Isabel.org.uk    

What is it?

Funded the United Kingdom-based Isabel Medical Charity, Isabel.org.uk was designed in response to a misdiagnosis that almost killed a 3-year old named Isabel.  The girl’s parents, Jason and Charlotte Maude, created the site in 2000 to provide clinical decision support and information for pediatrics physicians in an effort to avert improper diagnoses and preventable illnesses.  With the expert guidance of Dr Joseph Britto, a specialist in intensive pediatric care, the Maudes hope that Isabel.org will be widely used by hospitals and medical professionals throughout the world within the next five years.  Access to the site is free to all registered members of the healthcare community, and although the system was initially targeted at United Kingdom-based health professionals, Isabel’s services are available to physicians the world over via the Internet.  Over the next year, the management team hopes to begin offering regionally customized online services. The site formally launched on 17 June 2002.     

Why was it created?

Isabel’s case demonstrated that a simple illness, chicken pox, can lead to tragic outcomes if not properly treated.  After multiple visits to the hospital to address a rising temperature and skin discoloration, Isabel was finally diagnosed with Toxic Shock Syndrome and Necrotising Fasciitis (a.k.a. flesh-eating bug), resulting in multiple organ failure and cardiac arrest.  After spending two months in the hospital, including four weeks in intensive care, Isabel was able to go home.  Although she has overcome the sickness that threatened her life, the experience Isabel endured left her with some ongoing health problems, mainly plastic surgery-related treatments that could last into her teen years.     

While the National Health Service’s (NHS) direct online and telephone advisory service helps advise patients on courses of action to address specific ailments, the NHS has not extensively used ICTs in its operations.  However, with donations from institutions and individuals, coupled with support from the medical community, Isabel has the potential to bridge the knowledge gap between physicians throughout the world, while serving as a catalyst for integrating new technologies in the NHS.  Isabel’s experience and the development of the Isabel.org website underscores the importance of providing professional and immediate support to physicians making critical decisions that affect future generations.   

How does it work?

While there are some common use segments of the site, the bulk of Isabel is dedicated to helping healthcare professionals formulate their diagnoses.  The Isabel differential diagnostic tool (IDDT), which runs on pattern matching software provided by Autonomy Corporation, is at the heart of the site.  By using IDDT physicians can input patients’ symptoms to retrieve a range of 15 diagnoses from Isabel’s extensive library containing over 3,500 possibilities.  Given that junior-level doctors and non-specialists are generally the initial contact that a child has with the medical community, IDDT provides instant access to a wide range of symptom and treatment guidelines created by medical experts.  Another crucial component of the site is the annotated image library, which affords physicians the opportunity to compare x-rays and clinical pictures that have been donated from a variety of medical fields.  The site also facilitates an ongoing discussion forum that allows physicians to share ideas and experiences.   

What is the future of Isabel.org?

Given the ever-growing demands for service and increased regulations on physicians (e.g. Work Time Directive, alternative and supplementary medical resources, such as Isabel.org, will play an increasingly important role in the future of healthcare.  As a testament to the success of Isabel, before it launched publicly the site had over 3,000 users and the backing of some of the most talented pediatric specialists in the United Kingdom The management team hopes to have the pediatric version of Isabel fully completed in 2004.  The estimated cost of the first phase of the site is £517,000.  Thus far, the Charity has raised approximately £400,000, but needs to double that amount to complete the system for both children and adults.  Depending on funding, the management team hopes to begin providing medical reference services for adults sometime in 2004.  In a recent online United Kingdom Telegraph article, Dr Britto indicated that the “online second opinion” source could potentially reduce medical errors in the National Health Service. 

The Isabel site, although spawned from an unfortunate incident, demonstrates the effectiveness of a grassroots approach to building a world-class digital system designed to save lives.  With a sound growth model and a highly committed staff, Isabel promises to become a model for information age healthcare-related initiatives.     

Information for this case study was compiled from the following resources:   

• Isabel Medical Charity

• Autonomy Systems

• Telegraph Group Limited

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