‐up study of 150 Finnish patients with coagulation disorders , 2001, Haemophilia : the official journal of the World Federation of Hemophilia.

[12]  Nicolette de Keizer,et al.  Model Formulation: Defining and Improving Data Quality in Medical Registries: A Literature Review, Case Study, and Generic Framework , 2002, J. Am. Medical Informatics Assoc..

[13]  C. Urquhart,et al.  Telemedicine versus face to face patient care: effects on professional practice and health care outcomes. , 2000, Nursing times.

[14]  Sultan,et al.  Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in France , 2000, Haemophilia : the official journal of the World Federation of Hemophilia.